my trip to the hospital

My last Facebook post featured light-heartedly a photo of Poison Ivy played by Uma Thurman in the 1997 movie, Batman and Robin, as I shared that not only did I have what I thought was poison ivy that started as a patch on my leg, but it had taken on a life of its own transforming into a painful, itchy rash all over my body. And though I received many helpful responses from caring people who have used a variety of products that have worked to reduce the itching and swelling for them, I should have been more forthcoming in my request for prayers, as my condition had already moved beyond the point in which any of the help offered would truly do much good. I had no idea how my adventure was going to unfold or that I would find myself falling into the rabbit hole of medical intervention. This is my story of how I came back out.

Mia Wasikowska in Tim Burton’s 2008 rendition of Alice in Wonderland

NOTE: Before I go into more details about this experience than perhaps you would like to know, (feel free to skip over the parts that do not interest you) I offer this statement: This is not a review of local hospitals or even a general statement about the quality of medical care I received. As in all walks of life, some are better at their jobs than others. What I experienced was a wide range of care and I am truly grateful for all everyone did to get me back into the comfort of my home with my husband and my dog. I hope you will read this in that light and not spend time trying to figure out where exactly I was or where you should go if you have need of medical assistance if you live where I do. I am only one person with one opinion. This is my story.

Saturday, August 29, 2020, I got up after another sleepless night of itching a rash that was getting considerably worse and decided I needed to return to the urgent care center near my house since their parting words to me when I was there two days earlier was if it did not get better with the prescribed prednisone, to please come back for reevaluation.

My apologies but this photo is so much better than what the rash turned into so let’s all be happy for that.

As I unwrapped the gauze-covered wounds that continued to seep all over everywhere, refusing to respond to the current treatment, the doctor did not conceal that look. You know the one that I’m talking about. The look that says all is not well regardless of how good your imagination is. She had someone check into the waiting time at local emergency rooms and said if I went immediately, I could be seen relatively soon. Hesitating briefly, I thought about returning home first. I had only had one cup of coffee and no breakfast. Pushing those needs aside, I kept driving.

I was surprised to see an almost empty ER. Quite a different scenario than the one embedded in my memory from years ago in which I held my crying son as his almost amputated toe hung by its skin and everyone involved in the accident was showing a lot of emotion. Except for me. I was in full-out mama-mode and may have even been humming to my boy. I most likely was in shock but no one had seemed to notice in a crowded room filled to the brim with needs.

But Saturday was different. I was by myself, in line behind a woman with a bloody bandage who was explaining how she became wounded when the chainsaw guard did not guard her hand from being gouged. She had not lost any fingers, she said, but there was quite a bit of blood. She seemed quite coherent and I was proud of her for having the nerve to learn how to use the chainsaw to begin with, even though it unfortunately did not work the way intended.

After being walked back to a room, I was asked to put on a hospital gown and lie down on a bed. The rash continued to spread unabated. It would not be threatened by those eager to assist in my recovery. A nurse with compassionate eyes and a great sense of humor took over. She said she would tell me the truth no matter what and I immediately developed an affinity for her. When I asked if I could have my thyroid medication she said she understood how easy I thought that was going to be. I think someone examined my pill box and identified the pill before allowing me to swallow it. I am so programmed to do my daily regimen that even in the midst of this out-of-control rash, I knew that I needed to maintain myself as best as I could.

I am unclear about how many medical personnel were in and out of that room. I remember being asked over and over if I had recently taken any new medications, eaten something different, gone somewhere new or in any way changed my daily routine in which I had come into contact with this thing that had become a rash, now ravaging my body. Was it in my mouth? In my eyes? Affecting my breathing? How far was it going to go? How much danger was I going to be in?

All I could come up with was that one day, I think it was the Monday before, I had come home from work to hear my husband say that the dog had decided to take himself for a walk. What that means is that he got away from my husband and ran into the woods behind our house. My husband used to be able to walk back there, on the path beside the creek, and I figured I would do the same. I didn’t realize until I got there that the path is now overgrown. There really isn’t a path anymore. So I walked through knee-high overgrowth calling for our naughty old pup. The dog probably would have made his way home eventually but now that he is 13, somewhat deaf and blind, I didn’t want to take the chance. Before long he came running out. Lost dog: found.

The next day I noticed red bumps on my left leg and figured they were mosquito bites, possibly a spider bite, or most likely some poison ivy I must have brushed up against. By Wednesday I happened to look down to see yellow sacks of unpleasantness forming before draining uncontrollably into my Birkenstock. Since I was at the school where I work, I sent a photo to the school nurse who seemed to think I was experiencing an allergic reaction to poison ivy, reminding me that she was not a doctor and did not have the ability to give me a diagnosis. I asked one of the security officers at the front desk of the school to find some bandages so I could cover over this multitude of whatever it was running down my leg to divert the attention of the 3 and 4-year-old children under my care.

By Thursday morning it was apparent to me that I should not go into work. I would have to face the fact: I needed medical attention. I had never taken a sick day while at this job but I had no other recourse. The clinic near my house was the obvious choice since getting an appointment anywhere else would have most likely put me on a long list and I did not have the luxury of time. I could not imagine going directly to the hospital since that sort of behavior is what people without insurance are forced to do, ending up with breath-taking medical bills afterward. I did not want to put myself into that category since I did not have to.

But here I was in the ER, trying to figure out, along with all of the medical personnel, what was happening to my skin!

After about seven hours I overheard a conversation about the possibility of admitting me to the hospital. I was concerned that this was a bigger problem than I had imagined. I then heard talk of sending me to a burn unit since a burned person is precisely what I was beginning to look like. Dermatology was another word that kept coming into the conversation. And just as I thought they would be taking me upstairs to a room, I was told that the team was on their way to transport me to another local hospital about 30 minutes away. By ambulance. While an IV containing pain medication was trying to give me some comfort.

I would not find out until much later that apparently I don’t respond to most pain medications. Or more correctly, I respond, but not in the intended way. Benadryl either has no effect or makes me hyper instead of relaxed. The Percocet given made no difference. By the time I was being placed into the ambulance I was being given Fentanyl and asked if my pain level which I said was at least an 8 out of 10 had subsided. It had not. So they gave me more and asked again. I wanted to say it had helped. They were such nice men. I asked if I could give it a 7 and a half. No. Nothing was touching the pain.

By the time I was wheeled into a hospital room, the urgency of the ER had transitioned into a slower pace of setting me up in my new temporary home where I needed to order dinner and familiarize myself with the nurse call button and how to position my bed. I was suddenly “on vacation,” the kind I would never have chosen.

I’m not sure exactly when it happened, since the drugs in my system were having some sort of effect even if it was not in reducing the painful itching, but a doctor came into my room to ask me what are referred to as the advance directive questions. He asked if I were in need of life-saving measures in order to restart my heart or be put on a ventilator in order to keep me alive–would I be interested?

My response: “I’m reading Being Mortal.”

He looked at me in a way that acknowledged that he, too, is familiar with a book written by Dr. Atul Gawande with a subtitle: Medicine and What Matters in the End. I don’t think I said out loud that I was reading this book in reference to my husband’s end of life considerations due to his ALS diagnosis, and that this has nothing to do with me. I’m not the one dying. Right? I think I mumbled something to the effect of: “Sure, save me.” It would not even occur to me until much later that my life could have ended, my husband would have had to write an obituary he said I would never be completely satisfied with, and he would have to put the house on the market and find assisted living to go on for as many days as he may have left.

According to hospital policy, one admitted to the hospital must surrender all prescription medications in one’s possession. This is what I imagine it must be like for someone being arrested. I volunteered that I had a small pill box in my purse that contains my thyroid medication. How I regretted being so upfront about it as I am fairly certain no one would have done a search. I would be told that their pharmacy has Synthroid and that I would be given the amount per my prescription.

Ok, if you have known me for very long, or if we have ever had the “thyroid medication” conversation, you know that hearing I would be given Synthroid in no way put my mind at ease since Synthroid was the first thyroid drug I would be introduced to in my nearly 17-year hypothyroidism journey, and though it was given to me in varying strengths, would never prove to be effective for my condition in any possible way. (As an aside, by the time I was tested for hypothyroidism, a genetic gift from my parents, my thyroid stimulating hormone or TSH was at an 11. It is supposed to be at a 1 for optimal health. What I would discover on my journey is that there is discrepancy in what is considered optimal and what is considered “good enough.”)

I told the nurse that I took a natural hormone for my thyroid condition. She said Armour was available. Not to be a difficult patient, I told her I have not been able to take Armour ever since it was taken off the market and reformulated with a filler I am allergic to and causes me to become ill. She said if someone could come to the hospital with my actual prescription bottle, I could be given my own prescription. I told her that was not an easy request. She must have noticed my wedding ring as she said the way a frustrated mother would scold a young child, “Why can’t your husband just bring it?”

I responded, “Because my husband cannot drive all the way over here. He has ALS.”

“Well what about his caregiver? Maybe that person can bring it,” she said as her tone became more of a teacher about to send some wayward kid to the principal’s office.

“I am his caregiver.”

Perhaps this nurse was overworked and underpaid. She could have been at the brink of exhaustion. Or maybe she had spent time working with juvenile delinquents or even hardened criminals. Maybe she missed her calling altogether. Maybe she lost sight of the patient before her: the barely 59-year-old woman with her skin falling off who was having a difficult time managing the pain and was telling her the truth. Instead she scoffed at me and I wondered out of all of the lies I could have ever told, why I would ever make up the fact that my husband has a progressively debilitating disease that may end his life sooner rather than later and he could not possibly just drive on over with my prescription medications. This was not a “the-dog-ate-my-homework” type of excuse. This is the life I am living.

The other obvious part to the Armour conversation is that in the midst of being asked by the multitude of those helping me what I could possibly be allergic to, I was without a doubt offering up something that actually makes me ill. And yet, that was the medicine doled out to me the next morning. I took it thinking that having the thyroid hormone would outweigh the stomach ache I would have all day. I was wrong. The worst part was that it was by this point Sunday and there was no way my doctor could be contacted, or the pharmacy where I get my prescription, or anyone else.

Except for my husband and my friends who could drive him and who decided to make a mission of mercy and come to the hospital with my prescriptions.

I was not even aware that my husband would be allowed into the hospital during this time of pandemic, but they not only allowed him in but my friend insisted that he needed her help as he now is a fall risk and makes his way slowly by use of a rollator walker, so she was able to accompany him and come in briefly as well. Maybe they thought he was a patient. Maybe God was intervening. For whatever reason, the small plastic bag my husband was carrying was never inspected and the presumed contraband was not confiscated. He brought my thyroid medication and another medication I take at night to my room where I hid it in the bag that contained my clothes in the small closet.

I am a law-abiding citizen and truly respectful of rules, for the most part. But I also knew if I wanted to have a regular constitutional in the morning so that the nurse could check that off her list and not have a stomach ache to add to the pain I was in, I would have to take matters into my own hands. I safely tucked a few thyroid pills into a pocket of my purse. I knew my honesty would prevail and I would eventually give up my prescription bottles. I also hoped that I would be allowed to have my prescriptions as my doctor intends. When I was told that my afternoon dosage was not on my prescription (see the part in which it says Take 1 tablet by mouth TWICE daily) it was promised that I could have it at 9 p.m. I was happy to be able to regulate my metabolism at the appropriate time of day with my secret stash, and not be given something that would also keep me awake at night.

I would be given Benadryl IVs along with some other pain medication that gave a certain amount of relief and allowed me to sleep until the friendly certified nursing assistants would come to take my vital signs and someone else would come about an hour later to try to find a vein that had some potential of rendering another blood sample. At least in my bed I was no longer wearing a face mask like I had in the ER. I had endured a COVID test that had come out negative and for that decided that I was ok as long as I stayed in my bed. Except for the bathroom, I had nowhere to go.

A doctor from the dermatology team came to do a biopsy and talk to me about a possible diagnosis of my condition. There exists a very rare, chronic autoimmune disease that usually affects someone at the age of 60. I don’t know if he said this because I am closing in on that age or if this was a reasonable guess, but as he carved a circle on one arm and punched a small hole that he would stitch up on the other arm, I wondered if I was ever going to recover or if this would become a life sentence. I already have one chronic disease which requires me to take medication every day of my life (twice a day!) and I really did not feel that I needed another.

The biopsy would be analyzed some time on Monday or maybe not until Tuesday. I don’t know what he said after that. I had left home Saturday morning. All I wanted to do was to go back.

Sunday night I slept for the first time in awhile.

Monday I spent watching movies while I ate the food delivered to my room. I was finally given one of my thyroid pills, along with one of my other pills that I don’t take until the evening. I pointed out that I was supposed to have three of those pills, (Take three capsules by mouth at night) but even though it is clear on the prescription bottle, there was nothing clear about what was happening.

The pharmacy department called to consult with me and get a full list of all the substances I take on a daily basis, or at least those I was willing to admit to. This is a problematic question given that within the norms of traditional medicine it does not entirely make sense. Let’s face it, I am a woman of a certain age who wants to make the most of her energy level, have a healthy weight (even though I am always about ten pounds more than my goal at any given time), and avoid hot flashes at all costs. I take a variety of herbal concoctions including pregnenolone, DHEA, a probiotic, something called estrogen control and one of my favorites: ashwagandha.

Ashwa–what? I know. There is always a pause while the person evaluates my status. Is she crazy or just an aging hippie? Whatever, man.

That is my morning regimen in addition to NP Thyroid, a natural hormone for hypothyroidism, a disease that happens when the thyroid gland which regulates metabolism stops functioning. Mine gave up the ghost almost two decades ago.

At night it is magnesium, a couple of multivitamins, vitamin D, progesterone, and melatonin. I know this is more information than you need to know. I only reiterate it here because after a couple of days of being without these live-giving properties that I rely on to be the civilized person I hope to be, I was becoming less able to deal with anything. Forget about the lack of chilled Pinot Grigio, various flavors of White Claw, possibly a craft beer or Guinness, and whatever else I may deem necessary to fully embrace this world in which we live.

A group of dermatologists would consult with me, reversing the prior pre-diagnosis of the dermatologist who had taken the biopsy. It was the happiest moment I had experienced in awhile. Happy, yet confusing. I did not have the autoimmune disease which was amazingly wonderful news. The biopsy supported a diagnosis of an external source creating the allergic reaction. But what was it? No one knows! Poison ivy is a good guess, but not the definitive conclusion. Something happened. I reacted. End of story. Is the moral of the story that I should never walk into the dark scary woods again? Given the information at hand, whatever happened, happened.

As an aside, I do know that I am allergic to MSG, the filler in Armour thyroid, and have the exact opposite reaction to Valium thanks to an unfortunate dental sedation procedure. I know I am somewhat lactose intolerant and that there is an additive in most ice cream that makes me feel pretty sick. I have broken out in a rash from laundry detergents and soaps. I have to use products for sensitive skin, and generally need to have everything unscented and with as few chemicals as possible. I can get sunburned within minutes. I seem to have every recessive trait known to mankind. This is not me trying to be a weirdo. This is just who I am.

By Monday night I could no longer sleep. At all. At midnight I turned on another movie. By 3:30 a.m. I drifted off until maybe 4:30. And that was it. I asked for medication. It had no effect. I waited a couple of hours and asked for more. Still nothing. A nice older woman desperately seeking a vein that had not been blown out said I could ask for more of something. I asked if I could have the prednisone. Nope. That was not scheduled until 9 a.m. I would only have to endure unbearable itching a few more hours.

I was greeted at 6 a.m. by the nurse with my thyroid medication. I didn’t want to take it because it truly serves as my wake-up call and I wasn’t prepared to face the day. It was then that I realized I would not have the opportunity for sleep because another doctor would need to consult with me and decisions would have to be made. I was in no shape to make them, but it didn’t matter. I tried to summon some sort of polite behavior but heard myself speaking in a tone that would be categorized as irritable. I told the doctor that I was getting better and that I needed to leave. Now! By the grace of God alone, she agreed.

Another doctor consulted with me. I told her I had been unable to sleep. All night. She went over to the computer and said it was no surprise. The first medication given was in such a small dosage, there was no hope of it giving me any relief. The second medication was in an equally small, ineffective dose. She pointed out that I was strung out because that is what steroids do to one. They also will make me gain weight. This is not what I needed to hear! But she was kind and had an unpronounceable Indian name and spoke in a British accent, I think, calling me “darling.” I needed to hear someone calling me darling and telling me the truth. I just for the life of me could not understand why there was not a better system for communication between the doctors, the nurses, and the pharmacy. I have thought about writing a letter since that is what I do when I am wondering about something and want to share those curious thoughts with someone in a position to possibly effect change. I don’t know, though, because I have been kind of in and out and not always on my best behavior. It is hard to fully understand and document something when one is unsure of what day it is.

I was told that I could be discharged by noon. It was Tuesday, September 1, 2020.

By one o’clock I was wheeled down unfamiliar corridors. Everything looks different when one only has a view of the ceiling from the stretcher. My husband greeted me outside with the friends who had come to my aid. They were now happily driving me back to my life. Still itchy and somewhat out of it I struggled to sense what was going on. All I cared about was going back to some sort of normalcy.

But though I was managing the itching during the day, it came back full-force once I turned in for bedtime and I could not sleep. And there was no button to push for help. I put whatever I could on the rash to no effect and made my way through another miserable night.

By Wednesday afternoon my prescriptions were ready at Costco and though I had barely seen the light of day for awhile, got myself into my vehicle while wearing a long-sleeved Madras shirt that I used to wear as a bathing suit cover-up and the long gray skirt appropriate for the Muslim part of the African country for which I purchased it a couple of years ago. Driving down the highway I put in Carole King’s Tapestry, my favorite album of all time, and sang along since I know the words to all of the songs that I have been listening to since I was in 7th grade. I was going to be ok. More than that. I am grateful that I was able to get the medical help I needed in a timely fashion, which is more than many can ever hope for.

I stayed up until midnight just so I could take another medication that would help with the itching. It was better but not enough to give me relief. I got more sleep than I had in awhile and though the rash is still very pronounced, the constant tingling is beginning to recede to a bearable level. The large patches of angry, red seeping mess are drying out, flattening, and healing. Soon my pale, freckled skin will be restored and this whole thing will be nothing more than a really bad week.

If I am honest, I have to admit that it is hard for me to draw attention to myself and my needs, especially in light of the very public deterioration of my husband’s health. He posts how many laps he swims at the public swimming pool and is cheered on as a beautiful way of support. We are sent lovely cards and messages to encourage him. Most recently we were sent an article that addresses the latest drug trial in ALS research in hope that something can be done to extend his life. Anything.

So in the midst of all of that, I had need of prayers, too. But I felt more comfortable in my all-too-familiar-wallflower way of not asking for help.

Sometimes a caregiver needs care.

A lot of the time, truthfully.

Thank you for reading and sending me your love.

before the world changed . . .

Before my youngest son’s spring break was extended a second week, his university classes moved online soon thereafter and he moved back into his bedroom, changing our status from empty-nesters to, well . . . not,

Before schools closed their doors, cancelling all of the extracurricular activities that make school worth living and teachers immediately given training to conduct online education giving “coming to class” an entirely different meaning,

Before we had ever heard of Zoom and previously only associated it with toddlers playing with cars, trucks and tiny airplanes,

Before live streaming a Sunday service became the new way to worship God from the comfort of a living room chair with a cup of coffee, including do-it-yourself communion, remotely encouraging the gathering of all to love and good works,

Before I suddenly found myself with the first real time off in about four years and was extremely pleased to actively engage in a whole lot of nothing for as long as I could get away with it,

Before I wondered if I would get paid and then never felt so grateful to work as a preschool teacher for a small, private school even though I’m also a writer and an artist, and am currently not getting paid for either one of these other endeavors,

Before toilet paper, hand sanitizer, Clorox wipes, paper towels, and tissues would disappear from the shelves, along with large bags of rice, chicken, and sometimes even bread, and we would all wonder why,

Before a stay-at-home order was put into place and we were all encouraged to make the best of it in our homes, though we knew being outside was better for our health so we walked around the block and saw neighbors we hadn’t seen since I was a soccer mom,

Before I started sleeping in, having a leisurely cup of coffee, walking my dog daily three miles, doing yoga for thirty minutes, drinking more coffee, watching movies, reading, sewing, and having dinner made before happy hour begins,

Before COVID-19 became a disease everyone knew about–everyone in the world,

Before my doctor who treats my thyroid disease with natural hormones not prescribed by doctors practicing traditional medicine (even though it has restored my health) sent me the link he recommended of a couple of doctors in Bakersfield, California,

Before YouTube censored the video because it was deemed dangerous for society even though these men went to medical school like the rest of the doctors and may even know something about disease and medicine, and other doctor-related stuff,

Before it became impossible to know which media source to believe and it didn’t really matter because it was too traumatic to watch any news but even if one did subject oneself to the news, the constantly changing nature of it makes one feel kind of crazy,

Before our street was lined with cars one afternoon as teachers and friends of a high school graduate performed a socially distanced graduation ceremony across the street for the benefit of his mother who would die the next week of cancer,

Before wearing a face mask demonstrated how one may align politically,

Before wearing a face mask became mandatory in many public places except Walmart where all bets are off about pretty much everything,

Before no one wanted to hear how a face mask really can fog up one’s glasses, cause shortness of breath and sweating to occur the entire time,

Before questioning the effectiveness of a face mask was no longer tolerated,

Before the hope of a vaccine allowed for a pause in the global conversation,

Before it was pointed out that it may take years, if ever, to produce a vaccine,

Before realizing that some of the postponed events may not ever be a part of our future, like attending the performance of Beethoven’s Ninth Symphony at the new performing arts center as my husband’s ALS continues to progressively take his life away,

Before Zoom fatigue became a thing, experienced by introverts and extroverts alike,

Before one was voted off the island–the tribe has spoken–or unfriended by those who have decided only certain opinions are the correct ones, but we are not sure which ones those are,

Before I became aware that some posting on Facebook have been accused of “bearing false witness” while others are not and wondering if it is possible to know the difference,

Before I wondered if those who did not stand up for me when others bore false witness against me will now choose to stand up for those who also deserve justice because it is the right thing to do at work, in church, and everywhere we live and breathe,

Before I was asked by a friend why I had not written anything in awhile–Didn’t I have anything to say?–and realized having too much time on my hands has resulted in less being accomplished even though I really did not have any idea of what to say until now,

Before another incident of police brutality found its way onto “front page news” and we all gasped in collective horror as George Floyd lost his life, adding to an already unacceptably long list of others whose voices were silenced without cause,

Before we were reminded again of the marches we’ve marched, the petitions we’ve signed, the songs we’ve sung, the stances we’ve taken to honor our black brothers and sisters, valuing life as we are all children of God, hoping to one day overcome injustice,

Before peaceful protestors dispersed and then vandals and looters took over our cities,

Before windows were shattered along with the dreams of business owners who were finally going to be allowed to open their buildings after quarantine,

Before plywood would cover over a multitude of sins that artists would embellish, making the ugliness a little less painful,

South Elm Street, Greensboro, North Carolina

Before driving through my favorite part of Greensboro would bring me to tears,

Before I wondered if my youngest son will get to enjoy his college years away from home and compete again as a college athlete, if my middle son will be able to pursue his graduate program and eventually his career as a professional musician at a time when resuming playing his trumpet publicly has yet to be figured out, and how my oldest son will change the world once he has completed his graduate program–my two older sons planning to live in New York City to pursue their goals and live out their dreams,

Before I spent the better part of last week and will joyfully continue this week bingeing on The Great British Baking Show in all of its buttery, spongy, hilariously brilliant, God-save-the-queen glory,

Before the world changed, I went on a vacation to Florida to have a family reunion with my parents and sisters, to celebrate my mother’s 80th birthday . . .

My 80-year-old mother with her fruit tart and birthday carrot cake.
My family social distancing before we even knew what that was.
Me on vacation.

and it was lovely.

why lying is a bad idea and other life lessons

It takes a lot to make me angry. And I don’t mean a bit annoyed or somewhat discouraged. I mean seething. Fighting mad.

Life is filled with unexpected circumstances. We never know if we will be in a fender bender on the way to work or if a tree will fall on our house. Because so many situations are out of our control, on some level we learn to accept this as part of our daily challenges.

Bills come and go and if we’re smart, we set up a budget so that we are prepared to pay them. When one has lived in the same home over a period of years, let’s just say 20, it stands to reason that one’s water bill may remain a constant amount. In fact, when one’s children leave home, it should actually go down.

Imagine with me, if you will, the surprise I encountered when the February water bill had a total amount due of $387.51 when the January bill was only $29.92. Water bills reflect the activity of the month before, indicating that it was life as usual during December when everyone was home but suddenly when my husband and I went back to work in January, leaving only our dog at the house, something went terribly wrong.

We were told the meter had to be replaced in December. Ok, water company, change your meter. We don’t care. We were then alerted that the new meter recorded our January usage at 62,500 instead of the regular 1,900-2,000 gallons of monthly water usage. Wait a minute.

What I would imagine many gallons of water to look like.

We did our own meter test and called it in. As if they were going to take our word for it. Right.

What I would imagine the gallons of water we actually use looks like.

So this is when I called the water company and had a lovely chat with a customer service representative who said she would need to speak with her supervisor since something was way off with the amount of water the meter read. She got back on the phone, said she had reviewed the history of our water usage and her supervisor said he needed to go to corporate with this issue and she put our account on hold for 30 days. She then did the absolute worst thing anyone can ever do: SHE GAVE ME HOPE THAT THIS ISSUE WOULD MOST LIKELY BE RESOLVED.

Though we have not reached the 30-day mark for the hold, we received a new bill adding the $32.08 we owe for March and the $30.33 we owe for February to the original amount! I could not believe we now had a bill for over $440!

Certainly there had to be an error. That nice customer service lady had assured me . . . oh, I see what happened. She made up an answer that would end our discussion nicely. I would have hope. She would feel better about her job. With any luck, she would never have to speak to me again. There would be no day of reckoning.

Today I called and spoke with a different customer service representative who was not going to budge. “Yes, ma’am, I see the notes on your account. You are responsible for the bill.” She would speak to her supervisor and return to our call more determined than ever to let me know that my only recourse would be to have the water company come out to test the meter. If the meter is working correctly, guess what? Yes, I would be responsible to pay a bill that in no way reflects any amount of water we could ever possibly use during a one-month period!

Because I am not afraid to fight for what is right, I got to speak to the supervisor myself. I was told that our toilets were most likely leaking. Just during the month of January and then they miraculously healed themselves? Yes, she said. This sort of thing happens. Who knew? Or maybe the outdoor spigot was left on. In January? Yes, she said. I told her this was an outrageous error they had made and it was morally wrong to make us pay for it. She carefully moved along to the payment plan. I told her that amount of money was an impossible sum. She asked me how much I could pay. $30, you know, the amount of a regular monthly bill. Ok, so what about a payment plan? What about it. Our budget is what it is. I told her we could double our payment and start to pay off their mistake. She said it would take 14 months at that rate. Good. She said if ever we could pay a larger sum, that would be helpful. I have no intention of being helpful.

This toilet is not leaking either.

There are a couple of things at play here. One is obviously our lack of funds to handle much in the way of an unexpected bill. We have had enough of the unexpected to prove this theory. The other is false hope.

False hope is telling someone something that is either a lie or empty promise.

Being lied to or about is what always makes me angry. It is how my last two jobs ended: one after 11 years; the other after only two years and a half. Pretending that things are fine when they are not is deceptive. Making up stuff is also wrong. Telling someone one thing and doing another is unconscionable. We can always hope for a brighter future but making someone believe that future is most likely going to happen, well, that is why my breathing has not yet returned to normal. Call me naive. Call me whatever you want. Just don’t actually call me. I generally do not answer my phone. Yes, I forgive, even when apologies are not forthcoming. But that is not the point. The point is that the road to hell is paved with good intentions, so even if you don’t mean to lie, you are still going to hell if you do!

(Of course, I also believe in repentance and I’m not in charge so there is still hope for those who choose to lie. This is not false hope either, at least according to my belief system. In any case, handle your business.)

Truth is a tricky thing. We each have our own perspectives and opinions. We may all arrive at a different truth, the validity of each point intact. Sometimes it takes a court of law to come to a truth, and well, that isn’t foolproof either.

Maybe I should take some part of the blame. Maybe I should have never believed that the first customer service representative had any ability to do anything. For all I know she may never have even consulted a supervisor. It may have been customer service procedure to get a customer off the phone before anyone gets angry. The calls may be recorded and this one ended ever so nicely with false hope.

And the supervisor I spoke to today–well, she is getting paid to do just what she did. Listen to the raging customer, come up with an explanation regardless of how improbable, and set up the payment plan. Because at the end of the call there is only one thing that is going to happen: a payment will be forthcoming.

Like so many situations in life, there comes a point in which one is just simply screwed. Lies are believed for reasons that will never be fully understood. Lies are told and lives uprooted because some people just cannot be trusted. Gallons and gallons of mysterious water apparently come splashing out of an unbroken pipe to be measured by an unbroken meter so that someone other than the water company can be made responsible for them.

Maybe Nessie drank the water.

In the end, I’m grateful that I now work for a school and because of the coronavirus have some much needed time off to contemplate my life. I am grateful to have indoor plumbing and clean water, as much of the world does not. I am thankful that I have somehow again found my voice in the midst of adversity and can stand up for what I believe to be right.

One final note: I am looking forward to receiving compensation from our president during this time of pandemic, though believing that this will happen is problematic. No, I will not be using it to pay the water bill. I will instead apply it directly to what the Internal Revenue Service says we owe on unpaid taxes with calculated interest since 2016 we did not find out about until two years after the so-called fact! We paid our taxes and I fought with customer service representative after customer service representative for nearly a year. Can you imagine a worse job than working for the IRS? Can you even conceive of someone calling in who is not upset? I sent in processed checks proving we had paid. We had our accountant intervene on our behalf though he warned us that in the end they will never stop until the bill is paid. In full. Whether or not we actually owe the money. He did not give us false hope. He told us the grim reality and though it doesn’t sound pretty, I am always grateful for someone who respects me enough to tell me the truth.

There are just some things in life that cannot be helped. Death and taxes, false hope given by people who cannot seem to keep themselves from giving it, and water bills that just flat do not make any sense.

Breathing normally now. Rant over. 

friends, best friends

Friendships begin and end for as many reasons as there are people on this planet. We move, we change, we grow beyond the confines of what kept us talking to the person to begin with. Some friendships are deeply fulfilling and make us feel less alone in the world. It is when that sort of friend goes away that it is more like a death to be mourned than just another passing thought. When someone who has walked beside one for decades chooses to stop, the loss is profound.

It was not the kind of friendship that happens when two people discover they have something in common because this friend of mine and I actually did not share much. She liked jazz; I was listening to The Rolling Stones. She was more of an indoor girl whereas I have found great joy in nature. Her family moved into one of the nicer Detroit suburbs while my family has farmed family land in rural western Michigan for generations. Our paths would eventually cross as I was self-destructing in my single dorm room at Michigan State University, and she was the one down the hall who would slide notes under my door to let me know that someone cared. I was never quite certain if she really wanted to know me or if she was just doing her duty as a good Christian.

There are times in life when the God you have been looking for shows up, even for a moment. After a particularly dark night of considering what was happening in the life of my family, I would find out that though the doctors had no explanation of why, my dad was going to live. I decided this was the miracle for which I had prayed. I would accept that God loved me and knock on the door of the note-writer down the hall. She would run out and buy me a Bible so I could accompany her to her Bible study and begin again a whole new life.

I stopped drinking for one whole week.

After that I learned that God can forgive even those of us who struggle with just about everything.

The friendship would last the rest of the spring term and I would then have to say good-bye to my friend who would get married and move to Denver, Colorado. This probably would have ended most friendships, but when I struggled to figure out what I was going to do a year later when I was about to graduate, and there were further crises I would face, my friend invited me out for a two-week vacation of sorts that ended up lasting two years. I would travel with her band as a roadie, eventually settling into a series of dead-end jobs so that I could move off her couch into an apartment.

Being a student was way more fun than being a secretary or a waitress so I found a school that would give me a graduate assistantship and moved back east. There would be another profound crisis that my friend would help me work through in addition to her own. We would stay in touch through letter-writing and since we both enjoyed this form of communication, it worked out well. I chose to go back out west to do my internship at a magazine during the summer and was again able to spend time with my friend.

I miss the sound of typewriters but that is a whole different story than the one I’m telling.

After graduation I accepted a position on the east coast that did not mutually work out and would find myself testing out life briefly on the west coast before going back to Denver. (This brief California interlude was an attempt to maintain a friendship with a guy I had dated in graduate school, making me realize once and for all that it is really not possible to be friends with a guy after breaking up with him. It was also not sustainable for me to live in a house with a group of people involved in comic book production who supposedly had something to do with Teenage Mutant Ninja Turtles and one night ordered a pizza with garlic and anchovies that was completely inedible. Hunger motivated me to try harder to find a better job.) It would be a relatively short time before I would meet the man I would marry and move from my studio apartment with the Murphy wall bed into his house. My friend’s marriage was ending as mine was beginning and she already had a child by that time. We had less in common than we ever had. She shouted at me one day over the phone and said she was done with me. For three years I hoped she would change her mind. Right before we left Colorado to move back east I contacted her so we could leave each other in peace. She agreed to meet me at a park. I had my own child by that time and was beginning to understand motherhood and marriage in a different context. We decided to continue to stay in touch through letters.

Letter writing transformed into emails as technology advanced. We continued to keep each other updated about our lives. She remarried and had another child. I would lose one and have two more. We would write as we were able.

I used to have one of these.

It would take me seven years before I could go back to visit my friend and take a memory tour of the place I once lived. It was a wonderful trip that made me realize that I would most likely never live there again. My home was North Carolina.

After that time life took over and as it is with friendships, they come after spouses and children. I never meant to leave friendships behind and was always grateful for those who would continue to remain in touch even though it seemed like I was always at a soccer game or making dinner. Life with my family was the main course; friends were an appetizer or a snack once in awhile. I knew I could not expect much when I had so little time to offer.

I got to see my friend again when her mother died and she asked me to accompany her to the memorial service in Georgia. She said that I grieved well and was the only friend she could imagine inviting for such an occasion. We had a wonderful girlfriend weekend in Asheville afterward. She had come to visit a couple of other times; once she accompanied her son who was doing college visits. Though we did not see each other often or even email as much as we used to, I just figured she would always be a part of my life, like a sister.

After years of enjoying my part-time day job as a preschool teacher, major drama ensued and I had stories to share with my friend. She seemed entertained and I did not think much else about it. When I chose to leave the job, she offered encouragement. I felt like she was there for me, like she had always been. But little by little, she stopped sharing what she was going through and I knew less and less about her life: her marriage, her children, her career, her church.

When I began another more stressful job, it made for great storytelling and I would share the craziness of daily life in a dysfunctional office. She seemed less interested so I would try not to overwhelm with details. There was another friend who was beginning to share her work drama, so many of my stories were only heard by her. It is better to find someone who can relate to the stories without becoming burdened by them or trying to solve them like an equation. Some interactions just make good stories. It isn’t about “being negative” or judging people; it is about seeing them as characters in stories. As I’m writing this I’m realizing that maybe this coping mechanism is unique to me. I am unsure.

What has always confused me is the question: How are you? It is the most basic phrase used within social interaction and easy to answer, one may think. But for me, not so much.

A woman I worked with a long time ago explained it to me like this: The only acceptable answer to the question, “How are you?” is “Great!” It is the only answer anyone wants to hear. But what if that is a lie?, I would protest. Doesn’t matter, she would say. You are always supposed to give the acceptable answer.

I learned how to answer the question correctly, when I had to, but would save the real answer for my friend. I thought that was a part of friendship: telling the truth. I didn’t see it as “being negative,” which, by the way, also confuses me, which is why I put it in quotes. I do not understand what it means.

As I came to the conclusion that my job was heading me nowhere fast, except into greater drama, trauma, and bad health, I made the decision to leave. Much to my amazement, another job was waiting for me and I was hired on the spot. I then had to construct an exit strategy which took a lot of prayer and advice-seeking from many, including my friend. I then wrote a letter to the staff and left.

This maneuver, however, did not sit well with my friend. She suddenly was not writing words of encouragement, but was scolding me for making what she decided were bad decisions. She was making statements about my character she could not really speak to because she no longer knew me in the context of my life as it is today. Also lost on her was the fact that I now work in a right-to-work state in which an employee can be terminated the same day she gives notice, without legal obligation by the employer to pay for the two weeks. It is not uncommon to leave without notice, though naturally one likes to look good. I could not afford to do anything but protect my own interests and those of my family, leaving in what was considered a career-ending move–if that job had in any way been a career. I liked the actual work; the rest of it was unacceptable.

We had changed, my friend and I. We had lived our lives apart for decades. We had different points of view we had not had to confront. We no longer knew how the other one thought, and that became painfully clear as we exchanged emails and tried to understand one another. She was only trying to help, she said, as she took my issues to a place where she believed they began, before she even knew me. I regretted confiding in the person I thought was rooting for me from the sidelines of my life. To look over and not find her cheering made me feel alone and unloved. I felt shame.

She then said she was only interested in having an “historical friendship” with me. I had no idea what that was. Did she want to only remember me as a journalism student? What about a newlywed? A new mom? Which part of my history was acceptable for her to relate with? And how does this work since I am still here–breathing?

Devastated, I went to counseling. For six months my friend remained silent. I knew our friendship had ended. But then my husband was diagnosed with ALS, a disease with no cause, no treatment, and no cure. In a moment of weakness, and possibly because it was Christmas, I sent my “former” friend my Christmas letter, as she has been on my list for the past 30 plus years. I did not expect to hear from her.

I then receive an email in which she is still addressing me by the nickname she gave me in college: Melba. She is speaking to me like we just had coffee yesterday and is expressing what seems to be an awful lot of positive emotion for someone who did not want to hear from me again. After careful reading and rereading and reading a few more times, I notice that I am nowhere in the email. It is as if I have gone invisible or maybe “historical,” again, and am not mentioned in the least. Was she grieving over our friendship ending in the same way that she was now grieving over the inevitable demise of my husband? No. She was not. She did, however, decide that I needed to be reminded that God is still on the throne, as if all of my faith had blown away in the breeze when I received life-altering news. She recommended a book on heaven that promised to give comfort. It is not the afterlife I am worried about. It is the life I am living today, as an historical person.

an historical person named Nellie Melba

I let it go. It was, after all, Christmas. I could move on in Christmas cheer. I knew I could. Six months of mourning and who knows how much money spent on the counselor. I could do this thing.

But then, since she had already “unfriended” us, she must have googled our Facebook accounts, my husband’s and mine, because there she was contributing to the birthday fundraiser on his page that was asking for money for research of the disease he is going to die from, and she was reading my blog that told the story of our lives up to the point that we arrived at his diagnosis. She even went as far as commenting on my blog. What is really great about this blog, though, is whenever someone comments, I am sent an email in which I have the option to accept or delete the comment. Until I decide, the comment is “pending” which was where our friendship was.

I would not have answered her comment but she mentioned the email in it making me think she was hoping I would respond. Maybe she had a change of heart, I foolishly thought. Maybe our friendship could be reconciled. I have no idea how I could come up with any hope at this point, yet there it was. Maybe I was not the negative person she had me pegged for. Maybe historical people have greater insight. Maybe I had grown in faith way beyond what she thought I was ever capable of doing. Maybe she really does not know me at all.

In what I thought was probably my very last chance, I poured out my heart in the most vulnerable way possible, expressing that my bottom line was that I needed an explanation. I needed to know why above everything else. Why was she choosing not to tell me why we could no longer be friends? Or was she? What was it that finally caused her to walk away, like she said she had to do, and not only that but walk away without feeling anything? She had come to think of me with indifference, she said, even though her email was the angriest email I may have ever received.

All she would say was that she would have been a monster to not comment on the tragic news about my husband.

If you are reading this and suddenly remember that an ex-friend, ex-husband, ex-lover, or ex-anyone else is experiencing tremendous loss, do that ex-person an enormous favor and do NOT send your condolences. Trust me, it does not help.

I responded by saying that she was already a monster of the very worst kind–the kind who thought she could come out of hiding to shed a sympathetic tear after earlier walking away from a friend with indifference instead of giving an explanation or offering any hope of reconciliation. I ended by saying that if she did not want to hear from me again that she should stop contacting me. That I was praying for her, which was what she always said to me. And that I hoped God would heal her and when he did, I would be there. I knew this would just make her angry, but I said it anyway. I could not say there would never be any hope. I cannot say that to anyone. I always leave the door open. Even when that allows it to get slammed in my face.

Looking online for the explanation I needed, I came across a well-written article in The Atlantic by Julie Beck who wrote: “If you never see your friends in person, you’re not really sharing experiences so much as just keeping each other updated on your separate lives. It becomes a relationship based on storytelling rather than shared living—not bad, just not the same.”

Eureka!, I thought, in my typical nerdy way. This was the answer! This is how we had been conducting our friendship for many, many years, and it was not enough. For her.

This was when I realized that storytelling is enough for me. I live to write the story, to read the story, to live the story. I spent a great deal of my childhood alone, making friends with the characters in the books I read. As I grew, the characters in the movies I watched have and do keep me company. I know I am unusual in this regard. But it suddenly made so much sense as to why having a long-distance friendship would no longer be of any use to someone.

Or maybe it is just this one friend who does not want to go on, considering that we cannot see each other often enough. There are friends from where I grew up that I am still able to visit and feel a lot of love for. Friends who weathered those fierce Michigan winters with me with lake effect snowfall and unbelievably cold temperatures from Halloween to Easter. Friends who lived in or near a town of 2,000 people who understood that one had to drive 40 miles to go out to a movie or out to dinner. Friends who knew everyone in the area and were related to many of them. Friends who know me and love me even after I moved away and have now lived in the state of North Carolina longer than I ever lived in my home state of Michigan. This shared history is what keeps our friendships alive; these friendships are truly historical!

My friend is not like me. She prefers to be with friends she can see often. I am unaware of her historical friendships, but she probably has a few. Like it was impossible being friends with the guy I once dated, it is impossible to change the status of a friendship from close to something indefinable or unrecognizable. “I can love you without having you in my life and that is what I have chosen,” is how she ended her last email before telling me she was praying for me and wishing me well. It does not feel much like love, but it is ok and maybe even healthy at this point since it is closer to the truth. And we can tell the truth. We are no longer caught in the sentiment of Christmas. It is a whole new year, a new decade even.

the monster who has come to live with us, aka ALS

My husband, Lee, and I took the trip of a lifetime to Benin, West Africa, to visit our son, Gabriel, who was in the Peace Corps, a year ago last summer, and it was there that a new chapter in our lives would begin.

We were drinking beer and eating dinner at a restaurant/bar which was more like an outdoor patio when Lee excused himself to use the restroom. Since this was Benin, there was no restroom, indoor plumbing or clean water, so he did what everyone else did and headed for a stand of trees out back. Soon thereafter I heard people shouting in French, their native language, and though I could not quickly translate everything, something bad had obviously happened.

Gabriel who spoke French fluently by that time knew immediately what had happened. Lee had fallen and was face down on cement with a pool of blood flowing around his head. Gabriel would ask me to remain seated while I contemplated whether or not I was now a widow. Gabriel would lift his father off the ground, retrieve his broken glasses and contemplate our next move. A man was motioning us to get into his car. I had not noticed that a man with a car had even existed until that moment. Unlike our city streets, lined with cars every day, the only people in this African town who had cars were taxi drivers and the cars were old and beat up, unlike this man’s car which seemed new and in great condition. I was not sure why someone with a good car with nice interior would want a man with a head wound bleeding profusely to get into his car, but we did not ask questions.

He drove us to a medical center, a Beninese version of urgent care, and Gabriel and I managed to walk Lee in to see a doctor. I was not sure how we were going to pay for this unexpected medical expense. Gabriel went to talk to the personnel on duty. It would cost 26 American dollars to have stitches. No waiting, an affordable price, no guarantee that things would go well afterward, but it was what we had and we took it. We would walk back to the restaurant to pay our bill on our way to the hotel which offered sheets that were in need of cleaning and a bucket flush toilet. The risk of infection was real.

toasting to Benin with local moonshine

Though many of the steps constructed in Benin were of differing heights, making walking down a stairway a challenge, I could not figure out why my husband had not tried to catch himself on the way down. When we returned from the trip and he went running at the local park and fell, opening the wound from his first fall, I again wondered why he was falling on his face and not able to catch himself.

Blame it on the dog pulling too much, not being in good enough shape, whatever seemed like an reasonable explanation at the time, and a man who had run 13 marathons was now unable to run without falling. He realized in horror that his legs were giving out underneath him and the real reason he was falling was because his body was giving him no notice that he was about to fall, and so he fell. Repeatedly. Deciding not to give in to this, Lee got out his bicycle.

a man and his bicycle

Fitting the bicycle with lower gears, Lee was certain he could somehow get back into the shape he told himself he had lost. I started noticing scrapes and bruises and he finally admitted to me that he was falling on his bicycle. In the middle of the road! And random people were helping him up. This is when we had our come-to-Jesus discussion. I was not sure what was happening but the thought of him sprawled out on the road while someone who was not paying any attention ran over him was more than I could bear. Many people are not bicycle-friendly out in the county where we live and running a cyclist off the road is not unheard of. But this was a whole other situation.

When it was time for Lee’s annual physical, we knew the doctor could figure this out. Maybe it was a blood-flow problem that could be corrected with medication. Maybe back surgery was needed to correct some kind of nerve damage. Surely there would be a treatment plan and a path to recovery.

Lee was referred to a neurologist. The appointment would conflict with our beach trip to the Outer Banks and though it is a six-hour drive out to my favorite place in North Carolina, Lee took me to the Banks, helped me set up the tent, and then made the trip back to Greensboro to go to the appointment in nearby Winston-Salem before driving back. I am not sure how one has a come-to-Jesus talk with, well, Jesus, but when one is at the beach alone, that is sort of what happens. I did a lot of walking, a lot of talking, a lot of praying.

Every test that was run indicated worse results. It seemed that the pace in which we were receiving this information was quickening. There was no pause to consider what was happening. It was like those movies with the runaway boxcar and the people inside hoping to be rescued before careening off a cliff. But there we were in the boxcar. There was the cliff ahead. And there was no rescue in sight.

By the end of the summer, Lee’s legs had significantly weakened and he had gone to his principal to talk about retirement from his position as an AP chemistry teacher at a local high school. The principal offered to give him his parking spot in front of the school and said he would offer any assistance necessary. Lee could work through his final year, since retirement was already close at hand. But into the semester he knew working through the year was more than he could promise. He had already been forced to give up the catering he had enjoyed doing for over 20 years. The fatigue, which is part of the disease, is now part of his daily life. Going to bed exhausted and waking up in the same condition is new and different. Taking naps does nothing to ward it off either. A new unwelcome normal has taken over.

September 10, 2019, I would be driving to work at the private school where I teach preschool and Lee would be driving back from the clinic at Wake Forest where he had seen the specialist, receiving the second opinion and the final diagnosis. I was not sure having this conversation while we were both driving to our respective schools was a great idea, but by this point we already knew. Amyotrophic Lateral Sclerosis, aka ALS. Still on the runaway boxcar, still heading toward the cliff, I contemplated this reality but felt like it belonged to someone else. Like an out-of-body experience. Like I was watching the people in the boxcar and could do absolutely nothing but watch the boxcar plunge over the cliff and break into a million pieces.

Our plan had been for Lee to retire from the school system and take a part-time position teaching science at the private school where I work, in addition to working part-time at the bicycle shop where he knows the owner and knows bicycles even more. He would continue catering and we would take more amazing trips like the one we took in Africa. Getting a passport and then having it stamped was so much fun we wanted to do it again! We still have not been to Europe! We hope to make it back to Colorado, where we met, married and had our first son.

We would first tell our three sons, my two sisters, and wait until my parents came through on their annual pilgrimage from Michigan to Florida to tell them. How does one go about explaining that the healthiest person they have ever known is quickly becoming disabled? How does any of this make any sense?

We would tell the people at church: the governing body at the church of which we are both members, his Sunday school class, the choir I am in. Little by little word got out. We would tell friends in person, through email, through messaging, over the phone, in my annual Christmas letter. Today it appeared on my Facebook page as Lee decided it was time. It is time. It also will never be time. It is real and yet sometimes he dreams he is running. Sometimes I dream that he is, too.

marathon runner

It is not easy being the person with the disabling disease that has no cause, no treatment or no cure. It is also not easy being that person’s wife. We have been offered all kinds of words to encourage us, scriptures on which to ponder, alternative approaches to improve one’s health. We are being held up in prayer, held onto in the arms of those who want to somehow take away some of the pain, held by the spirit of what we believe is God. We do not know how to feel or what to do most of the time. Our bucket list has had to be re-written, our hopes and dreams re-defined. We knew we were getting older, but this is not a scenario we had ever considered. Is it better to know how one is going to die or better for someone to die suddenly? What kind of death is preferred? Does talking about death somehow lessen the finality of loss? We can ask all the questions in the world. The answer is always: love. We are loved. We do not know why any of this is happening. We only know that we are loved.

If you have been my friend for any length of time you may be wondering why I have not been more forthcoming with this information. Because I did not want to, is about the only excuse I can come up with. It is painful to consider and talking about it has been tough. I tend to post quotes and art to express grief and healing because I am the kind of person who feels things deeply. And yet, my faith is as strong as it has always been. I do not walk alone through this particular darkness. I have never truly been alone, nor will I ever be. Seeing someone I love fall apart piece by piece is the hardest thing I have ever done.

So there it is. The monster, as my husband describes it, that has come to live with us. A monster who is transforming my healthy husband into an invalid. A monster who can take away the normal functioning of his body but can never inhabit his mind or his spirit. Death is an inevitable conclusion for all of us. We do not get to choose when or how. We can only ever do the best we can with the time we have been given. Each day.

good-bye farmers market; hello new year

Saturday, December 21, 2019, will be my 32nd Saturday of this calendar year at the farmers’ market. It will also be my last.

I will get up at 5 a.m., take the dog out, drink coffee and contemplate life as I wake up to the reality of a new day. I will post something on Facebook, get dressed, brush my teeth and head out the door. I have sewn all I will sew for the season. Besides, my fingers hurt!

Pulling into the parking lot, I will lock up my vehicle and take with me my market bag with change for customers who will hand me a 20-dollar-bill for a 14-dollar bed bunny. I will head toward my table, greeting fellow vendors along the way. I will switch on the battery-operated string of lights on my bed spring tree and remove the burlap cloth covering the items left for sale. I will rearrange what I have, then sit on my red kitchen chair and drink more coffee. I will think about those I’ve known for the past 13 years and those I’ve only become acquainted with recently–vendors and customers alike. I will eat breakfast and consider how I have run an art business all of these years.

Walking around my neighborhood in the spring of 2006, a thought had occurred to me. “Make garlands,” the thought said. “What?! I’m a writer,” I answered. It was then that I remembered writing a short story about an old woman making Christmas ornaments out of old blankets: stars with hearts in the middle of them. Although the thought had made little sense to me, I made garlands anyway.

The garlands had small stars with hearts in the middle and small hearts with stars in the middle.

As writers often end up as characters in their own work, in my story I was both the old woman who was sewing and the young girl who had happened upon the little house near the edge of the woods. It has always amazed me how something so simple as a needle and thread worked into a piece of cloth can transform into something beautiful and make one feel loved. It reminds me of my mother who taught me to sew. Memory is preserved in the stitches.

Intrigued by the idea of actually making what I had written about in my story, I set about doing it. I had been sewing since I was 10 years old and I have always been drawn to the creative process. I wondered if I could sell what I made at the local farmers’ market and several months later would set up a table with tomato wire “trees” and egg cartons I used to display and package my heart and star garlands with tiny buttons, bells, wire and cord. I included the story with it and was surprised at how many I sold the first season. I named my business “dream with m.e.” inviting all to share in the wonder as I became a daily vendor.

It would take me a couple of years to figure out what to sell at other times of the year since the holiday season was only from October through December. My mother returned to me the bunny she had made when she bought the pattern listed in the back of a women’s magazine for 25 cents and made a toy for her first daughter. The bunny’s ear had been used for teething and though my memories do not extend back that far, the bunny looked like it had been well-loved. Bed bunnies emerged some time after that, giving me a year-round reason to spend Saturday mornings at the market.

bed bunnies

For seven years I moved from table to table, wherever I was assigned each Saturday. I became acquainted with farmers, bakers, and crafters. Some, vendors for generations. Others, trying it out to see if what they had created would sell. Would their items spark joy? A satisfying experience? Fulfillment? Would the customer come back for more? And tell his or her friends to visit?

The demand for tables was so high that when I asked how I could secure a permanent table I was told that someone would have to die. (!) Daily vendors would arrive at the market by 5:30 a.m. and stand in line, sometimes outside, sometimes for half an hour. It was first come, first serve. The market manager at the time knew that my primary items were for Christmas and he would always find a way for me to get a table. When I was asked to serve on the vendor advisory committee, he is the one who would recommend to his successor that I be given an annual table. “How long have you been a daily vendor?” she asked. “Seven years,” I said. “Which table would you like?” I had paid my dues.

Life was easier with an annual table since as long as I came on consecutive Saturdays, I could leave my display on my table and store my items under my table or in a storage closet. My displays could become more elaborate, culminating with a bed spring I had one of my sons jump on with me bending it into a “tree,” perfect for hanging ornaments. I would fasten it to a small, round table that I learned the hard way needed to be also tied securely to the table as I would discover one morning that it had been tipped over. A friend would joke how I endangered the safety of my customers with dangerous wires precariously positioned, but my customers did not seem to mind. It is a display that draws people to my table and can be seen across the room as a beacon for those who wish to find me. A unique piece of art all on its own.

Times change and this year my sales dropped significantly. Customers who used to visit me frequently, apparently stopped coming to the market altogether. I began to wonder if it was time for me to pack it up and go home.

During a routine table inspection, I was told that my display did not comply with current guidelines. I came to understand that the guidelines had changed and I had not taken the time to read the fine print. I had been using these same display pieces for over a decade and suddenly was not sure I wanted to change everything. Though nothing more was said to me to get me to adapt to new rules, neither were photos of my work posted any longer as a representation of what could be purchased at the market. It was a subtle yet effective way of taking a step away from me, reducing my feelings of being a part of this historical family to those of an uncomfortable working relationship in which I do not belong. In talking with other vendors, I knew I was not alone in feeling this way. Is this the best venue for artists? I already knew the answer.

What finally convinced me that the farmers’ market is not where I need to be is the new food security program designed to bring more food vendors and farmers into the market to benefit those in need of assistance. I am in support of this type of program, and there was a time 20 or so years ago when I was on it, too. I appreciate offering help for those in need, but ever since this program started, my customers began to disappear. What I create some would argue is not a necessary item for survival. But art is life! And artists need to eat, too!

In light of all of this, I have chosen not to renew my annual table. I do not wish to comply with possible longer future lists of guidelines. I do not want to be reminded via loud speaker to put the market cart away or park in the proper parking spot. I do not need to hear the bell rung at the beginning of market or the end to feel complete. The market seems to have taken on a life of its own with its endless fundraisers to “benefit the market” and I will not miss seeing the looks on the vendors’ faces as they have to compete with those who are supposed to be there for the benefit of the vendors, not themselves or any nonprofit program. How the market ever changed from a gathering of vendors selling produce, baked goods, food products, flowers, and art, to a pancake-of-the-day event happened gradually, but I have finally caught up with it. I am one of the last of the annual table crafters. Once I give up my table, I was told I will never get it back. There would have been a time when that reality would have bothered me. Now I feel nothing but relief.

When the clock strikes noon, I will place whatever is remaining in a box and load it into my car. I will ask whomever is near me to help me take down the bed spring tree since it is the one thing I have never been able to do by myself. I will then drag it across the cement floor and load it ever so carefully into my vehicle, take it home and put it behind the shed where it can continue to gloriously rust.

Looking around my messy room where I create, I will simply close the door and walk to my kitchen where ingredients for all kinds of delicious wonderment clamor for my attention.

My business is not going away. I will just not be selling at the market. After my long winter’s nap, or more realistically an intervening time in which I will do more reading than sewing, I will look into other options: perhaps a website or store placement. I will also post items occasionally on Facebook which has been an effective selling tool. I hope to do more art shows and I am already planning to be in one the first Sunday in May. I will alert everyone when it is time.

As for right now, there is nothing more I need to think about. It is Christmas and all of my boys are home.

lost but not forgotten

A couple of weeks ago, I happened to reach up to touch my earrings momentarily for no specific reason, and suddenly realize one of them is missing. I consider it may be stuck in my hair since that sort of thing happens sometimes, but not finding it there I go to the classroom where I spend the most amount of time during the day to look. It must have lodged itself in the fibers of my woolen wrap and is undoubtedly trapped, I tell myself. My searching, however, yields nothing. I keep my eyes on the floor, thinking I would see a glint of light reflecting from its one red bead that hangs from a tiny chain, but to no avail. I take a photo of the other earring and email it to a place I had been earlier in the day, thinking that perhaps it had dropped onto a chair. Maybe it would find its new home on the floor under said chair. Or in the hallway where it may yet be found. Or certainly in the bathroom. Or the parking lot. No one had turned it in.

What if a small child had picked it up thinking it would be fun to take it home and keep it for herself? What if a creative person saw it as the missing piece to his latest design? Maybe it was beyond saving, bent beyond recognition or shattered. It was only an earring. What was I thinking?!

Yet, I would continue to look for this earring, as crazy as that may be. I would follow totally made-up narratives in my head in which I would find the earring as I walked across the parking lot to the school where I work, but it would be off the beaten path, moved to a different location by a bird, perhaps. I had notified the woman who works at the front desk to be on the look out for it. Surely someone would be able to pick out a tiny red bead in the midst of piles of red and orange leaves. Yeah, right. Why did it matter so much to me?

It is not as though I have not lost anything. I have. Sometimes the thing in question is found. Sometimes it is lost forever. I have also found things that have been lost by others and wonder how it happened. One earring on the side of the road: was it the result of a careless hair toss? When she realized she lost it, did she care? Did she re-trace her steps to find it? Did whatever it was have any significance to her? Would her life be in any way changed without it?

I had purchased the earring from an artist at an art show in which I had participated a couple of years ago. There was nothing particularly stunning or even valuable about the earring. I paid little for it. It was probably worth almost nothing. But for some reason, I liked it. Red is my favorite color and it was the perfect color of red. It was not overpowering as far as jewelry goes and also apparently easy to lose. It may have had more against it than for it in the end, but nevertheless, I was sad to see it go.

Today I revisited the place in which I had considered I may have lost it and actually gave thought to the earring, as silly as it was to consider that I would ever find it. It reminded me of the parable of the lost coin and how the woman searched the entire house for this one coin, even though she had other coins. The story was told in the Bible to remind us that God would do the same for any one of us–searching for us until we could be found. Even though many others may be counted as members of the family of God, the idea that everything would be put on hold until this one person was found has meant more to me than I can even express or understand.

An hour or so later I walked into my classroom and one of my co-workers reached down and said, “Is this yours?” A play mat had to be rearranged unearthing my lost earring. I felt such joy! It was ridiculous to be happy about something so insignificant and yet, I somehow felt more loved. By God even.

I felt like in the midst of a life that has been anything but easy, finding this earring reminded me of how God did not give up on finding me. And when I wander away, even now, I am still worth the effort it takes to bring me back.

I was lost but now am found, was blind but now I see. Amen.

when life takes away your aisle . . .

About a mile from the craft show where I was hoping my hard work and creativity would pay off, a thought barged its way through my head suddenly–the kind of thought that is more like a premonition or possibly even a warning from the Almighty. It went something like this: take a deep breath and know that you can handle whatever awaits you there.

I remembered the last time this sort of thing happened. I was on the same stretch of road early on a Saturday morning and approached the market where I would be selling my art with hesitation. Something had happened and it would only take me a moment to figure out what it was as I looked at the “bed springs” tree I had fashioned with the help of my son years ago in the back yard. He had told me it would never work as we jumped on it so I could strap it together and form it into the shape of a tree I would use to hang my handmade ornaments on during the holiday season. Though the tree had been tied to a small, round table, the entire thing had undoubtedly tipped over as one string of lights was smashed, the garlands were all bunched up in the front, and the star on top was no longer standing upright. No one would make eye contact with me as I surveyed the damage. No one came up to me to say they witnessed the toppling of my tree, which must have made quite a crash. As I spent the next hour making right all that had gone wrong, a farmer eventually got up the nerve to apologize for knocking it over, and though I was not pleased he had been so careless, it softened the blow to know the truth. It did not help that I was not ready for the market when it opened, but fortunately I was not scolded or worse, fined.

So I was prepared for something equally terrible awaiting me, as I parked my vehicle and grabbed the items I would be working on while selling the items already on display. I saw a woman whose son had gone to the preschool where I used to work and we had a brief conversation while she spread out her beautifully made pillows. I then saw a woman whose daughter, a Peace Corps Volunteer, had remained for a third year in the same country where my son had served. We talked of her daughter coming home next month and as she strolled with me to my table I suddenly became aware of why I had the strange feeling on my way over.

my table on a regular market day

Before we get to that, here is a photo of my table on a regular market day. From this photo it is clear that I have one end of the table and another vendor has the other end. In this photo there is an aisle next to my table that enables me to go to and from my table and come out to see my customers. It does not fully show how close the table next to mine is but suffice it to say there is plenty of room for both vendors to conduct business. I have a small chair that I use to sit behind that end of the table and all is well as I sell what I have made to those who desire a handmade piece of fiber art.

When I reached my table on the day of the show, however, the table next to me was pushed all the way over, eliminating an aisle altogether. I had absolutely no access to my table or any way of conducting business! This was a first!

My conversation with the Peace Corps mom ended abruptly as I found the event coordinator to explain my dilemma. Not understanding what I was explaining, I asked her to accompany me to my table. She said the table was pushed up against my table because another table was needed in the row. I explained that I could not squeeze through the two inches that were allotted to me and I would need more room. I was not sure if I was more horrified that there was no aisle or that she thought it was ok for me to have no aisle. She said, “We prefer that you sell over your table and not in the aisle.” Aisle? What aisle? I did not even have a way to get behind my table!

my table

There had been an impromptu discussion with me earlier in the year about my lack of compliance with guidelines I had ignored since I had not read the fine print and had assumed that everything was as it had been during my 13-year tenure of selling at this market. The guidelines, however, had changed this year and my display racks were no longer in compliance with the idea that items were only to be 21 inches above the table or above 5 feet or so, as in signage. I considered obtaining an average vegetable stand to display the bed bunnies, my most popular item, but was told I would be allowed to bring my bed springs tree since everyone has known that it is what I do at this time of year. So it stung when I was told that I was supposed to sell over my table when it clearly is not possible. Yes, you can bring your tree. No, it will not be possible for you to do business.

a normal aisle
the aisle I was given

The event manager obviously had to do something so she pushed the tables over, a little.

It was now possible for me to reach my table, as long as I walked sideways, breathing in as I did so. I was so glad I had lost weight recently! The woman doing business at the table next to me was young and thin, and not at all bothered that we would have to be sharing this tiny portal. She displayed her body butter and scrubs on her table in such a way that she could sell over her table like a compliant vendor. She was not breaking the rules, as I, unfortunately, am apt to do.

The vendors behind me, selling the CBD products were friendly and easy to get along with. They even bought my cat I had made from an old quilt. The young woman on the other side of the table smiled occasionally even though I am not sure she was selling any art, and we all made the best of it.

I would not find out until much later that adult beverages were being sold in another room. It was good this information was not forthcoming as I may have been tempted. I would wait until after hours of enduring the sideways stretch through my too-narrow aisle before I would meet my husband at a local brew pub and we would put to rest the day.

In the spirit of life giving one lemons, I guess I have to say, “When life takes away your aisle, speak up and make a path!” It does not make selling your wares any more effective, but it does at least make it possible for you to venture out for food and bathroom visits without having to crawl under your table!

come fly with me

Taking one last look around the beautifully decorated bedroom in the log home where my friends graciously invited me to stay, I head out in the dark to my rental car. Leaving the village of Pentwater, Michigan is always difficult as the crisp, fresh water of Lake Michigan beckons as much now as it always has. But I needed to get to the Muskegon County Airport as soon as I could to catch a flight that would connect with the Chicago flight to get me back home to Greensboro, North Carolina.

Nearing Muskegon I suddenly realize I need to stop at a gas station to make sure the tank is full when I turn it in. I decide to not get coffee since I would soon be in Chicago for a long layover and would have plenty of time for that. Scenes from the class reunion the night before and consideration of the friendships that continue to live on inhabit my thoughts as I make my way into the airport parking lot to return the car. I drop the keys in the lock box on the way inside.

Several men in uniforms are walking toward the one gate in this tiny airport as one calls out, “Are you supposed to be on this flight?” I give an affirmative response. Why else would I be at this airport at this hour? One of the men then says, “You aren’t going to make it,” and I think it is a bit early to be making jokes.

Nearing the gate, a woman runs past me to scan her bag and board the plane. I, however, am stopped. You cannot get on the plane, I am told. I am not quite awake. I must not have heard correctly. I am asked to show my ID and after the TSA agent goes to a computer to check out my status apparently, he makes the decision not to let me continue. He tells me I did not arrive on time. I had walked into the airport at 5:35 for a flight leaving at 6:05. I was not able to print out a boarding pass in advance because I had purchased the cheapest possible ticket, making things less convenient but generally not a problem. There were at least four TSA/airline employees. It would have taken about a minute to print out the boarding pass and another couple of minutes to scan my one backpack. I had no carry-on bag or checked luggage. I could have slipped off my sandals and jacket and would have been free to get on the plane. I was their only customer.

The TSA agent would tell me to wait until the airline representative came out so he could schedule me for another flight. I was surprised there was more than one flight a day out of an airport featuring one airline, one rental car company, one baggage claim area, and not much else. There appeared to have been a restaurant in the other remaining space that was now closed.

“Do you have anywhere to go or anyone to pick you up?,” the airline guy asks. Shouldn’t he have asked this sooner? No, I had turned in my rental car and it was Sunday morning a little after 6 a.m. Even the faithful who would attend the church I noticed on my way in were still in bed. I do not want to have friends or family make the drive to get me and then have to do it all again the next day. I need to find a way to get home.

I point out they had no food or even coffee to offer me. A woman from the back then appears with a coffee pot and a small paper Holiday Inn cup. I am then scheduled for the next and last flight of the day that will leave around 1 p.m.

I sit in stunned silence. I am the only one there. Customer service does not even include anyone checking on me . . . for the next six hours.

A small room with two chairs without arms that can be pushed together became my make-shift bed after my breakfast of Cheez-Its and M&Ms. There is an electrical outlet where I can charge my phone and another vending machine where one can purchase a two-dollar bottle of water. A sign on it states that five-dollar bills can be used, but the three ones owed me never come out of the slot.

I realize if I keep still, the light–activated by a motion sensor–will turn off, allowing me to sleep.

Awakened by a text message on my phone, I am informed that the flight I was rescheduled to take has been cancelled because of the storm that is beginning to rage outside. Getting up to see if anyone will check on me before perhaps closing the airport altogether, I see the airline representative behind the glass and start pounding on it with my fist until I get his attention. It is the TSA agent who greets me with a self-satisfied smile. “Hi. It’s me, your only customer,” I say with as much restraint as I have, making a mental note that his last name is Hildebrandt. He tells me he had nothing to do with the cancelled flight and I should talk to the airline guy who looks rather pale as he has to face me again.

The airline representative suggests I take a taxi forty miles to the next airport in Grand Rapids. Barely being able to afford the cheapest ticket and the rental car, I tell him I cannot pay for a taxi. He says if enough people show up for the cancelled flight, the airline will order a taxi for us. Who in their right mind would come to an airport that features two flights a day to Chicago when their phones would have already told them they would not be flying out that day? Fortunately, near 11:30 a.m., some of them came.

No one communicated what was happening next as I continued to prefer my own small room to the uncomfortable chairs out in the open area. Without warning or a chance to use the restroom, I am told my ride is there and I need to go immediately. I yank my phone out of the wall, later realizing the charging block would remain a permanent fixture in the outlet of that airport, or until someone finds it and takes it for his or her own.

As one of four passengers trying to return home, we share small talk about our journey. Asked where I had come from that morning, I said Pentwater. The man in the car knew where that was because he was from my hometown of Hart. When someone says they are from my hometown, I generally know who they are talking about since the population is around 2,000 and my relatives have been there for many generations. George Alexander Tate, my great, great grandfather was one of the early settlers.

The man’s parents’ names sound familiar and I was willing to bet my parents know them. When I give my maiden name he asks if I knew a guy with that last name with whom he had gone to school. The guy in question is my cousin.

Arriving at Grand Rapids International Airport around 1 p.m., my first priority is to find a restroom; my second is to find a decent cup of coffee. I then locate the gate where I will fly from Grand Rapids to Detroit at 5:46. I treat myself to an overpriced Greek yogurt and fruit snack since my only nutrition thus far had come from a vending machine.

I consider buying a book since I had long since finished the magazine I had brought with me, but decide I would be soon sleeping on the plane and have no time for reading. Someone from the airline makes an announcement regarding getting on an earlier flight to Detroit and I stand in line with the tiniest shred of hope. A man asks what I was doing in that line since he was looking for the next line himself, and I tell him I am going to the airline to beg for mercy. We both laugh; we both want to cry.

As was the theme of this adventure, I was too late. I would go back to the uncomfortable airline seating and wait to board, last as usual since I had the cheap fare and was not deserving of any kindness like those who had membership-type tickets or those who flew first-class.

The storm that had caused the flight to be cancelled in Muskegon, shut down Chicago’s O’Hare thus cancelling my connecting flight, and gave us a turbulent flight from Grand Rapids to Detroit, had now reached the Motor City. We headed down the runway to prepare for take-off at 8:30 p.m. and got in line behind several other planes with the same plan, as the rain and winds came in torrents and the lightning strikes gave us a spectacular light show. The longer we sat there, the more I considered the possibility that the flight plan would be aborted. With every announcement from the captain came more hesitation in his voice.

The line of storms would prevent us from flying from Detroit to Greensboro. The captain said we would have to return to the gate for refueling since we would have to take a “significantly longer route.” I consider the next airport I may be stranded at could be Atlanta.

By the time we reach the gate, after our two hours on the tarmac, the flight is cancelled. We then form a long line to get rescheduled. Since I had been sitting near the back of the plane, I am one of the last passengers in line. The phone charger station allows for one to charge a phone without the block, enabling future communication. There is yet hope for escape.

All flights to Greensboro are filled by the time it is my turn. The man next to me is given an early morning flight to Charlotte. It is now after midnight and I do not know if I can handle staying in the airport all night and getting a morning flight, so I opt for the only flight offered me: a 3:25 p.m. flight to Raleigh. My phone was dying and so was I. Well, not exactly, but my lack of sleep and the “Michigan salad” I had earlier were not much to go on. I try to send an email to my employer and for reasons unknown to me, the email will not “send.” I do not feel it is appropriate to call so late.

A couple of hours later I send the email while I wait for a hotel shuttle to take me to a Holiday Inn. The interactive information station enabled me to call to reserve a room. I am told the shuttle would come for me and had given my name and number. It takes me two hours to figure out that I was waiting in the wrong area and that no one was ever going to call me or call my name. I have to compete with the other weary travelers for a space on a shuttle. I call the hotel a couple more times and finally am told how to play this new game. I hail a shuttle and am taken to the hotel where there is yet another line. It is 2:30 a.m.

What I begin to notice with this new group of travelers is that most of them have absolutely no luggage. Where their belongings are is anyone’s guess. The airport had closed and no flights were going out, but unloading luggage was probably out of the question. The man behind me has nothing but the clothes he is wearing. He says he is getting a room so he can take a shower. He wishes he had a toothbrush.

When it is my turn, the woman at the desk asks for a hotel voucher that the airline never gave me and then pauses as her computer indicates there are no more rooms. She had already sent others back to the airport and I thought I was next. Suddenly a room appears on the screen and it becomes my new home–possibly the last room available anywhere nearby.

Waking at 9:40 a.m. I get ready as soon as I can. I had already missed the complimentary breakfast but fortunately the coffee had not yet run out. My phone is on one percent as I ask the woman at the front desk for a charger. This enables me to call my husband who had already gone to the Greensboro airport the night before to pick me up. I would also have the pleasure of talking to my employer who could not understand why I had not called sooner or had prepared to have a substitute take my place. It is all I can do to hold it together. No time to fall apart. Must get on that shuttle that I notice parked outside with no warning . . . again.

Arriving at the Detroit airport around noon, I attempt to go through security. What I thought was a boarding pass is only a ticket saying I had been delayed. I am let out of the line to check in at a computer that will eventually indicate that a boarding pass could not be printed out and that I have to find assistance in another line elsewhere.

Boarding pass: check. Another reminder that my driver’s license is about to expire even though I have a temporary one until it comes in the mail: check. Toiletries taken out of backpack and placed in tub: check. Bag of dried cherries given to me by my sister for my birthday also placed in tub: check. Birkenstocks put next to tub, but not in tub, so that my feet can mingle with the millions of germs that live on airport floors: check. In the little room, stand on the yellow “feet” and put hands over head so that my body can be inspected for contraband: check. Get sent to a female official who looks like she is about to frisk me: check. Get to put myself back together and move on with my life: check.

My first order of business is again to find a decent cup of coffee since the hotel’s was somewhat lacking. I then need to charge my phone to a more reasonable level. I continued the conversation I had started with my husband that was cut short because of my need to get on the shuttle. I also contact my oldest son who had noticed some of my alarming posts on Facebook and wondered how I was enjoying the Detroit airport. I was enjoying it just fine. I wanted to go home.

Confident that I could again make calls, I unplug my phone and look around to find the gate where I am supposed to be. It dawns on me then that I had ended up in the wrong terminal and I find myself actually saying this out loud, like a woman gone mad. A much saner looking woman is sitting behind me, smiling. She must have overheard my conversations and definitely heard me trying to figure out where I was as she stands up to introduce herself as Joan, and replaces her pilot’s cap on her head. I had not noticed she was in uniform until then. She wanted to hear my story for herself and as we walked she reached over a counter to give me a bag of Cheez-Its and a small bottle of water which she said I needed. She recommends we stop at the help desk so I can hear from an airline representative that I cannot blame the airline for my own problems or anything that has happened to me. Pilot Joan actually intervenes on my behalf. The airline employee is a little less rude to her, but still will not budge. Pilot Joan tells me to write a letter. It is the one, best thing I am ever asked to do.

Pilot Joan rides the tram with me to my gate and we say our good-byes. For a few minutes I got to be treated like I mattered, like I did not deserve to be abandoned in an airport or waiting for a shuttle or in a hotel in an unfamiliar city. Pilot Joan deserves a raise.

When I board the last plane for my flight to Raleigh, the boarding pass flashes red and I am told to wait. I am literally not breathing. A couple of seconds later the monitor turns green without explanation. I would be allowed to board. I sit and wait for the plane to take off before I am willing to shut my eyes.

My husband is waiting with the car parked at the end of the pick-up area. A man monitoring the traffic says if I do not belong to him, he is going to make him move his car. A flight attendant says she thought my husband was there to see her. A sense of humor, yes, it is good to still have one. It is good to be home.

We arrive at our house at about 6:30 p.m. The eight-hour trip has taken 37 hours. I was already beginning to compose in my head the letter I would be writing to TSA Agent Hildebrandt, the Muskegon County Airport, United and Delta airlines; a story about customer service in our current day of air travel.

A friend pondered about why it was necessary for me to endure this journey. Did it have anything to teach me? Was there a specific reason or lesson to be learned?

If there is anything gained from this experience, it is this: our words matter as does the tone of voice we use to express them; whether or not we choose to look someone in the eye matters; the way we express who we are can make all the difference in the world to someone who is tired, hungry or in need. We all have choices. We can choose to help someone make the plane, or we can make certain the person is left behind. We can offer a cup of coffee, a bottle of water, a bag of Cheez-Its or we can keep whatever we have to ourselves. We can engage with others in conversation while passing the time as we share our journey with each other or we can remain in silence. Do not be like Mr. Hildebrandt; be like Pilot Joan.

We can be kind. It is possible.

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