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.

20 thoughts on “the monster who has come to live with us, aka ALS

  1. I can’t even imagine what this is like. Praying for all of you – that you will continually feel the strong arms of Jesus holding you tight.

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  2. That was beautifully written. While not truly understanding what you must be going trough and to be honest such sorrow or pity I can’t help but also see the beauty of your family and the wonderful memories you have and will continue to make. My thoughts are with you.
    Julie

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  3. Promise me you will contact me. I so feel your pain. My recent situation is so similar to yours. This is all very heartbreaking for us both. Love you

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  4. Mary Ellen, I don’t know exactly know what to say, except my thoughts and prayers are definitely with you and Lee and your family. You are very special people and God has chosen Lee for this journey for a reason we may never understand. You will now be in my thoughts daily and I pray for a calm breeze along the way for Lee. My love is with you both.

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  5. Mary Ellen, my heart continues to ache while reading this post in the same way it did that Sunday early this fall when I learned the terrible news about Lee. Soon after that, I suggested to you, after a big hug and tears, that because of your talents with the written word, that you keep a Journal about this new journey you and Lee are now on. You nodded, and I think this fabulous post is an evidence of how you are coping with this monster. The solutions you are choosing are Faith, Hope and most of all, Love! Thank you so much for having the courage to express your deepest heartache through your words! Hang on to God each and every day, my dear, and He will keep you afloat! You are an inspiration to us all!

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  6. I can only say what has been said I am so sorry you have to go thru this. I pray God will indeed wrap his loving arms around Lee, you and the boys and help you to keep the faith. Our God id Good.

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  7. Praying and pleading for you all!! My heart aches 😢💔! Praying you feel the Lord’s presence more and more each day. But but hugs!

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  8. Mary Ellen, your blog is so beautifully written. I wish I had the words to convey all the emotions and memories that your story evokes. Just know that many are lifting you and Lee and your family in our prayers and are here to share this journey and fight the monster with you.

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  9. I can’t imagine what you are dealing with daily. Our thoughts and prayers are for you and your family as you redefine what it is to live. May you feel and continue to know the presence of God Almighty, for through him only is the peace and joy you seek. Much love for you

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