I work with people who have ALS, also known as Lou Gehrig’s disease. The people I work with day in and day out, are dying from a disease that has no cure and no known cause. ALS impacts the way a person’s brain send messages to its muscles, and as the messages become more infrequent, the person loses the ability to use their hands, their arms, to walk, often to speak and ultimately to breathe. ALS is sometimes a long and slow process of watching a once active and vibrant person lose all body control and function.
While this disease is awful, I love what I do. Every single person I meet has a story to tell, and I am always so appreciative to be in a position to share some of the most intimate moments that come along with end of life with another human. The reality a person must face when they are dying brings with it fear, uncertainly and often clarity. With each person with ALS that I meet and each new way I see someone coping with this hand they have been dealt, the more I learn about the strength of the human spirit, and the differences in how people react to trauma and tragedy.
It is May of 2020 and we are deep in the midst of the COVID-19 pandemic. I have been working mostly from home since March 13th with a much unknown end faintly in sight. Our boys’ schools are shut down, summer camps are cancelled, the misinformation is flying all about and the level of uncertainly of what our future will bring continues to deepen. My mood shifts from being ever so grateful for this beautiful time of slowing down and deeply appreciating this extra time with my family to being so stressed by the uncertainly of the future that it feels difficult to even get out of bed.
I go to the grocery store on Monday or Tuesday nights to avoid the crowds. This week I was walking through the store and paused, looked around the store and saw everyone with masks and gloves, with people avoiding each other, food missing off shelves, paper product shelves stripped bare and I was overcome with sadness and thought, “this is not the way life should be”.
Working with people with ALS I have seen two pretty distinct differences between people who seem to cope positively (for the most part) with the disease and those who struggle the most. The biggest difference I have seen is between people who can't seem to see past the way their life *should* be and those who seem to let go of what should be and embrace the way life is, ALS and all.
This difference runs very, very deep. In the people I have seen, this difference is a fundamental difference of belief in life and living. The difference is truly astounding.
A man I became very close with following his diagnosis died earlier this year. He had ALS, but he did not die from ALS. I worked with him for about a year, and throughout that time we had many deep conversations about finding meaning in life. We talked about what he would be doing in life if it weren’t for ALS. He was active and vibrant and while he looked at others with the disease who seemed to be adjusting with awe, ultimately he knew he would never be able to cope with losing his function and dying from ALS.
He wrote me and said just that, he had no desire to die from ALS and instead chose to travel out of the country to pursue a physician-assisted death. We said our goodbyes and I was sad beyond measure over the loss of my friend. I also understood and respected his unwillingness to let go of what life *should* have been like for him. He died peacefully surrounded by his loving wife and daughter. His service was filled with people telling stories about his incredible life and with each story I understood even better why he and I liked each other so much. He visited me in a dream a couple of weeks after his death and when I woke from that dream, I felt like I understood life just a little bit more. I am so grateful for him and that life allowed me to walk alongside him for a short while.
So when I say that there is this difference between people who seem to be more able to move past what life should be like and those who are not able to so, I don’t mean that one way is better than the other. We are all made up of so many interesting characteristics, it is unreasonable to think it is as simple as bad or good, right or wrong. I do know that my friend worked hard toward accepting his disease and ultimately decided not to.
Working in a job where every person I am hoping to help is dying, I guess it is expected to also wonder how I might cope with a diagnosis or disease like ALS. My cancer diagnosis certainly tested my coping mechanisms and approach, but not to the extent something like ALS would.
I am a positive person deep down to my core. I genuinely believe that the universe is a friendly place and that anything that happens in my life is happening for me, not to me. I am currently in a rough place though. The state of the world in the midst of COVID-19 is a difficult place to be. I hear myself saying what should be happening and wishing things were different. My son's missed starring role in theater, the other son's baseball season, pre-pubescent exploration with friends, summer camp, birthday parties and winery trips. My first 50-mile race. I notice it being more difficult to concentrate and am losing focus. I am sad about the ways things are and unmotivated to try and change them. It’s an unfamiliar place and it is not enjoyable.
As I began to write this blog I googled “the way life should be” assuming someone probably wrote something along these lines before and it could provide some guidance as I wrapped my head around what I wanted to say. I did find a couple of quotes from a book of this same title that I have never heard of:
“I have found that the biggest moments in life, the ones that change everything, usually catch you by surprise.”
“Every decision I make is determined solely by the spark and limitations of my own perspective”
“It’s a longing for things to come, possibilities unfolding before me, the charged expectation of change.”
― Christina Baker Kline, The Way Life Should Be: A Novel
Those who know me well know I will probably never read the book since I have many unread (un-listened to?) books and unused credits on Audible, but these quotes hit home. As my days have blended together I have felt both desperate for certainty and bored by it beyond measure. It’s an interesting and frustrating dichotomy. I realized yesterday I needed to shake something up.
One thing that is on fire in my life right now is my running. I am pounding out the miles and feel so strong and trained. I am able to spend 2 long runs on trails on the weekends which is building my strength and confidence and helping me grow into a really strong long-distance runner.
I decided to get up early today, drive to my favorite running spot and throw down some mid-week trail miles. This is very unusual for me and it felt like a really special treat. This last quote seems to positively accompany this photo I took today as the sun was rising over what has become one of my very favorite places to visit.
“... I am halfway between two worlds, the known and the unknown. I feel as transparent as the wind, as if my spirit is hovering in the sky, waiting to land. I am driving toward a future I can't see, leaving behind a past that already feels distant. Nothing is clear - and yet the trees are sharp against the sky; I can see the hard outlines of everything.” ~ Christina Baker Kline
Cheers friends to accepting things as they are, while holding out hope they will soon return to the way we think they *should* be.