Saturday, October 10, 2020

Tenderness, Right Below the Surface

My friend J, who I have known for almost two years through my job, died from ALS about 2 weeks ago. I wrote most of what I am sharing shortly after he died, but I have been hesitant to share it here. For some reason I planned to sock it away and close this chapter quietly.

I am not sure why I am sharing it now. I love to write out my thoughts and I think it somehow creates closure for me to open up and share what I’m feeling. Perhaps sharing his story allows me to feel that others might know what an incredible person he was even though no one reading this knew him. Maybe sharing what’s on my heart will help carrying the weight of loss a little lighter. Maybe it’s all of these things for me. 

We can look at death as a relief or a tragedy, in depth or shallow, anticipated or a surprise and we can dive into what it means and how we should approach it and over complicate the whole conversation. Or we can say the simple and uncomplicated truth: my friend was here and now he is gone, and that makes me very sad. I honestly just miss my friend.

Right before his funeral, I read this article about end of life care. These two statements really stood out to me and spoke to why I feel so honored to be in the role I am in:

Providing end-of-life care is a privilege that is hard to choose. It is to choose to go down into the dark with another person, down into the deepest mysteries of the human experience. It is to share in the most difficult journey of a person’s life, a journey from which only one of you will return.

This is where all our work comes to its final fruition. This is where all the labels drop away, and we meet one another simply as humans, sharing the joy and grief, the gratitude and regret that is the common lot of mortals at their common end.

So here are some words about my friend, J.

Working with people who are dying is a privilege I hold very dear. When a person learns the news that they have a disease like ALS where there is no treatment and no cure, it is a traumatic experience. Relationships that begin in these types of situations can be very powerful. J and I connected immediately and had some of the deepest and most profound conversations about life, death, the meaning of it all and how end of life is for people. These are very deep and emotional conversations that made us close friends and confidants right from the beginning.

By the time I met J he had already lost enough use of his legs to need a power wheelchair, so I‘ve never actually seen him walk. He zipped around in that chair and still accessed all areas of his home thanks to his home-made ramps. During our first meeting we sat in his kitchen and looked out his back window at his large back yard, and as though we had known each other our whole lives, he began telling me the incredible loss he felt from no longer being able to do things like mow his lawn. He was so appreciative of his friends who showed up for him and completed tasks like this, but the loss he felt from no longer being able to do these things himself stung him to his core.

I remember having some preconceived notions about J. He was rough around the edges and seemed to take no bs from anyone. He was a construction worker type of man’s man with a hard outer core, so to see him so hurt by the loss of being able to care for things like his own lawn showed me a tenderness about him that I then saw every single time we visited. I feel so honored that he would share that part of himself with me.

It wasn’t long after that when I visited again that J was so excited to show me the adapted lawn mower he and his buddies designed. He said his friend took the racing seat right out of his car to make this lawn mower. I remember thinking how incredibly dangerous this contraption was. It didn’t matter though, once a person knows they are going to die, I mean we all know we are going to die eventually but once a person REALLY knows they are going to die, risk just has a different impact.

Another time I was at J’s house a buddy of his called collect from jail. He was on speaker phone so I heard most of their conversation, which wasn’t about anything in particular. When they hung up J said to me that he bets that was the first call I heard from jail. I laughed and said no and proceeded to tell him about two childhood friends who had also spent some time in the same city jail who used to call me collect regularly. I think he had some preconceived notions about me, too. And clearly I’ve always been drawn to those who, ahem, color outside the lines.

Earlier this year I visited with J when he was really sick. His significant other and I didn’t think he was going to make it through the weekend. He asked me what I thought happened to a person when they died. I told him that I wasn’t sure. I added that that every person I have ever been close to in my life who died, and there have been many, have visited me in a dream not long afterwards. Even my pets who I have lost visit me there. I told him I had no doubt that he would visit me too.

He pulled through that sickness and I was able to see him a few more times. One time, we were visiting at his kitchen table and his dad came to see him. I had never met his dad before so I was excited to hear some stories as we visited and J and his dad reminisced. J told a story about when he was a really little boy and he got angry with his brother about putting too much syrup on his waffles. Apparently J preferred lots of butter that fills all of the waffle squares and very little syrup. He was mad that his waffles had too much syrup and this somehow ended up with his brother convincing him to throw the waffle right at his mother’s face. He got in big trouble for that and sent to his room. His dad then came home and helped to ease the situation. It was a fun time hearing this story and I hope that his dad was able to enjoy the reminiscing, too.

I have worked with and met and counseled many people with ALS and they have impacted my life in many different ways. Knowing J has made an impact on me that I am having trouble putting into words. I think of him when I butter my waffles. I think of him when I talk with my other man’s man rough around the edges friends and wonder if their tenderness is right under the surface like J’s was. I think about the beautiful intimacy that developed between J and his significant other during quiet moments of caregiving that happened when no one else was around. I think about the joy and grief that go along with knowing I never would have met J if it weren’t for ALS, and knowing it was ALS that took him away from all of us who cared about him.

So for now I will be comforted by these memories and carry J’s spirit with me as I continue to fight to find a cure for this disease. I will wait patiently for him to visit me in that dream, where I will see him walking for the very first time, without the pain and loss that came along with ALS.


I know friends will wonder if I am okay and I really am. I have been anticipating J's death since the moment I met him. It's just part of the job. It is what I signed up for and while some losses are harder than others, I absolutely love what I do. I will never regret being invited into this time with J. I will look back and feel grateful for having him in my life, and will feel sad when I think about never seeing him again. And such is life, right? Feeling all the feelings, taking it all in. Laughing the laughs and crying the tears, all with equal zest.

"If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special." ~Jim Valvano