Several years ago, I attended a major cancer conference for work in San Diego. I met a wonderful Cleveland Clinic doctor who later became my friend. Coincidentally, he and I would run into each other at lunch or walking across the street on the 170-acre Cleveland Clinic main campus. At one such random meet up, he informed me that he was headed to Egypt on business and, I in turn told him, that I was bound for Morocco for a yoga retreat. We agreed to meet up for coffee upon our return and swap travel stories.
I find it fascinating when a day solidifies in your mind, and conversations you had continue to resurface later in life. With coffee in hand, we sat at a tiny table in front of Starbucks at Cleveland Clinic. I can’t remember why I told him I had MS but it must have been germane to the conversation. I spoke about my struggles. I was deteriorating — decreased mobility, crippling fatigue, and more physical and visual representation of disability. He asked me, “how often do you think about your disease?” I didn’t even pause before answering, “all day, every day.”
At the time, my MS felt pervasive even though it continued to get worse and fast. I was expending a tremendous amount of energy presenting “normal” to the world and hiding my disease and its manifestations. If I was at work, how would my energy be? Would my coworkers or leadership see me differently? How much effort did I have to hide outward examples of my illness? If I was making plans with friends, where were we going and how far would the car be from the entrance? How much walking would our outing entail? Where are the bathrooms? What tasks can I clump together to save energy? What am I incapable of doing that I shouldn’t even try to participate in because it’s more difficult for others?
MS played a role in every decision in my life from small to big. And as I thought about MS 39,397 times a day, I felt the added burden of chronic illness that people don’t see.
I didn’t know how to separate living my life from my diagnosis and illness. They seemed inextricably linked.
Discussions on Death
As I explained this to my friend, I started to get teary eyed. I have a “no crying at work” policy that I try to adhere to and absolutely failed on this day. I was demonstrably emotional. He listened and asked me an unexpected question.
He said, “Are you ok with death? If you died tomorrow how would you feel?”
Without hesitation, I answered “no” rather emphatically. I would not be ok with dying tomorrow. I was angry. I didn’t deserve this illness. I didn’t deserve this suffering. I have so much more to do with my life. My friend took my answer in and nodded. I asked him his own question and he replied, “Yes. I would be fine and feel I’ve already accomplished so much. I am not afraid of death.”
In the dialogue that ensued, he spoke about the waste of time wishing something you have no control over different. He spoke about the increased suffering I was causing myself living in this negative space. He reminded me that no one knows the time we have on earth, so perhaps I should enjoy it.
I’ve thought about this conversation often over the last four years. I was shocked then and in awe now, of the comfort he has with his life. He seemed at peace as he answered me. He was unwavering. Color me surprised that in facing a life-changing procedure like HSCT, my answer to his question changed from an empathic “no” to a calm “yes.”
Several appointments into the HSCT process, I was told by doctors, nurses, social work and more that I could die from this process. It’s rare, but it’s possible. They are doing their due diligence, ensuring I understand what is happening and the risk factors associated with treatment. This is serious stuff. I was encouraged to update and share my medical power of attorney and my living will.
Sky Diving & Transplant
I’ve gone sky diving, bungee jumping and zip lining in Costa Rica. I’ve hiked the Inca Trail in Peru and traversed Angel’s Landing in Zion National Park scaling chains to the summit. All of these things, though less explicitly stated, bore a risk of death. However dare devil-y I’ve been in the past, this HSCT process kicked me into gear and forced me to think long and hard about my risk tolerance.
The Hard Stuff Checklist
- I chatted with my sister about funeral arrangements, wishes and where I would like my ashes scattered.
- I checked and updated designated beneficiaries on all financial accounts and policies.
- I went through who in my life should get what of my possessions.
- I thought about life saving measures and where I draw the line for just keeping me alive.
- I thought about all the different body parts that can be donated to help others and if I would donate my body to science.
The forms are easy to find with a simple google search, but the pondering of last wishes takes times and effort. The burden is not in the amount of stuff owned, but rather in the who and why certain things matter to me or might matter to someone else.
I set out in this process thinking it would be emotionally taxing and strenuous. What I received instead was an opportunity to reflect on my amazing life thus far, the path that brought me here today and the friends and family who could benefit from my estate in the future. With that reflection, it occurred to me that I was at peace with death. I don’t want to die (I hope that’s obvious) but if it happened I have lived a remarkable life.
My friend left Cleveland Clinic for another opportunity before the pandemic. I wonder if he was being flippant or profound in asking me that question. I wonder if he knows the impact he’s had on my thoughts around death over the years.
Lastly, I took the time to plan my estate and outline my medical wishes because I did not want to burden my family. Write out your wishes, get them witnessed or notarized, and share them with your care teams.
Don’t leave your thoughts, words, feelings unstated. Don’t add to your family’s burden by making them guess. The self reflection might surprise you.