The Difference Between Living and Existing After My PPMS Diagnosis
Columnist Stephen De Marzo grieves the abilities he's lost due to PPMS
It’s been a year and a half since I was diagnosed with primary progressive multiple sclerosis (PPMS). I still have use of my limbs and am able to walk, albeit shakily, without a walker. My eyesight has not been affected, I drive, and am able to carry on a conversation with some clumsiness.
Some may say I am lucky. I say it depends on your definition of luck. Overall, my friends tell me it doesn’t seem that bad, but I frequently ask myself if I am really living or just existing.
When I run into friends, family, or acquaintances I haven’t seen in a while, they tell me I look great. But when I stumble through my words during a conversation and then laboriously walk away, an odd silence follows. Encounters usually end with, “Let me know if there is anything I can do for you.” This just reinforces my feeling of simply existing.
As long as all the environmental conditions around me are just right, all is good. My wife jokingly named me Goldilocks because temperature and stress control all must align for me to feel comfortable and emotionally balanced. I liked the name and adopted it with a twist for my column: “Goldilochs” includes my need for perfect conditions (“Goldi-”) and the Loch Ness monster that is my PPMS (“-lochs”).
I have better luck controlling my environment than I do my emotions, which are often raw and uncontrollable. This causes me to endure moments of deep sadness and depression.
I have been reflecting on why I get sad and depressed and believe it has to do with where my mind is at certain moments in time. Immediately after my diagnosis, I was angry and upset. I wondered, why me? I longed for the days when I didn’t have to focus on my physical limitations. I didn’t want to go anywhere or do anything. “I can’t do it,” I told myself every waking moment. My wife would respond by affirming, “Yes, you can!”
Dealing with the memories of what I had been able to do previously and what I’ve lost keeps me up at night. I don’t think enough about what is left or what I can still do. I am a glass-half-empty kind of guy. I often wonder if I would have been better off if I was disabled earlier in life and didn’t know about the abilities I’d lost.
Previously, I had many titles and wore many hats, but now I must lean on everyone. I can’t support myself physically or mentally. I want to live, not just exist.
My definition of living aligns with a comment billionaire Elon Musk once made: “There have to be reasons that you get up in the morning and you want to live. Why do you want to live? What’s the point? What inspires you? What do you love about the future?” Currently, my goals are small: Get up, get dressed, drive to the farm, water the crops, come home, and rest. I’ve found little joy in achieving these goals.
I realize that there are moments when you are living and moments when you are existing. The challenge is balancing the two to make truly living a greater factor in my daily life.
I think part of just existing happens when I’ve had a day with too much activity, which forces me to rest for hours on end. This happens to me frequently, because I need to be part of the equation in life and work, yet must be mindful of not doing too much.
Living is practicing my faith and being with my wonderful church community. Living is also being with family and friends who are strong and supportive.
Last weekend, I had an opportunity to experience living during a family gathering at an outdoor restaurant with live music, free of the restraints of my MS. The weather was just right and the band was fantastic. For me, music has the ability to remove me from my physical being and send me to my spiritual being. Although my physical struggle returned when the night was over and I had to hobble back to the car, I had a slight pep in my step — I had lived as I had before my diagnosis.
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