The Silver Lining?
Having lived with Primary Progressive MS for 20+ years, I’ve experienced most of the symptoms that make this disease often horrifying. Somehow, I’ve managed to avoid any nerve or other pain often associated with this dis-ease, and found ways to deal with the unavoidable stresses that weighed on me.
I was fortunate to be introduced to Mindfulness-Based Stress Reduction (aka MBSR), which has been a Godsend. For the many times I fell on the floor and couldn’t move, it taught me that being still and focusing on my breath, can be a welcomed relief while you’re waiting for help to arrive.
Perhaps the most difficult part of this journey was sitting on the sidelines watching my wife take on the roles expected of a healthy dad in addition to the many hats she already wore with such talent. This in addition to being a mom, wife, working professional, cook, art teacher, master gardener, homemaker and taxi driver. I likened this to a nightmare of myself in my youth playing ice hockey, being stuck on the bench with no blades on my skates, and never being able to get back on the ice.
Being a disabled father of two girls was difficult, but it taught both girls compassion and kindness. I couldn’t have wished for daughters with kinder hearts. In addition to always being willing to help their dad, one daughter started her own Muckfest MS team, while the other got herself into Stanford University partly due to an essay contemplating the malfunctioning of her dad’s brain.
It is not my intention to belittle the struggles so many whose lives have been affected by this dis-ease go through. This can be a devastating disease. It most likely will slow you down, but sometimes you see more living life in the slow lane.
- James Joyce
Revised March 26, 2019.
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