In the right column of this page is the following explanation as to how I see “living with Kennedy’s Disease.”
"Life is a succession of lessons that must be lived to be understood." I have used the analogy that learning to live with Kennedy's Disease is like trying to cross a stream without getting wet. The only way is by using the stepping-stones provided (my chosen life's path). Each step is a "life experience" and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.
Now that I have difficulty safely walking, the analogy just doesn’t seem to fit my situation any longer. Recently I changed the photo at the top to a stack of stones. I felt the balancing act of creating a new world, a new way of living, was more relevant to my current situation. If I replace one stone with another and it doesn’t fit well, it could come crashing down.
The ability to live with Kennedy’s Disease, or any other progressive neuromuscular condition, requires constant adaption and acceptance as the disease progresses. For example, instead of requiring a cane or walker, you now require a scooter or wheelchair. Instead of getting by, it becomes a matter of constant adjustments to your daily life and routines. At some point, it is no longer about substituting or leveraging; it is about knowing when to ask for help, and how to let go of certain treasured capabilities.
This morning I remembered playing the game of Jenga with family and friends. For those who haven’t played it, Jenga is a bunch of wooden blogs that are stacked about 12” tall at the beginning of the game. Players take turns and remove (pull out) a block. You don’t want to remove a block that causes the entire stack to crash.
Living with a progressive condition is like playing Jenga – only you are the stack of blocks. When a block (capability) is removed, you have to adjust (adapt) to maintain your balance. At some point, you can’t make adjustments and you have to cling to the other blocks in hopes the entire stack (your self-worth and beliefs) is still strong enough to hold together. The minute you give up those essential elements of life, you risk crashing. As the condition progresses, more often, the other blocks are your family and friends. They step in (understand, adjust and adapt) to keep you standing.
Treasure those other blocks that help support you when another block (capability) is weakened or removed.