... is change.
Learning to live with Kennedy’s Disease requires your acceptance of constant change. Progression, a misnomer in my book, means that what you could accomplish in the past might not be able to be done today. It is one of the hardest pills to swallow in my opinion. Yes, it happens gradually, thank God, but it still happens. And, you had better be mentally and emotionally prepared for it when it occurs.
When I was in my thirties and early forties, this change was far less noticeable. It was something you could tell little white lies about (e.g., bad knees) instead of facing the truth that something ugly was happening (the ‘progression’ word). At some point, however, I could no longer fool myself. It wasn’t much later I realized I could no longer fool my friends and associates. I had to accept that something was happening that was irreversible.
I have mentioned many times that one of the blessings of Kennedy’s Disease is the progression. It is slow (approximately 2-3% a year). When your onset was just a few years ago, the 2-3% doesn’t sound like much at all. However, when you have been dealing with the disease for thirty plus years, the 2-3% is accumulative and quite evident in most everything you do.
Again, as difficult it is for me to say, the slow progression is really a blessing. Can any of us imagine living with this progression if it was 10 or 20% a year? Wow Nelly! Now that would be difficult to deal with.
So, change is major part of our acceptance process. We must live with it and somehow find a way to deal with it. Because the one thing we know for certain is there will be more change. And, with this change will come greater wisdom and a better understanding of our purpose in this world.