Living with Kennedy’s Disease is difficult enough, but when a man’s ego is involved the ‘living with’ process becomes that much worse.
I have written several articles about ‘acceptance’ and my ‘welcome’ statement on the right of this article ends with the comment that ‘acceptance is what I am working on today’. As I look back over the years where I fought what was happening to my body, I truly wonder how different my life would have been if I would have swallowed my pride and just accepted Kennedy’s Disease for what it is.
Was I trying to be a martyr?
I had to endure self-inflicted suffering (mental and emotional) as well as pain to prove I could overcome Kennedy’s Disease. At times I was almost like a martyr. I would not share these feelings even with my family (including my wife) and closest friends. I thought that ‘sucking it up’ and not expressing my concerns, declining capabilities and fears was some kind of badge of honor.
Boy was I wrong! I experienced many falls and several injuries, fortunately most were minor, because I would not allow myself to accept that life is going to be different. I also made excuses for not participating in certain events. If I would have been honest with myself, as well as with others, about my physical limitations things would have been different … and mostly better.
This blog is almost like my penitence for all those years I would not admit, even though others knew, something was wrong. In “The Nine Stages – Learning to Live with Kennedy’s Disease” I outlined the process a person must go through before being set free from the burden of facing living with Kennedy’s Disease alone.
The eighth stage: Acceptance
Acceptance does not mean happiness or bring comfort. Instead, you are now able to accept and deal with the reality of the situation. Life can once again begin to move forward. You find that you can easily admit to yourself and others that you have the disease and that there is no cure, but also saying things like, “It’s okay … I can live with this.”
In my 2009 article called “Denial” I wrote:
I will twist the meaning of the adage, "Pride cometh before the fall," to reflect how this period of denial was a dangerous time for me. When I found out that I had Kennedy's Disease, the last thing on my mind was sharing that information with others, especially my boss and co-workers. My pride (ego, insecurity, or whatever you want to call it) would not let me admit to anyone that I had the disease. I was afraid that by admitting it, the relationships with my boss and peers might change and it could possibly hamper my career. During this period, I experienced several falls while working including one that resulted in a broken bone. Every one of these falls could have been avoided if I had been honest with myself and with my boss and co-workers.
Your do not have to be alone
So, if you are struggling with accepting Kennedy’s Disease, I am asking that you sit down with you wife, significant other or best friend and just talk it out.
- Let her or him know how you feel …
- Express your concerns and fears …
- Explain how you want to be seen and treated …
- Discuss how, with their help, you can move past this period in your life and start living again.
As always, let me know if I can help