When I was diagnosed, the first thing I did was denied having the disease. I kept working and carrying on as if I was not sick. I pretended if I acted normal I would be normal. Rather than spending time researching things I may be able to do to prolong my state of health, I simply ignored the sickness and rejected learning anything about it.
Rather than taking advantage of my days of good health, I plodded along assuming things would indefinitely continue in this manner. As a result, I sacrificed memory-making moments that I could have created with my family and friends. Needless to say, that was a MISTAKE!
- Feed myself
- Brush my teeth
- Dress Myself
- Strum my guitar
- Scratch myself
- Turn over in bed
- Hug my wife and children
- Wipe the tears from my eyes
Today, my arms and legs sit useless unable to engage in conjunction with the desire in my brain to make any of these things happen. I should have cherished every moment and realized that today is the best day of my life. Each day onward will only rob me of something I was once able to do.
Once I would not be working, my family would need private health insurance. This is a very complicated issue and needed to be addressed before I left my job.
How I behave with my disease affects the people around me. My actions and how I carry myself influence people that I don’t even know. If you are living with a challenging condition, know that people are watching you. Your positive attitude as you face trials, will serve as a powerful example. Attitude and actions matter; people are watching!
In the early stages of my disease, Laura was the only one taking care of me. It was evident that as I progressed the amount of care would increase exponentially. Someone had told Laura to get help before she really needed it.
Fortunately, she heeded that advice. Looking back, it was an important step that allowed me to realize that it was okay to be dependent on someone other than my wife. It showed my wife that, with training, others could take good care of me so she could have a break. I am glad we began seeking help early on in my disease. If we had not, having someone step in today when I am totally incapacitated would probably be overwhelming for all of us.
My wife and I recognized that after working for almost thirty years, I would need something to do once I was no longer able to work. Laura set up a blog for me and I began to write. She set up dates for people to visit me so I can have some of that social interaction that I once got from my job. Having visitors and writing my blog gave me reasons to get out of bed each day. It is important to have things to look forward to and something to give one a sense of accomplishment.
I hope I have given you some thoughts to ponder whatever state of health you are in. Know this, no matter where you are today, this is just one chapter in your story. Your current circumstances do not define you; but how you deal with them will.