Living a Full Life

If there is one piece of advice that I always give concerning living with Kennedy’s Disease, it is to not let the disease control your life.  It is important to find new ways to ‘live life to the fullest’.

Terry Waite’s guest post last week brought to mind an interesting article in Quest Magazine. Living Outside the Bubble by Debbie Button tells the story of a mother who has a child with SMA-1. The story is told from the perspective of a caregiver. While watching her son grow up, she tried to do everything to protect him and it was difficult to watch him become more assertive and self-reliant.

In the article, Ms. Button commented, “A door is never permanently locked; it just may require a new key.” This comment, along with Terry Waite’s skydiving experience, made me want to write this post.

Often I hear from men who have recently been diagnosed with Kennedy’s Disease who believe that their life has changed forever. They look upon the diagnoses almost like a death sentence. As Terry commented in his article, he needed to break free of his fears and get beyond “I can’t.”

In the past I have written about maintaining a “quality of life” that you, as well as your family, are comfortable with.  Many people with health issues refuse to give up and give in. Yes, they might not be able to physically perform certain things like they did a few years earlier, but there are ways around almost everything these days.  Finding a ‘new key’ is the trick.

For example, a blind man climbed Mt. Everest with the help of the rest of his team. Or, triathletes who compete in the IronMan without the use of their legs.  A KDA associate still sails every chance he can. Another associate in his 60s still plays golf every Saturday. A professor with Kennedy’s Disease took his class to Vietnam last year. The students had to carry him up and down steps and he had to rent a moped instead of a bicycle, but he still went everywhere and saw everything.

Yes, they have help and use some aids, but they are still living the life they enjoy.

I still walk my dog four times a day and visit friends and neighbors with the help of my golf cart. I look for handicap accessible trails today where I can still use my wheelchair. Not that many years ago I was still hiking Mount Rainer. I fell down so many times while hiking that I lost count. Yet, I was back up there hiking again the next weekend. Every hike was special for my wife and I and we still talk about many of them today.  But, these hikes provided an even greater meaning for me.  I was still up there with my wife doing what we loved to do. 

Ms. Button ends her article with, “When navigating life with a serious health situation, every day presents new and unique circumstances. But deciding to experience an abundant life will allow for the fewest regrets in the end. Fear is a natural response – but don’t let it keep you from moving forward.”
 

Yes, we have to adjust and we have to compensate, but that doesn’t mean we have to give in or give up.

• What is your passion?
• What do you love to do?
• What is keeping you from doing it today?

 Now, find a way (a new key) so you can still enjoy it.