The word ‘living’ has an abundance of meanings, but when I write “living with Kennedy’s Disease” I mean “the pursuit of a certain lifestyle.” In other words, you are still enjoying life as best you can considering your current situation. Often when a man is first diagnosed with Kennedy’s Disease he goes through the denial and the ‘why me’ phases. If he cannot come to grips with the reality of his situation, he might shut down ... partially give up. In my opinion, this is one of the worst things that can happen to him.
This blog is named, ‘Living with Kennedy’s Disease’ for a reason. It is important to find a level of acceptance that allows you to continue to enjoy the life you have been given. Many times I have mentioned the blessing and curse of a slowly progressive disorder. The curse is that when you finally accept your current condition, the disease progresses enough that you have to accept your latest and newest loss of strength and capabilities. The blessing is that the condition ‘slowly’ progresses giving you ample time to adjust for the changes that are occurring.
Living with Kennedy’s Disease means finding that balance within yourself that allows you to still accept your condition, but also to live your life to the fullest. You do that by not giving up or giving in to the mental and emotional aspects of the disease. You find a way ‘to live’ by understanding that life continues to go on whether you choose to participate or not.
Gratitude Journal
Comments like, “what’s the use” or “it doesn’t matter anyway” are not used, no matter how frustrated you are at the moment. To help you ‘live’ a more fulfilling life, I recommend starting a ‘gratitude journal’. It can be as simple as writing something on a piece of paper at bedtime or using a tablet or binder for your thoughts. The tools are not important. It is the process that matters. Whenever you are feeling a little down or frustrated or outright angry, jot down the things in your life you are thankful for. It could be your wife and children (if you are married) as well as your family and friends. List their names and also write down something about them that you are thankful for. It could be your pets, your work, your understanding boss, the house you own, where you live, etc. Just write it down!
The key is to draw your thoughts away from the negative and replace them with positive ones. This shouldn’t be a hokey (fake) list and comments; it should come from the heart.
I know that most of my readers will never give this gratitude journal a try, but for those that do, they might find that it makes a subtle yet positive difference in their life.
Hi Bruce
ReplyDeleteThanks for writing “Living With. . .” two of your recent posts triggered fond memories of my Grandpa Joe. I know that he too had KD; but he did not know his diagnosis was ALS but he just lived longer than expected. As a young child I just knew he enjoyed life; giving me an example for how to live long before I knew about KD and the challenges of living with it. I often stayed with my maternal grandparents and participated in his daily routine. He had stamp and coin collections to explore. As a former Navy sailor he could explain the stars and constellations. I have a vivid memory of watching him sitting in his wheelchair at his desk working on a large paint-by-number landscape. He had to use both hands to combat his hand tremors. I still have two of his paintings. I have always been inspired by how he enjoyed life in spite of his disability. Know those memories help me be determined to emulate his example. Thank you for bringing it into focus as we start a new year living with KD.
David