I always believe there are choices in life. I am not talking about simple, easy choices (like what should I eat for dinner); I am talking about “life changing” choices. Often these choices are not always evident. Some have to be looked for (discovered) before they can be made. It is just important that you do not close the book on yourself because of your situation. You never know what could happen in the next few weeks, months or years.
Fortunately, and I do mean fortunately, Kennedy’s Disease is a slowly progressing disorder. It is often ten or twenty years between the time of onset and your first real life-changing issues. During that time, you will have the opportunity to make several choices. As the severity of the condition increases, even more choices will have to be made. Yet, you must continue to seek out alternatives and recognize the choices and opportunities that are available. You cannot just shut down.
For those of us living with Kennedy’s Disease, it might often appear that someone else is driving the bus and we are now just a passenger. Yet, the minute we do give up (stop fighting, stop exercising, or lose hope), we become a passenger.
For me, I am a man and I like driving. I also like knowing where I am going. I might not always ask for directions, but that does not mean I am lost.
I have a saying, "A bad attitude is the only handicap in life." What I mean by that is that you have to believe that there is a light at the end of the tunnel. You have to also believe that there is hope. You cannot give up on yourself because of your situation. When you do, you no longer have any choices and someone else will decide your future.
I also believe that those of us living with this condition need a good co-pilot. Your spouse, significant other, or soul mate is a critical element in your future success. She, or he, needs to be involved in the decision-making process because at some point you will be switching roles. A partnership in the truest sense is needed because you cannot do it all yourself.
The KDA has a saying, “Working together to find a cure … for our generation, and for our children and our grandchildren.” Many of us living with Kennedy’s Disease are driving the bus because we do not just want to be passengers, or bystanders. Finding a treatment or cure as well as helping others who are searching for answers keeps me motivated. It acts like a cup of hot, strong coffee when I am fatigued. It helps me realize that without hope, we have nothing to look forward to.
So, I will ask again, are you still the driver?