Several times a week I receive emails or comments from readers. Often, the person is reaching out, looking for help or support. Most of the time, it is the spouse or another loved one who makes contact on behalf of another. Last night I received a heartfelt request from a young woman whose husband was recently diagnosed with Kennedy's Disease. Below is a portion of my response to her. I post this hoping it might also help others.
The early years of Kennedy's Disease are the worst. Acceptance is difficult. You keep hoping and praying this is a mistake. You hide the changes that are going on in your life; often from even the ones you love the most. You constantly worry about losing the respect of others because you are no longer able or capable. Pride is a terrible adversary.
Worst of all, you believe you are letting down the ones you love. You are supposed to be the one who takes care of your spouse and your children. You visualize what you will be like in the future as the disease progresses and it crushes your hope. It becomes a constant battle of mind and emotions. And, all you do is make matters worse. You feel alone and isolated from the world you knew and loved.
Forty years of living with Kennedy's Disease affords me the opportunity to share with others that there is a life still worth living. Many of the fears I harbored in my thirties never came true in the way I envisioned them.
Living with Kennedy's Disease is a growth opportunity. You learn not to take things for granted and to be joyful and thankful for this wonderful life you have. You discover things about yourself that you never would have imagined prior to Kennedy's Disease. Since you read my blog, you know how important my gratitude journal is to me. It is my way of giving thanks for those special moments each day.
The most important learning early on is, YOU ARE NOT ALONE. Those of us living with Kennedy's Disease are a family. We care about each other and we share our learnings and experiences. I have learned so much from my KD brothers. And, during my darkest hours, they lifted me up and helped me move forward.
My most important learning was life doesn't end with Kennedy's Disease. It just progresses in a different direction.
Before I end, I need to remind you that a spouse also has a difficult path ahead. The spouse often is the recipient of the anger, frustration and moods of the husband. My wife is my greatest blessing. She is there when I need help. She steps aside when I need to do something for myself; even if it means I will fail. She learned that living with Kennedy's Disease is not just something the husband goes through.