What would you do if you were suddenly faced with a devastating health diagnosis? Unfortunately, I got to answer that question when I was diagnosed with ALS in 2011. If I were able to go back in time, there are a few things I did well and a few things I would do differently.
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!
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!
Since I was in denial, I took for granted all the things I could do:
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.
- Walk
- Talk
- Feed myself
- Brush my teeth
- Shower
- Dress Myself
- Drive
- 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.
When an illness like ALS strikes, financial concerns can be a major source of stress. Shortly after finding out that I would one day not be able to work, I assessed all my insurance. Since I was the only breadwinner, I wanted to be sure my family would be provided for. Fortunately, through my job, I had disability insurance, life insurance and a company that stood behind me. With those resources I was able to “retire” in peace when the time came.
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.
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.
When my ALS progressed, and I was no longer in denial, my wife and I planned a fabulous vacation. All five of us went on a cruise. I celebrated my birthday on the ship with my family and five thousand friends! While some may have thought taking this trip was not financially responsible, they were wrong; it is a memory we all cherish today. In my opinion life is all about making memories, memories that last.
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!
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!
ALS is a progressive disease in which the patient will require a lot of care. Typically, the family members or just the spouse are left responsible for caring for their loved one.
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.
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.
Finally, the most vital aspect to my well-being is to have a spiritual foundation. For me, it is my Christian faith. Without this, hope is lost. Without hope, you are really not living even though you may have a pulse! My walk with God is at times the only thing that keeps me going. I have read and memorized His words and they give me hope and a life. I hold on to the belief that I will be healed.
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.
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.
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