The Future?
Every year 20,000 parents find out their child has Duchenne muscular dystrophy. It was a known possibility for some families, and others – like my family – are caught completely unaware.
Unfortunately, muscular dystrophy families do not have a monopoly on the grief of a child with a disability. In the disability community, far more than 20,000 families a year receive a diagnosis and live with questions and heartaches that will last a lifetime.
For families and individuals with a disability, such as DMD, questions about the future are ever-present. Two big ones are: Will I die early? What will my quality of life be like?
Will I die early?
When you or your loved one is diagnosed with a condition that will someday end your life, the future can seem hard to plan. It would be easy to say my life will be short, so why prepare for a future that will never come?
My answer is that not a single person on this earth knows how long we have, whether we have a life expectancy of 15 years or 105. No one really knows how long they’ll be here not the parents, not the person with the disability, and definitely not the doctors.
By a certain age, you can look back and see those who have passed away before you because of accidents, cancer, and other unforeseen events. They prepared for a future that seemed so sure, but it never came to fruition. You realize that none of us can predict the future.
A big key to a happy life is not the guarantee of a long life, but what we do with the time we have, so we are prepared for whatever the future may hold.
Meeting the Future
Even if you can’t predict the future, you must believe in and live for your future, whatever it may be.
For example, when I was 18 years old, I had no plan for what I wanted to do or become after it became clear Navy Seal and Secret Agent wouldn’t work out. But I believed I would have a future, and I prepared for it every day. I never dreamed I would someday claim the title Dr. Ryan Russell and be a published author, but here we are.
We don’t choose to have a disability, but we can choose to work towards positive things to build our future. You can choose to fight and work now for your best possible future.
The worst possible thing that could ever happen to someone is not being diagnosed with a life-shortening disease but never really living at all.
By Dr. Ryan J. Russell
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Prepare for 90 at 20
There are very few things that humans cannot control, overcome, or at least influence. We can build dams on rivers, create lakes, control, and put out forest fires. We have even found ways of overcoming gravity. However, there is one thing we have not learned to control, and that is time. Even if we could somehow slow the planet’s rotation and add more days to the calendar, it would not change the time that we have to live.
Deny and fight it all you want, but there is no overcoming it, and we all know it’s there and will likely happen before we are ready for it. Preparing for old age before it’s too late strikes home for me. The longer you live, the more people you know who pass away, then before you know it, your parents have become old, and you realize it’s inevitable for you too. Many programs and books help you prepare financially and medically, which is excellent. Unfortunately, there’s not much help concerning the social and the hard decisions that accompany old age or weakness caused by age or disability.
My Experience
I was diagnosed with Duchenne muscular dystrophy when I was four, at which time the doctor informed my parents I might live to be 18. At the time of writing this article, I am four months away from 39. There was not much worry about me outliving my parents. They were in their 40s when I was born, so you can see that they are now what you would call elderly. I’ve been very fortunate to be abnormally healthy. When it began to look like I would outlive my parents, they created a trust to ensure I have their home and meager financial assets on their passing. I am on long-term care, which does not allow me to have more than $2000 in assets. So there are definite steps we had to take.
It sounds like it’s all taken care of, doesn’t it? When my parents created this trust with an attorney, there was no thought given to their eventual failing health. But too late, we recognized we had not prepared for their failing health. We were getting ready to take steps to be ready for the process of aging. In December 2020, both fell, each ending up in a nursing home for over two months. It was glaringly obvious we were not set up for this sudden development. I was taking steps to be in a position to support them and myself but needed another year. Almost four months later, we’re still struggling.
How I Will Help
After going through these difficulties, I realized that I don’t want anyone else to go through this. Having the experience of being unprepared for it to happen to my parents made me realize that I need to start working with people in this area. Not only have I seen it happen to the people I love most, but I have lived it. As a man with Duchenne muscular dystrophy, I understand what it is to lose physical abilities gradually. You may ask if there’s any way to prepare or if there’s any way you can make a plan for old age when you’re 40? The answer is yes, and I will help you at whatever age you are right now.
What I do as a life coach is regardless of what age you are, I help you make a plan to move into old age on your terms well prepared. If you drive, realize someday that old person who should not be driving because they almost ran into you will be you someday unless you plan now. If you start planning at 20 years old, or whatever age you are now, you will be able to quit driving on your terms; anyone who has had to make their parents stop driving those how heart-wrenching it can be. On the fourth Friday of each month at 130 Eastern, I will host a free webinar telling about my experiences and give a few ideas of what you can do to prepare. Should you want to work on it more or do more one-on-one with me as a life coach, you can buy a chosen package. Getting old or becoming feeble is inevitable; It will happen to each of us. But I will guide you in a positive direction to age with integrity and on your terms.
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Leap of Faith
Faith is an often misunderstood concept. When people hear the word faith, they tend to think of religions where an individual believes in a supreme being of some sort. However, people do themselves a great disservice by thinking that faith is only religious. Faith in one’s self is perhaps the most significant asset any individual can attain in life. As children, we were full of faith; a child has faith that when an adult puts their hands out and says, come over here,” they can walk to them.
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