The Dreaded "What-If's"
I’m a 44-year-old man living with spinal muscular atrophy type 3. Looking back now, I was pretty independent as a kid all the way through my late 20’s.
Anger and resentment about feeling different
Growing up as a young child through my early 20’s I really didn’t appreciate how lucky I was. I held on to a lot of anger and resentment that I was “different.” I would imagine other disabled people feel the same.
As I matured, I came to realize that I am really not that different. We are all different in our own unique ways. The spinal muscular atrophy doesn’t define me.
It is a part of who I am. It limits what I can do physically. It doesn’t limit me mentally. Everyone has some things they deal with. Obviously mine being physical, it’s easy to notice.
What if I didn't have SMA?
I find myself wondering ”what if“ from time to time. What if I wasn’t born with SMA? What if my symptoms weren’t as severe as they are now? What if the SMA didn’t progress to the point where I required assistance with my daily living?
In the last 14 years, this disease has slowly chipped away at my independence. I’ve lost the ability to get up out of a chair by myself. Then I lost my ability to walk without holding onto someone or something.
Now I’m totally reliant on my wheelchair or scooter to get around. Then I lost my ability to dress myself and lastly I lost the ability to drive.
Starting to look at the positives
Full disclosure, I’m not a mental health professional. I have learned that it can be unhealthy to linger in these “what if’s.”
Disability or no disability, I would imagine we all do this sort of thing. I want to encourage you though to start looking at some positives in your life.
When living with a disability it can be hard to find positives. They are there! We might need to look a little harder.
Training my mind to think positively
I’ve worked hard throughout my life to look at the glass half full. It’s not an easy task. Like anything in our lives we have to put in the work.
Our brain is our most powerful muscle. Like a professional athlete trains their body, I’ve trained my mind.
There are days where I get down and slip into the “what if” mentality. It’s now easier after years of training to snap out of that mentality.
Stop worrying about the "what if's"
The point I’m trying to make is that worrying about “what if’s” can be a waste of time and energy. Living with a physical disability such as SMA requires extra energy as is.
I’ve tried to live looking at the positives in my life. I have been lucky to have had a strong support system my entire life. I realize that support systems are a big key to my daily living.
If you are not as lucky as I have been regarding your support systems, you need to get busy and get things in place in order for you to succeed. I believe we need to take care of our mental well-being.
I want to encourage you to start now so that you don’t ask yourself “what-if” in the future.
Have you met our advocate team yet?