When I was young, but just old enough to realize not everyone could do everything I could, I came to some shallow conclusions about life.
I loved music and singing, but my great-aunt could not hear. She could not hear me sing and she did not hear me yell, but she was very aware when I was doing these things. But she never sang with us. I could not imagine, as a child, not singing. I did not really understand what was meant when I was told she was ‘deaf’ or could not hear.
I think I thought it was like a game we used to play, when we would pretend not to hear someone, no matter how loud they were. We would try not to giggle and, most importantly, you could not do anything the other players told you or the group to do. I don’t know if it was normal for me to relate to it that way at my age. But I do remember it was so concerning to me that she could not sing. So, no matter what, I always wanted to be able to sing.
As my life progressed, I met many people who could not do things I could do, and in many cases I could not imagine not being able to do those things.
This might sound awful, but it is honest. I even felt, in some cases, I would rather die than have certain limitations. Today, I know two things about which I was wrong – just so, so wrong.
The first: I was wrong to think if I ever came to the place where I could not walk or crawl through caves or chase storms that I would no longer enjoy life. It simply has not turned out to be true.
When my pain got so severe I could not longer work on-site in an office, I really did believe my life was over. I thought I would lose my job and my purpose. I would lose my income, I could no longer play as I once did, I would lose my social life. My life, everything I enjoyed about it, seemed suddenly lost.
Worse, everyone around me felt the same way. There was sympathy piled high, so high I couldn’t see over it or around it or through it. I was covered in it and couldn’t find my way out. I was depressed and angry and scared.
At some point, I reached out to a woman I had worked for previously with some employment concerns. I shared my situation as one ‘professional’ to another. When I was done, she shared with me that she, herself, had not gone through this directly, but she and her son went through it together. She shared her frustrations, her concerns for his future and how the world would see and treat him.
She spoke of legal battles, the need to educate people and the people who just can’t seem to be educated at all. (Was that me in my younger years?)
She shared calls she made; groups she’d joined. She shared how she learned about her son’s condition, then learned to advocate for him, and then taught him how to advocate for himself.
He sorted things out in school, making friends despite his first initial experiences of teasing. Despite some initial emotional melt-downs, he was now getting through life pretty-much the same as most other kids his age. His care was different, he had special needs to keep him healthy, but otherwise, he was a kid, doing kid stuff with other kids.
She said it had taken some time and much effort, a few attorneys, lots of doctors and one or two support groups, for him, her and the family to sort it out. Today they were ‘living’ again, with all the bickering and happiness any regular loving family shares day-to-day.
We chatted for some time, and then she said to me, “I know you can do this, I know you have what it takes.”
I was in tears. She had given me some hope.
Now that I am several years into my body’s breakdown, I can say she was so right. It wasn’t easy. There are people I wish I never had to meet and many, but there were many people I’m glad I didn’t miss having in my life.
My perceptions about being unable to find happiness with less functionality, constant pain and disciplines so critical I cannot function physically, mentally or emotionally without them were wrong.
I’m pretty happy. So much so, folks who are facing their limitations for the first time either can’t believe the limitations I have and find me a bit annoyingly upbeat. It’s true, I’m happier than most folks who have no diagnosed limitations.
(There are many studies about happiness, and I know, today, much of our level of happiness, once we work through the baggage it is buried under, is thought to be predetermined. I think I’m just inclined to be fairly happy in general — so there is nothing wrong if you never hit the ‘annoyingly’ happy place…be who you are! Now back to where we left off…)
Even so, it’s important for me to remember my feelings of desperation and fear, of loss of ability and that horrible ‘perceived’ loss of purpose. None of that has turned out to be true, but it takes us to the second I hope I’ve got right today.
We live in a society which teaches us if we are not ‘whole’ and ‘capable’ physically and mentally we are somehow ‘less worthy’ and universally ‘less capable’ and definitely ‘less desirable’ than those who are fully functional.
Why? Commercials are easy targets — and there’s no question most of their underlying messages are unhealthy emotionally, physically and mentally. But more importantly, they are simply untrue.
There are also theories about one’s appeal being tied to biological factors about beauty. This theory suggests our definition of ‘beauty’ is tied to imagery about fertility and our drive to survive.
When considering my situation, I suppose this same biological theory would apply, with a biological tendency to favor able-bodied persons, healthy persons, people without pain, over others to ensure the survival of one’s gene pool.
However, the BBC website posted an article in June, 2015, by David Robson, which suggests these biological ties do not exist. The more scientists search, the clearer it is ‘beauty’ changes over time. (See “The Myth of Universal Beauty“)
This is great news! It means perceptions do and can change. If it’s true for beauty, it can be true for persons like me who wear braces, or people in wheelchairs, or those who can’t speak…it’s a long list, but for anyone with a limitation of any kind.
It allows me to see my limitations as not things that take a way from my experience as much as they ‘change’ my experience and how I interact with life. When I see it this way, I can begin to adapt; learn how to get through life with it, enjoy life with it, figure out how to achieve goals with it, and, maybe most important, I can value myself in the same way as anyone else, whether or not they have similar or different limitations. I am free of societies prejudices (whatever their cause) and can start living again.
This is not how I started my journey, but given perceptions can change, I do feel a certain charge to make that happen. I don’t want the next generation to have to go through a ‘grieving’ process. I hear so many speak out this ‘grieving’ the loss of their functionality.
I think it is used too broadly today. There is no question some of us will come to a point where we can no longer ‘adapt’ to our limitations, where we will begin to lose our own autonomy…where we will be at the mercy of others and will hopefully be cared for by persons with compassion who are not under too great a strain to treat us as a human being rather than a task on their list.
That place is very different from where I am today…I can improvise, adapt and overcome as any good Marine would. So why must I spend time grieving now? What if we, who have come to realize this, work to change the perception of what people like ourselves can do?
If we did, the next generation may enjoy the confidence that losing some or all physical ability does not mean they won’t have a contribution to make to society. Instead of dwelling on the loss, perhaps they can immediately move to adapting to the change; how they will learn to do what they once did.
There is a better chance the next generation can know severe chronic pain doesn’t mean you can never laugh again. That whatever limitations we may come to experience in our lives, they don’t mean our fun and enjoyment ends.
It increases the odds that persons like myself can more easily maintain existing relationships as opposed to finding other venues so they can build new ones from scratch. It gives me hope that as a group it is less likely we relegate our lives to electronic ‘ghettos’ of others like ourselves.
It suggests employers can stop seeing people with chronic pain and illness or disiability as a drain on the company and a liability. That as limitations and challenges arise, companies will value employees for the contributions they have made, the experience they bring and see the value in ensuring they continue to function over investing time and effort into a new unknown commodity.
It suggests as our bodies change over time, we need not experience such emotional anguish, questioning our value and investing time in the rebuilding of our self-esteem.
And if I ask myself, ‘What can I do to make this happen sooner?’ – it’s to keep reminding folks I’m okay, I’m happy, I’m functioning and contributing – my life is not bad. I do this even if I’m having a bad day, just as I likely would have before pain, illness and disability crept in on me.
My message to those who pity me today is clear, “Don’t underestimate my life – don’t write me off, don’t assume my life is more anguish than serenity!” I haven’t, so don’t presume…please don’t presume.
That is honest too, and feels right, so, so right!