I am a disabled person. I cannot sit in a chair or stand or walk for any significant length of time without significant pain. This is not how I was all my life. It is how I am now.
Disability came to me suddenly. As I recall it, it came to me in about a week. I went from being fairly mobile to being flat on my back, unable to walk or sit without excruciating pain.
So I did not live with disability all my life. I did have physical challenges throughout my life, but I was always able to push through them–and that became my mantra of life.
I really thought, in those first days, that the medical system would fix me. I thought this so strongly, that even after dozens of doctors had told me there was no “fix”, I kept searching for one.
There is a very simple and reasonable explanation for this. I grew up in a society that taught me, without question, one of the scariest outcomes of life was to be disabled. I met many people, and even at one point agreed, it might be better to be dead than disabled.
As horrible as this sounds, I honestly believe it is what many people feel. This creates a huge issue for the newly disabled. Not only must they deal with their own belief system (which society taught them and will fail them emotionally, mentally and spiritually), but they must also deal with the society who has no motivation to change their beliefs.
When I came to understand there was no “fix”, is really when my trauma began. That is when all of the beliefs society taught me about disability came front and center.
In this same time-frame, I was battling for an accommodation with my employer. People at work were sharing with me how nobody had ever successfully returned to work as a disabled person. They were less than hopeful for my success.
This added to my trauma, as I piled financial insecurity on top of all the other beliefs I had about losing sovereignty over my being, independence, support, purpose, enjoyment, laughter…everything.
Today, I speak on average with a person a week who can’t figure out how to live as a newly disabled person. They talk about suicide and death, but that’s not what they want. What they want is a way to live, some hope. What they want is to know is that they have a chance of having all the things I thought I would lose when I became disabled.
Sadly, some people enter disability and never meet anyone who tells them they don’t have to sacrifice everything they hold dear just because they become disabled. When I was so afraid of losing so much, I was on the verge of going crazy. I was angry, depressed, scared, couldn’t sleep, anxious–it wasn’t good.
My brain had no choice but to apply the societal beliefs I had learned about disabled people to myself. They are horrible and untrue and we need to stop spreading them.
What is worse, because as a society most everyone believes these things, there was no one around me to tell me they weren’t true. There was no one I knew, no one close to me to say, “Hey kid, you’re going to be okay. It’s kind of a bumpy road at first, but it smooths out. If you have real trouble, give me a call and I’ll show you the ropes.”
I was well on my way to deciding my life was over, that there would never be any more happiness in it, when I spoke to an old friend I used to work for. Please don’t think this meant I was suicidal, I wasn’t really. Suicide just isn’t an option for me. I stink at it, and with my luck I wouldn’t die, but could make things far worse.
Regardless, I’m glad, ever so glad that I couldn’t kill myself. If I had, I would’ve done so in vain. I would’ve killed myself over the lie that life is not worth living if you are disabled. That anyone who lives life as a disabled person is inherently inspiring. That by simply getting up each morning I am defying the odds of how difficult my life is and setting an example for all able-bodied people of how little they have to really complain about.
All of this stuff is just untrue. There are actually able-bodied people who are up against far bigger things than I am. I just couldn’t see it at the time.
The friend I spoke to had battled society’s view of disabled people with her son. She didn’t see him as a write off and she had to fight to convince others of the same. She shared with me some organization she had worked with, some of the battles she had won, and assured me I could figure this out.
So in my case, an able-bodied person believed I had everything I needed to have a purposeful, contributing life. And on those words, I began a journey in a new direction.
I was still super scared. I could not see how this would all turn out. I couldn’t fathom it could turn out okay.
I had already started going to various support groups. The best word to describe many of them would be commiserating groups. They were groups where disabled people got together online or via phone and talked about how hard their lives were, how impossible certain things were and how it was probably never going to get much better. They would all talk about how grateful they were to know each other so that at least they knew they weren’t alone. There was never anybody on those calls who shared how they had kind of sorted it out, how they kind of figured out how to get through life and be happy at least once in a while.
Finally I found a group amongst the wreckage where people had some hope. They didn’t tell me it was easy, they didn’t tell me society would change for me, but they assured me that I could get my head around being disabled, that I could learn to navigate the landscape, and that I could find some joy and peace and serenity in this new life.
If you really want to know about this group, you can email me. They’re not the only game in town though, there are many others, I know today, who share the same message of hope. But my journey involved traipsing through quite a few to find one.
What I can also say is this: medical professionals, therapists and counselors, faculty, support groups, religious institutions and even other disabled people may not be helpful as you learn to deal with disability. You need these people, but you need to find the ones who believe that you are still capable. Not all of them do. I had to replace quite a few doctors for this reason, and I’m glad I did. I didn’t turn away from the medical community, I just had to find members of that community who really believed I could live a worthwhile life despite its specific challenges.
Many other things had to change too as I moved out of denial and into the reality of my situation. I had only two choices: 1) to live the rest of my life depressed and in fear never knowing what additional difficulty was to come, or 2) acknowledge my situation and find people to help me adjust my mental, emotional and spiritual thinking around it–so my actions could follow. The first was inconceivable to me and provided great motivation to do the second.
It wasn’t easy. It required a lot of faith. Before, as a reader, you quickly interpret what I mean by faith, let me simplify it for you. Faith is what we do when we enter the unknown. We trust, no matter what, we will come out the other side.
For some of us, this might involve a power greater than ourselves–but for others it draws on a power from within, and may be for many it’s a little of both. Regardless of how we step into the unknown, those first steps are steps of faith.
What I know today is there was no way for me to know the direction my life would take, and where I would end up today. Some of the things I’ve experienced, some of the things I have learned were beyond anything I could imagine.
I am graced to live in an era of technology, which allows me to share these words with you and meet people from all around the world. I can’t fathom what it was like to live without technology. What I know, though, is that people did and that they faced the same societal issues that I face today.
Today I believe that as a disabled person I’m fine. Not every day is easy, there’s a whole lot more bureaucracy than I’ve ever experienced at any point in my life, there’s quite a bit of stigma, but it is what it is–and it is a lot better now that I know I am a competent, whole and complete person. A change in my physical abilities did not alter my spirit, did not alter who I am at my core, and did not steal my life.
Disability has taking me places I’d have never journeyed otherwise. Not so much physically, I suppose, although I have sure been through quite a bit of physical (medical) things that I probably would’ve never done had I not become disabled (giggles), but more importantly it is taking me to new places mentally, emotionally and spiritually.
Today, my greatest challenge is with society. The same society that taught me all I knew about disability before I ever experienced it. The same society that didn’t understand disability at all. The society that is afraid of disability, and what it means to be disabled.
I believe if I had taken far fewer lessons from our society the transition from able-bodied to less than able-bodied would have been far easier. But I can’t change society in a day. None of us can.
Even so, we cannot sit back either. I believe we are charged to do promote change. There are so many struggling with disability today not because of how challenging it is, but because they have yet to meet those of us who have scaled it. Those of us who have found a way to love ourselves with our disability instead of resenting our disability for what we are no longer.
We have found a way to see ourselves as whole, inclusive of our disability. For some of us, we can’t even imagine being completely able-bodied anymore. This is our life, and it’s a fine life.
I know this is such an important message because it took just one friend to share it with me to change my life’s course. I feel as if, every time we meet someone who’s a bit down on how their life is “less” today than it was prior to any physical limitation, we are charged to share with them their life, like ours, is all it needs to be if they can just let go of their old life.
We simply cannot put down ind new roots, find a new basis for living, if we are still attached to something that does not exist anymore. It is like grieving that never ends. We refuse to move on, and as a result we cannot experience all that life has to offer us.
I really have never met anyone who has said to me, “When I die, I want everyone to mourn me for an eternity, to remember me and to never let go.” Why should it be any different with our bodies? Why should we mourn for the loss of a limb, the loss of a function, or in my case, the onset of constant pain.
I’m not suggesting we live in denial. I am always well aware that I am in pain. It is constant and significant at all times in my life. But, today, it is simply another part of my life. To get here, I had to change the way I thought about the pain I experience.
I had to let my old life go. It hasn’t disappeared, I carry it with me all the time in my memories–which I look back on fondly and think how grateful I was to have had those experiences. I think this is healthy, because I don’t resent my memories. I am glad I had those experiences, and I know it is unlikely I will have them again. I am free to look forward to the experiences I will have in the rest of my life, whatever they may be.
If all of this sounds easy, it wasn’t for me. Even today, I’m not always in this place. I can still get overwhelmed, a bit down, definitely angry, confused and very unsure about my future.
But, I had such feelings sometimes when I was fully able bodied too. So ti’s not really different. I try to remember that I’m not feeling these things just because I’m disabled, I’m feeling them because mentally, emotionally and spiritually I am finding my current circumstance unacceptable.
From a spiritual perspective, I somehow believe wherever I am there is something for me to be doing of some significance or value. I believe resting has value. I believe doing something fun has value. And I believe I have a contribution to make to others. All of these things are important.
So if I ever feel that I’m not in a place of value, right now, this moment–it’s not because that’s true, it’s just I can’t see it. And I know there are those who have been through very traumatizing experiences–please know you are not alone in this I have been through some too.
I wish I hadn’t been through them sometimes, but I have and there is nothing I can do to change that. But I do know today there are things I can do to help others who have experienced similar things. I’m not saying any sort of Eminent Power placed me in those traumatic experiences, I’m just saying the fact I live through them has given me something to offer those who may have to face them as well.
So don’t make this deeper than it is, and don’t feel it implies that bad things happen for good reasons. That’s way too philosophical for me. Bad things happen. I wish they didn’t, but they do.
As a society, we are sick. Our view of the disabled is not helpful to them or ourselves as the time to face disability arrives. The same is true with so many perspectives we have as a society. We honor our fears more than we honor each other.
This goes for all our experiences. What a great world it would be if we could set aside our fears just long enough to remember that whatever is bringing them to mind, especially if it is a particular person’s circumstance, they are far more important as a person than any of our fears.
We live in a world full of resources and in a society full of such competent people, it never ceases to amaze me how often we let fear, our personal insecurities, get in the way of how much we could do together without them.
Isn’t that what it’s all about? Working as hard as we can to see each other as whole and competent? Remembering that we all have bad days, when we simply don’t appear are best, we don’t behave our best and we certainly can seem to do our best. That is what we have in common–we’re human.
Fear is so hard to overcome. But I think, probably the greatest lesson this journey into disability has taught me, is that if I’m afraid there’s more for me to do. There is another mountain for me to scale, to rise above so I can be more free than I was before. And, without a doubt, I can’t scale them alone. There have been so many marvelous people in my life who helped me over each and every one if I could just open myself to the idea of climbing. (Those who know me know how stubborn I can be, so every mountain I climb is a miracle.)
So, our charge is to help others climb these mountains too – we do this by sharing our stories with them, offering hope that they too can scale mountains and see the world from new heights. Join me.