A couple days ago I came downstairs on my crutches to find the tires on my wheelchair were flat. I looked for a hand-pump and a pressure gauge to fix the problem but although one tire held the other seemed determined to stay flat.
“Oh well,” I thought, “I can just crutch around the house like husband says I should.” My husband, I should note, has been out in the field all week doing Army stuff and I am home alone, attached to a wound vac and oxygen, and having to learn to do things without help at my elbow when the mandatory babysitters aren’t around for a while.
I tried, I really did, to just tough it out until he gets back but when you have one leg and are on crutches, there is no carrying food to the stove to cook or dishes to the sink to wash. There is only takeout or standing in front of the fridge drinking from the jug and eating whatever doesn’t have to be cooked.
So what was I to do when I realized how little I could do from my sticks? I will tell you what I didn’t do. I didn’t call my babysitters. No. I found a bottle of the green goop for tires but it didn’t help. I spent hours re-pumping that damn tire and listening to find the source of the leak (it was the nozzle). I read a dozen pages online to see if I could possibly fix the nozzle myself. Because my tires are racing, sporty, snazzy-ass tires with tubes like bike tires (instead of the hard rubber ones most of us are familiar with) I felt certain that someone in the greater area at one bike shop or another would be able to help me. After spending hours calling every bike shop and medical supply story within a 50 mile radius, I finally found the one shop that carries tubes for wheelchairs, and it was only 15 minutes from my house.
When I got to this little shop, I found an older gentleman who was incredibly passionate about making bicycles for those with physical handicaps or medical conditions and taking care of wheelchairs for the rest of us. Working alongside him was an Army veteran who, very amusingly, regaled me with stories of being a combat engineer and never engineering a single thing, just destroying a lot of stuff. Before I knew it I was in the middle of a Marines vs Army heckling match between the two of these men, laughing until my sides hurt, as they shared their admiration for those who are injured or disabled and continue to serve in the military or who continue to fight to work and achieve, to do, to not sit down and give up on living.
As I was about to leave, the older man looked very intently at me said something I thought was so powerful that when I got to my car I had to write it down:
“I have to tell you something and I think it’s something you understand but that you need to hear today and to tell others.
“When people see people with physical handicaps or disabilities or illnesses that make it difficult to move or do things, most people look at what they see on the outside and they decide to step in to ‘help’ people by doing for them or by encouraging them to give up. They don’t understand that there are people out there that if they stop doing, they will die. I’m very serious about this. They assume that because something may be physically difficult that people are incapable of all things. It’s not about whether everyday tasks are easy, it’s about letting people do what they can and showing people that just because things are difficult doesn’t mean life itself is over.
“My wife has muscular dystrophy and was working here in town at ___, which is supposed to be all about being an advocate for people with disabilities who are in the workforce, but they fired her because she sometimes has to put her hand on the wall when walking. They justified firing her by saying they were doing it to help her take care of herself.
“When you do that, when you tell someone whose mind is sharp, who is capable in every way but one that they are not worthy of working and doing any longer, it can kill them. It kills their heart, it murders their soul, and it tells them that their value to the world could only be measured by their physical abilities.”
What this man couldn’t know is that at the end of April this year I was called to a meeting with my building principal where he handed me a letter dismissing me from my teaching position citing my illness as the source of a failure to meet the needs of my students. He told me that I should have quit long ago but that since I was incapable of making that decision for myself and for my best interest that he had to, as a good human being, step in and do what was right for me and for my own good.
The stress, devastation, and anger I felt over being summarily dismissed and told that because my illness is difficult for me I am not capable of teaching was enough to cause my many rare conditions to flare. There is no way of knowing for sure how much damage was done to my body because of that man and his determination that “taking care of myself” meant that I should not keep an active mind and body in the classroom, be example to my students of overcoming adversity daily, and focus on doing what I love and what I am brilliant at doing. The truth is that my story would have gone a different path, one with less physical pain and illness these last few months, had I not been told I was not able and my work was not worthy of my self-selected sacrifice. Stress causing all the flares may have been enough to start the catastrophic clotting that ended my foot.
That man at the bike shop nailed it when he told me what was on his heart. It was a reminder to me of my own story but also yet another reminder that others cannot benefit from a story they never hear or an experience they never share.
There is no way to know for sure how much of my recent experiences were tainted by that ablistic decision to fire me for my own good, though I don’t know if I would want to know if I could. What I do know is that telling this story, as with all the stories I have and will share, somehow will bring forth something positive from that which could have destroyed me had I let it… had I quit!