This week, I am going to talk about a boy.
Husband’s heard the story, but for many years I debated whether I would ever talk about it to anyone else, much less the entire Internet. And honestly, the boy doesn’t even know what he did. He has no idea how he shaped my self-perception. Just a few small words, and I was irrevocably changed.
Not anymore, though.
I once knew this boy… whom we shall call Boy. He was very special to me at one point in my life. During the first year of college he was my long-distance rock, the person I would call every night. At that time, however, I was still coming to terms with my considerable (first) spinal injury. I’d broken my back at age 17; the doctors didn’t even find one of the fractures until the winter of the following year, which also happened to be my freshman year of college. So not only was I trying to be a freshman, but I was also trying to be a normal human being.
I was in enormous amounts of pain; I’d constantly have to bag on plans with friends in order to go back to the dorm and crawl into bed, flopping onto the special mattress the school had provided (it was a real bed, super firm, as opposed to the pseudo-military cots they gave to the rest of the students). I’d call the Boy, crying about how much it hurt. It felt like every breath just drew pain into my body instead of air.
A couple months of this was all he could handle. Just before finals that first fall, I felt that familiar thrill of seeing his phone number flash on my duct-taped flip phone.
I was surprised to hear his mother’s voice on the other end of the line.
It took her no time at all to get to the point. “You have to stop talking about your back. He can’t handle it. You’re making him depressed.”
Every detail of that moment stands out like a tilt-shifted photograph. I can see it all like I’m peering into a miniature diorama: the sheer blue curtains I’d put up over the two windows that looked out over the courtyard. The dingy microwave and mini-fridge the university had provided us. The shag carpet beneath my bare feet. How I sat down on the floor very quickly. How I was breathing more and more pain into my body as I tried to keep from crying.
After that, the memories are murky. We talked about small things, normal things. Later that evening, the Boy called. We talked about small things, normal things. And a few days later, he damned me.
“Life has been so great since we stopped talking about your back!”
It was a careless statement. Maybe another time I could’ve shrugged it off, but that sentence became my gospel. He had no idea what those words would do to me. From then on, I equated talking about my pain with driving people away. I was damaged goods — that was the term I always used in therapy sessions. I couldn’t be accepted as I was.
I met Husband fairly soon after ending things with the Boy, but there was a flurry of dating in between. Each time I went on a first date, gussied up and looking like regular person, I’d have to get that disclaimer out so they knew what they were getting into.
“Just so you know, I have chronic pain. I broke my back last year, so sometimes I have to go home unexpectedly, you know, I’ll be hurting a lot–” And on and on.
They’d always say the same thing: “I’d never guess that, looking at you.”
Of course. That’s why it’s called an invisible disability.
Just the idea that I had to give a disclaimer goes to the fundamental heart of me. I had to give a reason for being. I had to let people know what I was so they could decide if I was worth their time. And even when I met Husband, after I’d gushed to my mother about how great he was, she sent me a letter: “Don’t tell him too much about your back yet!” That hopeful balloon in my chest was punctured, and I shrank back into myself.
But Husband was different. He became the spine that has betrayed me so many times. He gives me the strength to interact with life.
I think about the Boy a lot. I don’t like to; it feels traitorous at this point in my life. Every time I go home to visit my parents, the ghost of him is there and I wonder if he’ll pop out from around a corner when I least expect it. I’ve debated this internally for the longest time — why do I still think of him almost a decade later? As I teased apart those thoughts, however, I realized I’d go back to that specific memory. I would go back to all the times I’d felt like less instead of feeling like more. All those times that I didn’t feel good enough.
According to that philosophy, I have to hide what I am to make other people happy. That’s the lesson I learned. My state of being — the way I live every day, my inescapable present — makes them uncomfortable. And because it makes them uncomfortable, I have to hide it. Tone it down. Keep it to myself.
Obviously I don’t like the idea of complaining; whining about a chronic problem just brings everyone into the gutter. But if making out on a soft couch is painful because there’s no support behind me, I’m not going to just stay there and plow through it. I’m going to move to a hard-backed chair or something. There are adjustments I have to make in order to function.
I am not damaged goods. I am a whole person worthy of love and support — and I do not need to hide any part of me. I know that Husband gets depressed about my condition, and there are times when the problems seem insurmountable. (That’s a whole other kettle of fish: caregiver stress.) But he stands by me, and my family stands by me, and I can be myself with them. If I have to go lie down during Thanksgiving dinner, they understand. Obviously we would all prefer it if I were able to enjoy all the activities, but we have come to an understanding. If I can’t ride on a roller coaster during vacation, they’re okay with it. They don’t ask me to hide anything. They would never want me to suffer alone.
Funny story that doesn’t start off quite so funny: Sometimes the pain makes me vomit. I am not always able to handle both food in my system and the pain, so the latter forces the former out. My family is used to seeing me make a run for the bathroom or slip quietly away, only to return red-eyed and pale. This past Easter, I went to my parents’ house for dinner and then disappeared to the bathroom right after — for normal reasons. When I emerged, my brother pulled me aside and said in a low voice, “Are you okay? Did you… you know?”
I gave him a confused look as the silence continued on. He was so concerned. Then I said:
I don’t think either of us had laughed so hard in years.
Anyway. It sounds trite, but everyone has baggage. Husband has signed up for mine, and I have signed up for his. My family is the strongest support system I know, and they all have their own problems. And the reason I still think of the Boy is because I have this constant doubt, this feeling that I am an imposition on people because of what I am. What if he was right? What if I do need to hide those parts of me? Is it unfair of me to talk about my pain? Is life truly better when I don’t talk about it? Of course it is. Nobody wants to think about unpleasant things. But hiding them just gives them power, and I will not let my disability have any more power over me.
It hurts, of course, but I forgive the Boy for saying those things to me. He didn’t know what he was doing. Even though it hurt so badly, he didn’t know. He couldn’t have known how that would affect me. He only saw that I was happier, that my dark problems weren’t clouding our conversations. He was young. So was I. We didn’t know what was irrevocable.
It is not unfair of me to talk about my pain. It is part of me. I am a whole person who happens to have physical issues. Sometimes those physical issues are very prevalent. Sometimes they consume me. But at the heart of it all is me, and I will not be silenced.
This week’s winner: WHOLE PERSON!
Just remember: None of this is your fault.
Don’t ever apologize for your pain.