“It’s called… village, or something like that. I know they have one near you. Here, I’ll find it.” My tireless, life-changing-injury mentor picked up her smartphone and started searching. “Here it is; there’s one right in the community center.” She tapped the phone and brought it up to her good ear, waiting for someone on the other end to pick up. “Hello? Is this one of the Adventist villages? I have a friend who is in need of some services, you know, like independent living services, rides to the store and things like that?”
Tears were welling up in my eyes. I blinked them back; I wasn’t about to make a scene in the local coffee shop. My mentor, a woman who suffered not one, but two brain tumors in her forties and lost use of much of the right side of her body, had been talking to me about admission. As in, mine. Of my condition. (Her word, not mine. I preferred acceptance. Apparently, that wasn’t enough.)
“Like when you found out you were depressed and needed medication,” she prompted. “How did you feel then?”
“I was grateful. Because I knew that whatever was wrong with me could be fixed.”
“Aha!” she crowed. “And that’s what you want from this.”
“No.” I knew better than that. I know this can’t be fixed. “I just want…”
“You just want to be able to manage it.”
“So what if I told you that you were never going to be able to manage it?”
“I…” I broke eye contact. “…you’re not the first—I’ve heard that from other… trustworthy sources,” I admitted. Like Momma Ape.
“But it’s my anger. I don’t know what to do with it. I don’t…I don’t want to be taking this out on the people around me.”
But I wasn’t angry just then; I was tending more towards beaten down. I’d been in excruciating pain all week, and on top of that, I wasn’t getting enough sleep, so by that day, Friday, I had slipped into morose like the ramp had been greased. I felt broken, or rather, heartbroken, like I’d woken up from a dream filled with sunshine to a world that was desaturated and under-lit. I felt like a child who was having her few remaining dreams dismantled piece by piece.
A living representation of one of those dreams was sitting three tables down from us; a woman breastfeeding an infant who couldn’t have been more than a few weeks old. They still looked like one being. I could see the comfort she drew from its presence in the blissful expression on her face. I will never know that comfort. I will never know what it feels like to hold an infant of my own to my chest.
It had been a long week. My pain shot up on Tuesday, and despite two trigger point injections Wednesday afternoon, had only barely gone down. Sitting for any length of time was excruciating. My appointment with the disabled student support services counselor was what set it off; I sat in her office for over an hour Tuesday morning, listening to a spiel designed for someone half my age. I tried to move her along at one point, explaining that I was an adult student, and that I knew how to take care of my own financial aid and was not going to miss my registration window. But she, only perhaps a few years more than half my age, would not be distracted from her script. All seventy-five minutes of it.
Still, my application for disabled student support services was accepted; I am now qualified for a number of amenities, including exams in a facility with an adjustable height table so I can take them standing up, permission to make up quizzes and assignments missed due to absences cause by my condition; campus para-transit; early registration to make sure I could adjust my schedule to my needs, etc. I was torn between the guilt over not having done this months ago, and the sadness over the fact that I needed to do it at all.
Later that week, I went to the DMV and obtained a permanent handicapped hang-tag for my car. “Now, when you need to renew this, you don’t need another form from your physician,” the attendant said, handing me the placard. “You can just renew it online.” I took it in my hand. The temporary one had been a sort of reinforced cardboard, and after three months, it was starting to look pretty rough. But the permanent one was stiff plastic. It has to be, I suppose; it won’t expire until 2018. Sitting back in my car and staring at it, I suddenly hated it. I stuffed it in my glove box. I left it there when I went to pick up my prescriptions.
And all this was my idea, to get a permanent placard, seeing as how I would need one for the foreseeable future, and to apply for disabled student support services. So why was I so upset about it? Why was I chafing at arranging rides to places where I’d need help retrieving heavy items, like kitty litter? Why were my eyes filling with tears as my mentor took down the phone number and website of the local Adventist Church’s independent living resource office?
“I hate this, you know,” I said as she put down the phone.
“Uh huh. I know. You haven’t admitted it yet. You keep trying to control it.”
I thought that I had admitted it. I thought that I had given up control. But I hadn’t; not really. I was still trying to carve out a little piece of autonomy for myself, like my misguided quest to cut out my pain medication, an experiment that has officially failed. It’s good that I took it down a step from the maximum, because it’s opened up some room for me to be able to take the full dose if I need to, as happened this week. But there is no way I am going to be able to go off of it completely. The pain I thought had lessened gleefully reasserted itself once I started classes a couple of weeks ago.
Sitting for an hour each day in a hard, cramped desk has exposed the serrated edges of my physical condition, and I’d been running up against them all week, leaving me chastened and sore. I don’t want to live the rest of my life like this. I really, really don’t. I’m back in school and some of my former professors are throwing these amazing, highly sought-after graduate opportunities at me, opportunities that other students would probably give important appendages for, and I don’t know what to do. This is what I used to want, back when I was slaving away, being such a high-performing student that it almost killed me. Do I still want it? Yes, but…
…but I don’t know if I will be physically able to handle it. My mentor loves to tell me about people trying things and failing, or as she would say, falling on their asses. “But try anyway,” she insists. Because she wants me to figure out what my limits are.
I will try it anyway, but not to figure out my limits. My reasons are that I won’t need to decide whether or not to accept these opportunities until March or April, when the formal notifications go out, and since I don’t know what my physical condition will be then, there’s no point in trying to guess what I will or won’t be able to handle.
But she knows better. And on some level, so do I. I do know what my physical condition will be. Or rather, I don’t know exactly what the “condition” will be, but I do know it will involve pain, in some form or another, for the rest of my life. I know I won’t be able to sit in a chair for more than an hour. I know that this pain will sap my energy and keep me from being able to burn the candle at both ends, as graduate students are invariably expected to do. I know I won’t be able to take anything close to a full load of work, class work, lab work, whatever. I know that my body will continue to betray me if I try to do more than I should; I know the only way to keep my pain manageable is to barely do anything at all.
And maybe that’s what has me so sad. I’d set my sights on another few years of these boundaries and limitations, as I gradually worked my way back up to the point where I could get back to maybe 75% capability. But now, I realize that’s just one more dream that needs to be let go. There is no coming back from this. Whatever I did to myself, which I still struggle to describe, there is no undoing it. I really am partially disabled.
Forever. Not temporarily; not wait-and-see. I may have good weeks here and there where I can function at a higher level, but I can’t count on them. My condition is chronic; it will never go away. Nothing and no-one is going to come riding in to rescue me from it. Not now, not six months from now, not ever.
My ex, the one I split with several months before this happened, the one who has been helping me with rides and errands over these last few months, surprised me last week with an offer to do just that: rescue me, take care of me, live with me. And I turned him down. Because I don’t love him any more, and it wouldn’t be fair to strap him to me – to this – just because it would make things easier for me.
I need to learn how to do this by myself. I can’t have friends running errands for me and driving me to doctor’s appointments forever. If there are support services, then I need to learn what they are and how to use them. I need to stop acting like this is temporary. I thought I had, but all I had done was move the goal posts farther away, from six months to a few years.
But the game is over. I’m the only one left standing on the field. They’re waiting for me to admit it’s over so they can take the goal posts down and turn the field into something else. I don’t belong there any more. I belong somewhere else. I’m just not ready to admit it, not yet.
I suppose I will be sad and angry until I do. Even though everything in my life is telling me that it’s over, I just can’t seem to blow out the last little candle. I want to keep one for that child inside me. I don’t want her to have to learn that none of her fantasies will ever be real. I still want them to be real. I still want to go back to that sunshine-filled dream. I don’t like this dim, colorless place and I don’t want to belong here.
If only the wanting were enough. But it’s not. That’s what makes me so angry about woo; it’s based on the fallacy that if you want something, if you believe something with enough force and enough focus, that you can make it true. But that’s just not how life works. And at some point, I will have to go and break it to that little girl. And then she will never be the same.
And neither will I.
It is hard, really, really hard what you are going through. And your friend who made the call that you are not ready to make is a really good friend. She is showing you a way to be independent … no longer dependent on friends and family. How we resist asking for help, especially from a place that specializes in offering help, even though we are clearly in dire need. I was lucky to have Dad and you and friends to do the “heavy lifting” and driving during the worst years. And I didn’t have the added stress of having to find work to support myself. You are a brave woman. And you are going to be okay. I promise.