For the week leading up to my surgery, I feel like I'm caught in a whirlwind. But Adam is the very picture of support -- the absolute perfect spouse. He does everything that needs to be done, so I won’t have to worry about it, and takes care of the girls, and makes sure that I’m eating extra healthfully, just as the doctor ordered. But even in the midst of all of this support, my worries and anxieties continue to eat away at me.
Every time I do something or go somewhere, I find myself looking at it from a totally different perspective, wondering what it would be like to do it if I couldn’t use my hands or my arms. I find myself imagining how much harder everything would be, and worrying about the much higher cost of the adaptive equipment I might need. What I need right now isn’t cheap by any means, and I’m thankful that I have good health insurance through my job that keeps my needs from bankrupting our family. But I wonder how much would be covered if I suddenly could no longer use my manual wheelchair and needed a power chair instead. Then I start to wonder how we’d pay for any other care I might require, because I’d hate for Adam to have to shoulder that burden. He didn’t sign up for that.
At the same time, I’m still trying to keep my head above water at work, and finding that task more and more difficult while simultaneously trying to make sure everything is set up for the unexpected time off I’m about to take. All I’ve told anyone is that I’m having surgery -- not why or what might happen. No one needs to know the details; I’d rather keep them to myself.
We end up doing the same with the girls, because we don't want to scare them with all of the confusing possibilities and what-ifs. We tell them I'm having surgery on my neck for some problems I've been having, and we leave it at that. Of course, they're worried and scared anyhow, much like we are, and I’m sure it’s because they can see I'm nervous, but I don't know how to tell my daughters that I might have cancer, so Adam and I decide to wait until we know more.
I think the prospect of losing so much of my independence is probably the most difficult part of all of this. The last thing I want to be is a burden on anyone. As it stands, I can still do everything for myself, even with a fucked-up hand that doesn't always cooperate. But all of that could very well change when I leave the operating room. How will I accept that? I know I'll have to, but I still wonder how I'll deal with it -- how I'll manage to convince myself that I'm not a burden, even though I know better than to even think about seeing myself that way.
How can I start over again when it comes to accepting myself and my abilities? I know exactly where this fear is coming from -- it’s my own internalized ableism, as fucked up as that sounds coming from someone who’s lived more than half of his life with a disability. I’m self aware enough to know that, and I’m trying to work my way through it so I can come to a place of acceptance, the same way I did all those years ago, but right now that feels impossible, because all I’ve got running through my head is worst-case scenarios. That’s not like me at all, and I know that, but I can’t stop.
I know Adam loves me -- I've never doubted that -- but I can't seem to push away my worry that if everything changes for me, it will change our relationship too. That's scary, and it makes me feel so alone, even as we lay together in the dark every night, his arms around me and his familiar voice telling me he loves me.
I'm scared and I'm lonely, despite being surrounded by support, all because of what I can't bring myself to ask. Because I'm afraid of what the answer will be.
The days tick by, and my surgery creeps closer, while my anxiety over what will happen afterward continues to build. My rational brain tells me I'm being ridiculous -- so much so that I’m too embarrassed to share my thoughts with anyone else, because I can’t believe I’m having them at all -- but I still can't push the doubts away. I'm thinking about friends whose relationships and marriages suffered after their injury -- hell, even my own college boyfriend, whom I’d been with for two years, ended up slowly fading out of the picture after I got hurt, simply because he couldn't handle it. Things like that happen all the time, and I can't help but wonder if, when push comes to shove, Adam and I will become yet another statistic.
I also have my job to worry about, because I’m our primary breadwinner. The unanswered questions still linger there, too. How much time will I have to take off from work? What will happen if I come out of this surgery without the use of my arms? I have insurance in place for situations like this, because it’s something that I always have to consider, since nothing is guaranteed and no one knows that better than I do, but what happens when that runs out? What happens when I go back to work? How will I keep up with everything, when I’ve barely been able to do that as it is? How will I continue to provide for my family?
The stress of my fears piles on top of the stress I’m already feeling at work, as I try to keep going. It’s hard, though. I try to focus on the big picture -- mostly on my family -- but that brings up all of my anxieties again. By the night before my surgery, I’ve nearly reached my breaking point, and it’s all I can do to just breathe. I can feel Adam’s fingers tracing a soothing pattern across my upper arm, and his body pressed against my back, and it makes me think about how much I’ll miss this if my already-limited sensation becomes even more so. My body is practically vibrating with nervousness, and I’m sure he feels it too. I’ve got a lot riding on whatever happens tomorrow. There’s so much at stake, and I’m overwhelmed.
I’m staring into the darkness, trying to calm myself down enough to sleep and failing miserably at it, when my biggest fear comes out. It’s barely a whisper, and one I’m not even sure Adam will hear -- maybe part of me hopes he won’t -- but I need to release it before it pushes me over the edge.
“Will you still love me?”
My voice is smaller than I’ve heard it in a long time, and I almost feel like this isn’t me -- this isn’t the person I’ve worked so hard over the past 25 years to become. This is the frightened recent college graduate, lying in a hospital bed, wondering what he’s going to make of his life. The young man whose mother had to spend two years pushing him, to get him to reclaim his life. The young man who doubted that anyone would want a romantic relationship with him ever again, because why would they want him when they could have somebody -- anybody -- else?
“What?” Adam whispers behind me. His fingers stop moving on my arm. I can hear the confusion in his voice. He pulls back a little in the bed, causing me to roll over onto my back because I’d been leaning on him.
I look at him, and I see the hurt there in his eyes. Hurt that I know I’m causing, but I can’t stop. My doubts won’t let me stop. “If everything changes tomorrow…” I take in a shaky breath. “If I can’t feed myself… If I can’t do anything for myself…” I bite my lip and close my eyes because I can’t look at him right now. “Will you still want to be with me?”
A few seconds pass that feel like an eternity, and the doubt within me fears it’s because I’m right, but when his voice breaks the silence, I learn how wrong I am.
“How could you think that?” he asks, and I hear a gentleness there that I probably don’t deserve right now. “I would never leave you. I love you. No matter what happens tomorrow, you’ll still be you. That won’t change. You’ll still be the man I married.”
I open my eyes, and I can see the tears glistening in his to match my own, along with a deep sadness that parallels my overwhelming sense of fear and doubt.
“If the very worst thing happens tomorrow, I will always be here with you.” He pauses and reaches out to wipe a tear from my cheek that I didn’t realize had fallen. “No matter what. I promised you that almost fifteen years ago, and I’m keeping that promise. Please don’t worry about us -- I’m not going anywhere. If things change, then we’ll change with them. But I’ll always be here.”
I close my eyes again as his words start to sink in, and I try my best to believe them. I have to believe them. In that moment, I feel the tears slip down my cheeks as my shaky breaths turn to quiet sobs, and my husband holds me, telling me it’s all going to be okay, although I know he’s just as scared as I am.
By morning, I’m still scared shitless, but I also feel a sense of peace -- an acceptance that wasn’t there before. We leave Esme and Sophia with Charlene, our upstairs neighbor who is always happy to help us with the girls any time we need it, and we take a cab to the hospital, where I’ll be spending the next couple of nights at least, and I try not to think about how long I might be there if something goes wrong.
We don’t say much, but we don’t need to. Adam holds my hand in the back seat of the cab and smiles at me any time I look to him for reassurance, and the love in his eyes is unmistakable. For once, I don’t feel so alone, and it makes me wish I’d let him in earlier. But I know I wasn’t ready -- honestly, I don’t think I was ready to face what was happening myself.
He holds my hand all the way up to the moment when they take me away from him, as the medication they’d given me to help me relax starts to take effect. I try to remember how his fingers felt when they were linked with mine, making a promise to myself that even if I never feel it again, I’ll also never forget it.
The bright light above my head is hurting my eyes, so I allow them to slip closed as I count backward from ten, just as they asked me to. Imagining Adam here with me, and knowing that in spirit, he is, as the darkness closes in and I put all of my faith into the doctors and nurses taking care of me and into the knowledge that no matter what happens, I won’t have to go through it alone.
What feels like a split second later, my eyes are fluttering open, and the first thing I see when my vision finally comes into focus is Adam’s face. He’s holding my hand, and I can feel it. He’s smiling, too. My brain is foggy, and I’m so tired that all I want is to go back to sleep again. My mouth is dry and my throat feels scratchy, and I open my mouth to speak, but no words come out.
Adam grabs a cup with a straw in it from the bedside table and holds it up to my lips, and the water helps soothe my irritated throat.
“They got it,” he says, saving me from having to try to speak. “It was benign. You’re going to be fine.”
In that moment, the relief I feel is almost as overwhelming as the fear I’ve spent the last seven days entrenched in. I feel a smile spread across my lips as I blink up at Adam, my eyelids heavy, and I can see he’s just as relieved as I am. He brings my hand to his lips and kisses it, whispering, “I love you. Let yourself sleep, it’s okay. Don’t fight it. I’ll be here when you wake up.”
I focus on the feeling of my hand in his as I allow my eyes to drift shut and let sleep -- peaceful, blissful sleep -- claim me once again.