March 31, 2021
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Will ≠ Way

March 31, 2021

I grew up with the saying “if there’s a will, there’s a way.” Most people have probably heard this phrase and, perhaps based on where  you are in life, you either believe it or not. I grew up believing that it was true, if I wanted something badly enough it was possible, if there was something wrong it could be fixed as long as you had enough will power. It was not me as an individual that I believed so indiscriminately in, but my family. My parents had always supported me in materializing my ideas and goals. The goals weren’t anything crazy, mostly I got stressed about finishing school projects or being double booked for different events, and whenever I was panicking because I thought there was no way I could finish the project in time to my perfectionist standards my mom and dad were there with a cup of tea, an editing eye, and a helping hand, whenever I was stressed because there were two places I wanted to be at once, they were there to help me divide my time wisely and get me where I needed to be. Despite what my anxious brain told me, things worked out. If I willed a problem solved it would be. When we’d go on vacation, if anything went wrong, my parents always seemed to busily whisper about it until somehow it had been sorted out, and if we ever got lost on a car ride I would just fall asleep in the back seat and when I woke up we were usually at our destination. I think all of that parental backup gave me the idea that with the help of others, the people who deeply love you, problems could be smoothed over, you could always make it to your desired destination, and that things would be worked out in the end.

It sounds like a very privileged way to think, like a very privileged upbringing, and it was. I know how lucky I was to be able to grow up with this attitude, and the gratitude I have for my parents, who are two of the best people I know, has been known to bring me to tears.

All that said, when I first started talking to Z, I was presented with a lot of “I can’ts.” It seemed like whenever we spoke about his life or our relationship he was always pointing out the things he couldn’t do. If we were musing about romantic fantasies I would start planning some romantic gesture and he would have to stop me to say, “Well, actually I couldn’t do that.” And there I was, on the other side of the phone thinking, but you can. If you really want to you can always figure out a way. If I was closer to Z, I thought, together we could get around all of these obstacles.

Now I am closer to Z, too close some might say. Similar to the incredible support system that I grew up with, Z has a tightknit, supportive network of people around him. They’ve made it possible for us to live together. In fact, their support is the main reason it’s possible for me to be here. Quite like if I had told my parents I really needed them to accept somebody I love into their lives, Z’s network has cleared a space for me and made it a cozy, homey one. But even with all of that support, Z’s life is still filled with “I can’ts.” Me being here and seeing those “I can’ts” up close hasn’t allowed me to fix them, if anything it’s just shown me how little can be done to change them.

It’s something I couldn’t really wrap my head around when it came to disability, that there are some things that would be made too difficult or too nearly impossible to even be worth trying to figure out. After having lived with Z for over three months, I can see how even little things that feel like they should be so easy to fix, are so difficult: The f**cking bi-pap mask that only works every other night, pants that become uncomfortable after an hour or two, even physical intimacy can be quite challenging. I get so frustrated, not being able to fix these things that should be so easily fixed. I think Z is used to the frustration.

I discussed this blog topic with Z the other night, the idea of “If there’s a will, there’s a way” and how he’s changed my belief in that phrase. We started discussing all of the stuff he would have loved to do in life, but hadn’t felt like he could. He discussed it through tears. He asked me to express and try to really get across how deeply he wanted to do things, things like going away to college or having a 9 to 5, but that he couldn’t. Understandably I think, he said he feels like he’s missing out. I hardly ever hear Z ask it, but when we get into topics like this, he will ask “why me?” and I won’t know what to say. There’s nothing I can do to make missing out on things not sting. There’s no way for me to fix it. I sat there and listened and said, “it sucks,” and we both agreed that it does suck.

As for me, I love Z more every day, but yes, I think about things we won’t be able to do together. As a theatre person, I always had this dream of living in NYC, where the majority of my friends are and I’d be just a short train ride from my parents, but NYC is not accessible. My family home itself is not accessible. I love to travel, but a plane ride seems impossible. I’ve always wanted to have kids. As a child, when people asked me what I wanted to be when I grew up I would always tell them, “a mom.” But if we were to have kids would we be able to take them to all the fun, enriching places that made me the person I am today (it’s way too early to discuss kids maybe, but then again when is a good time to discuss it)? Would we be able to do a carefree day at the Renaissance Faire, or the Bronx Zoo (where I took my first steps, fun fact), or a trip to Disney World, or take them to Washington DC as a couple. Would we be able to give them that same sense of ability and safety in the world that my parents gave me? I have all the will in the world for these things, but in the end, there might not be a way. How much am I willing to compromise my vision of what I want for the future?

When Z and I were done crying over how much disability sucks the other night, he looked at me and told me that he never thought he’d find a relationship, that that used to feel impossible to him, but here he was with me.

When I was young, and still learning that I could make things possible, I was obsessed with Rogers and Hammerstein’s “Cinderella.” I watched it at least once a day, and one of my favorite songs from it was called “Impossible.” There’s a line in it that goes “…the world is full of zanies and fools, who don’t believe in sensible rules, and won’t believe what sensible people say, and because these daft and dewy-eyed dopes keep building up impossible hopes, impossible things are happening every day.” So, for now I’m choosing to remain a dewy-eyed dope and remind myself that the impossible does not always stay that way and that if your will is strong enough it just might pave the way.