Today, I posted lots of smoopy things about marriage/being in a partnership with my dear spouse.But I’d like to share something less cute, less “fun”. Being in a interabled relationship is difficult, it is hard. It is not always so overcoming with love. It’s not always free disability parking and in bed for days dream.
Almost 12 years ago, I sent a very basic, uninteresting “So, you like Anime?” message to some alright looking kid on OkCupid at 2am. I wasn’t invested in meeting anyone seriously, just passing time and silly quizzes on the site. Awaiting a life changing call to my transplant. Then life would really begin!
That night, two hours later, I got my call! A whirlwind of a time. two weeks later, bored in the hospital. I decided to check the site. I got a message back, I don’t recall what it said, but I thought it was funny and intriguing. I wanted to know more of what this “SuggestiveMonikr” dude about. All I knew so far is he can’t use a camera, had nice eyes and was goofy. I liked that. (I was right about that all.) He also looked sketchy and blonde in his picture. Was not super sold on this. We talked a bit, decided to move things to messanger. As he told me his handle, “onehotdiggitydog” I shuddered. But I guess we all had our silly, cringe AIM handles *coughXxXsxygnomegrrlXxXcough* (I did actually message him from a specific to meeting strangers online handle.)
Anyways. Our first two dates were awkward, miscommunication disasters, that somehow became jokes in our relationship. On our first, he didn’t quite understand I was limited in my mobility, so there was no “let’s meet halfway in a half mile walk his way, because we ended up comically at two different places, due to similar naming.
On our third date, I was in the hospital. I didn’t really want him to see me in that state, but I also didn’t think much of our developing relationship yet. He insisted and we watched a movie.
You could say, at some point, I got used to being dumped when someone realized that I was actually disabled, not a “little bit” disabled. That they just hated people who walk slowly. Of course, not me specifically. No, because I was funny. I was cute. So they could compartmentalize me until they couldn’t. Until we walked together and they tried to hide their annoyance of my slowness.
But this dude was a bit different. He had dealt with cancer in his life, had his own difficulties, he grew up with a mom with disabilities. So we had some basic understanding. Not fully, of course. We’d still struggle with him walking away a block a minute, only to realize once getting to our location, I’m not actually with him. We’d struggle with sometimes saying or doing the wrong thing in a moment. We had serious discussions about where we stood, our future. Especially as we fell in more love and wanted what a lot of couples want.
Not too long after we met, I got my apartment in public housing, that was accessible. It’s not easy to get, it was hard fought for. I had okay state/medicare insurance. Not fantastic, but it kept me alive. All good things, but it meant we could not live together, due to apartment rules. We had a limit of how much he could stay over with me. Talking about our future? I had to really consider my options, and we had to sit down and discuss what to do. Marriage, was a privilege, could we really do it? I’d lose my public housing, with no backups, I’d lose my insurance, rely on his. Would this be too much for us? Too much for him? We are both independent people, but this challenged that.
Well, we talked it, and like many things in life. And we did it. We had our dream wedding with those we love. We bought a home that fits our expanding needs as my disability demands. My partner has good insurance, that helped us figure more health things out. — Again, we are privileged and fortunate.
But otherwise, being a interabled couple is difficult. It is difficult in ways only those who live it can say. We’ve had to adjust our sails, many times. Some days, our days have to be a lot more chill, despite what we might want. My spouse helps me shower and use the bathroom when things are too painful. He carries puke baggies everywhere, in case I get sick. Catheters everywhere, even his laptop bag. He has to take work off, to appointments. Our life has been on hold for the last two years, because of my huge risk. (and his, he still takes Gleevec to keep his CML in check). I usually do the lists, organizing and planning.
Like most relationships, we have the same challenges, same arguments. He is terrible at taking out trash, I get distracted easily. But not everything is terrible and hard. Because “sickness and health” was at the beginning for us, we’ve grown a lot, both as people and a couple. We have no mystery, it died around the time we both got norovirus during our courtship. This is also the moment he also decided I was the one he wanted to be with forever. I guess that’s happens when shit happens.
Mostly though, I’m still smitten with him just as much as when we met. So is he. He’s still the person I love being next to in silence. (Yes, I do ocassionally shut up.) I still fangirl over his incredible writing and musical talents. His ability to learn, grow and do better. His indeed, cute eyes and giant lashes. His smile is my favorite. Especially when I can make it happen.
