Ellie
Living at theDeaf house has been going great. It’s almost like being back in the Brandview dorms. However, there’s no dining hall or maintenance crew, so we’ve had to figure out meals, take the trash out, and cut the grass regularly. After a few spats that luckily didn’t fully explode into arguments, Shay got a calendar for the fridge so we all have assigned chores and don’t run into any more issues.
I’m working on homework and eating some chips at the kitchen table Wednesday night when the doorbell light flashes. Izzy and Alex are on the couch in the living room, and we all stare each other down, waiting to see who will get up to answer it. Since I’m closest, I shrug and get up from the wobbly dining set, taking my dish to the sink before opening the front door.
There’s no one there.
But there’s a small brown package with my name written on it in Sharpie. There’s no postage or address. Clearly, someone just dropped it off.
“This is weird.” I hold up the box. “It’s some random package for me.”
My roommates jump up to inspect it as well. It’s in decent condition and not super heavy or anything like that.
Izzy hesitates. “Is that safe to open?”
“Do you recognize the handwriting?” Alex asks.
Hmm. Actually, looking closely at it, I know exactly who this package is from. I roll my eyes and tear open the box. Inside is the little lamp I used to keep by my bed at my parents’ place, as well as a hastily scribbled note that saysI thought you might be missing this, Mom.
“That’s nice, I guess.” Izzy shrugs.
“She could’ve waited to say hi, though.” I shake my head. “Right?”
Alex laughs. “How fast she must have driven off. Sorry, that’s not funny.”
My mom racing down the driveway back to her car is an image I won’t get out of my mind soon. I know I left things on a bad note, but now that I’m not under their roof anymore, I can be the bigger person. If she’d stuck around, I could’ve shown her the place.
We could work toward having some sort of healthy—or at least not toxic—relationship. If I stayed at that house, we would’ve continued to fight to the point of no return. Maybe I need to tell them that more clearly.
Jackson seems to be doing better lately. He’s not up for taking an EasyRide yet, so I always go pick him up and bring him back to my house.
Often, his mom steps outside to send him away with snacks like bags of mixed nuts or strawberries since Jackson insisted on retainingcontrol of his diet. She hasn’t bothered trying to talk to me much since our first meeting. Did she realize I couldn’t hear a single thing she said? There’s really a lack of effort on both of our parts here, and I’m not inclined to make any changes to that.
As annoyed as I am with my parents, I’d rather see them than Jackson’s parents—but it’s his mom and dad who I see the most these days. Though they’re a bit cold to me, I know that they’re grappling with their son being newly disabled, probably wanting to disguise and rectify that as best they can, but he’s dating someone so obviously disabled that they don’t know what to do about it.
Some people who grow up Deaf, especially from Deaf families, don’t consider themselves disabled. Yet I don’t mind the label. Iamdisabled. I want to pursue advocacy for the community as a whole. Despite what people may think, disability isn’t a bad thing; it’s not an offensive word or something that needs to be skirted around. It’s straight to the point.
That being said, I don’t know disability the way Jackson is experiencing it now. I’ve never temporarily lost a sense that I was used to having my entire life. I’ve never been hit with taxing fatigue that makes it tremendously difficult to get around. I’ve never lost feeling in my hands or feet or had any sort of mobility problems.
Also, Jackson doesn’t have any community of his own yet. He’s facing pressures to push through things and “overcome” his disability. That can take a tremendous mental toll.
Trying to be more informed, I googled multiple sclerosis, which was a scary space of a lot of doom, despair, and unknowns. I stumbled upon many articles about “dating with MS” and people being afraid to share their diagnosis. It really pained me to learn that often partners in committed relationships will end things because they don’t want to deal with their loved one’s disease.
I’m doing my best to not let any of this weigh on me. To go into this relationship with the excitement it deserves and to let Jackson, not Google, tell me what he needs. And knowing firsthand how family can make things difficult, I’ll be sure to be pleasant around his parents, not to add any drama there, either.
Which is why it really,reallypains me to admit to myself that sometimes I miss Cody’s Deaf family and how easy they all were to hang out with.
Chapter Forty
Jackson
Each day, myvision gets clearer. The pain subsides. The dizziness wanes.
Unfortunately, some things stick around. Extreme fatigue. Muscle twitches. Little shocks in my arms. A vibrating sensation up my spine. Irritating, yes—but considering where I was a few weeks ago, I’ll take it. Even though it’s taxing, I never take walking for granted now.
Mom drives me to all my follow-up appointments, and boy, there are a lot of those. More bloodwork, more MRIs, and a bunch of different examination tests of my speed and function, such as walking down a hallway or putting pegs into a board. Finally, it is time to decide on my treatment.
“I’ll go with the infusions,” I tell the neurologist, who then turns me over to the MS coordinator to get logistics arranged.
