Benj: I’m hitchhiking. Is it still hiking if you can’t walk? Hitchrolling? I’ve only run into one possible serial killer so far. My goal is 3.
He thinks he’s hilarious.
Me: No seriously
Benj: I am serious. Don’t worry, I’d just roll away. My battery is long lasting, so I can keep going even when they get tired.
Me: You’re not funny
Benj: Of course I am. What’s up with you? How are you spending your downtime, other than working and watching Global Games because you are the job?
Should I tell him? I don’t want to make him feel bad. But also, why didn’t he say anything to me about going?
Me: I thought I’d come and see you, but my plane almost crashed because of the storm and now you’re not there. I can’t believe neither you nor Mom nor Dad told me you guys would be away
There’s a moment before his response comes in.
Benj: Don’t go ballistic
His words have me immediately ready to go ballistic.
Me: Do I ever?
Benj: Not outwardly, but you internally freak out
See? My brother really does know me the best.
Me: I’m waiting and totally not freaking out at all
Benj: That means you are
Damn it. I hate it that my brother is always right.
Benj: I’m with my girlfriend. Before you lose your shit, we’ve been talking for about 2 years now. She’s come to visit multiple times. We planned this trip out to see as much of the country as we can. I have a bucket list you know and let’s be real: I don’t have all the time in the world. We have an accessible van and we’re seeing the nation. I was going to tell you when we head east, but I know you’re busy. I was going to surprise you.
I have to sit down to digest this news. I want to be happy for my brother. Ishouldbe happy for him. This is a very normal thing for a thirty-something to do.
But he’s not on a normal trajectory.
I’m not trying to be ableist or mean. He’s already outlived the grim lifespan he was originally expected to have. There’ve been some new therapies that have slowed the progress of his disease. He’s the first generation with his condition to live this long. I know this, and I agree that he should do as much as he can.
But have they thought through the logistics? What if something happens to his wheelchair? What if the hotels aren’t accessible? Who’s transferring him? Is it his girlfriend? Is she doing his toileting and feeding too? Benj doesn’t have much strength, and his joints are pretty contracted. Feeding, bathing, dressing—oh my God, has she seen him naked? She must have.
But any girlfriend would. That’s normal. I mean, I don’t think Benj spent a lot of time thinking about me getting naked with Mike when we were married, but you know it happened.
I guess I never thought about it happening for Benj. I’m happy that it has but ... why would he keep this from me?
He’s supposed to be my person. The person I tell everything to. Why doesn’t he feel the same way about me? I guess I always figured he didn’t have much to say because he didn’t have much going on. I didn’t pry because I didn’t want him to feel isolated.
Except now that’s how I feel.
I always thought Benj and I were a team. Even if I wasn’t there physically, I texted him daily. Multiple times a day.
Even now, he didn’t tell me her name.
He doesn’t want me to know.
I have never felt so alone as I do right this second.
