Chapter 40 Skylar
Skylar
Over a sesame bagel with herbed cream cheese, I tell the girls about stenting.
“I’ve already gone down the medical rabbit hole of cerebral autoregulation and cerebral venous outflow disorders,” I say.
“There are many success stories with stenting. The possibility of improving my quality of life, even a little, is worth considering. But some people don’t get better. ”
“Rude,” Emy says. “I was gunning for the miracle cure.”
“Some people do well for a few years before experiencing high-pressure symptoms again,” I say, “suggesting compression might not be the only issue. There could be other procedures still down the road. Dr. Richardson said it’ll take up to a year to judge results.”
“Okay,” Analia says. “What else?”
“If the procedure doesn’t work, that’s one thing, but I’m not a fan of the risks: seizures, strokes, blood clots, hematomas, and brain bleeds.
I’d need to be on blood thinners and aspirin long term.
Some people develop another vein narrowing after the stent is placed.
There’s also the risk of persistent head pain from the stent irritating the dura.
” I look down at my plate, wishing I had easy answers.
“And someone in my IIH group died during her procedure, even though it’s rare. She was only thirty-five.”
“I remember you mentioning that,” Analia says. “That’s awful. When do you have to decide by?”
“I could get surgery whenever I want, wait list pending, because my stenosis is so severe. I just have to figure out if the risk of not doing it is worse than the risk of the procedure, especially since I’ve gone into remission before.”
After we make a pros and cons list, Analia summarizes, “Here are your choices. One, you get surgery this summer when you’re off work, leaving time to recuperate. You won’t need sick leave, and hopefully, by next summer, you’ll no longer have high pressure.”
I blow out a breath. “That’s so soon. I’m already on probation. What if I’m not recovered enough by recruitment season?”
Emy counters, “What if they don’t renew your contract? You wouldn’t have insurance to get the procedure done.”
Unease slithers down my spine, but Analia taps her notebook. “Option two is to stick with meds. We know they work for you, but we don’t know if surgery will. The longer you wait, the more research there’ll be. Downside: no pain control, lots of side effects.”
“Definitely fed up with the devil’s Tic Tacs,” I say.
“But it’s the least invasive,” Emy says, “and you might go into remission again.”
“The meds aren’t good to take forever, though.
I’ve already had four kidney stones, they’re giving me mouth sores, and I keep getting deep muscle aches—though that could be from IIH.
My ringing tinnitus is getting louder because the drug is ototoxic, which can lead to hearing loss, among other long-term effects I’d prefer to avoid. ”
But it’s easier to stop taking a pill if something goes wrong. Unlike a shunt, you can’t take a stent back out.
Analia circles option three. “Then you stay on meds for now, but if your symptoms get worse, or side effects increase, you opt for surgery.”
Emy sips from her iced tea. “But what if you go blind? Isn’t that common?”
“Vision loss can be reversible with surgery if caught in time. As long as I keep up with my eye exams, I should be okay. Dr. Richardson is referring me to a new neuro-ophthalmologist. In my IIH group, many people regained much of their vision within a few months after the surgery, if not all of it.”
“All right, then.” Emy leans back in her seat. “We wait. See how it goes.”
I smile at the we. I still can’t believe they’re sitting here with me. “If I knew there’d be no complications, I’d have surgery tomorrow. I wish fixing one thing didn’t open you up to a dozen new problems.”
Analia’s soft green eyes meet mine. “If you feel you need it, it’s okay to take that risk. You don’t have to justify it to anyone. And if you’re not ready and want to research more or consult other doctors, that’s okay too.”
“Thank you,” I say, my throat growing thick with emotion. “Both of you.” I open a memo on my phone. “If you have the spoons, I have one more thing I wanted to discuss.”
Analia, especially, looks a bit worn out. She said she might need more space than Emy or me because she’s not used to talking a lot in person except with Kalle. She also gets easily overwhelmed from sensory overload.
Emy perks up. “Ooh, did Pike already call you back?”
“No, this is about something different. It’s about me not wanting to go back to only online friendship.”
“I thought we already decided that wasn’t happening,” Emy says.
“No, that’s not what I mean. I had given up on this before—meeting in person, going to dinners, wearing actual clothes that aren’t pajamas outside of work.
I was fine by myself, as long as I had you two online.
Sitting in bed talking to you is probably my favorite activity.
” I grab their hands across the table. “But having you at my appointment was everything. Having you at my house was everything, even if it was overwhelming to have people there the whole time.”
Pike was a big part of this shift too. Our time together made me realize that being around someone in person didn’t have to only be emotionally draining. It could be affirming, fun, and even fulfilling. He gave me hope that someday someone would actually choose to be with me, no matter my health.
The truth is, I thought Pike might be that someone. But that person would stick up for us as a couple. And I’m not sure if Pike can stand up for himself, let alone us.
“I want to create something for people like me and Analia who don’t have supportive families. What the three of us have grown into is unique, but maybe it shouldn’t be. I think I want to start a type of care network.”
“Like mutual aid?” Emy asks.
“Kind of an offshoot, on a smaller scale, but a bit more like a support group that doesn’t only focus on sharing feelings.
I want to explore, with other disabled women, how we can support each other in daily tasks.
All of us will inevitably have different strengths and different needs.
Maybe sometimes it won’t work because we’ll all be out of spoons, and of course, we’ll still talk online.
But maybe by getting to know each other, we’ll find people in our networks who can fill a need.
Like a ride to the hospital. Or picking up groceries.
It doesn’t need to be labor-intensive help.
There’s emotional support. Researching. Sharing knowledge. I don’t want any of us to feel alone.”
“Would it be people from the online support group?” Emy asks.
“I haven’t figured out all the details yet. Do you think others would be interested? Would you?”
Analia hesitates. “I’m not sure. I like the idea, but I also like my life the way it is. I’m not a huge fan of change. This”—she gestures at us—“is a big step for me. I’d need time to adjust to another group.”
“I like it,” Emy says. “But I like being around people.”
Analia rests her chin on her fists. “I noticed. Why do you spend so much time online, then?”
She scoffs. “Because of you two dorks, obviously.”
“Aww,” I tease, but my heart is full.
After we say goodbye, I’m dying to collapse in bed.
But there’s something else I need to do before I chicken out.
Now that I’ve met Analia and Emy, things can change.
I know they’ll be there for me in person if I need it.
I’ll get this care network going too. While I’m building these relationships, it’s time to sever another.
When I get to my parents’ house, I remain on the front stoop until they join me. Then I take a deep breath.
“I’ve been tiptoeing around your feelings for five years,” I say. “Forcing me to be positive all the time is for your benefit, not mine. I know you’re uncomfortable with illness, but that’s not my problem. Do some research. Join a support group. Get to know other disabled people.”
Mom opens her mouth, but I cut her off.
“It’s not my fault I got sick. I’m no longer going to let you treat me like it is.
It hurts me every time you speak over me and make me feel unworthy because I haven’t gotten a shunt.
It’s a major, life-changing surgery. Yes, it’s helped a lot of IIHers.
It’s currently not the right option for me.
I don’t want to hear another word about how I should handle my condition. ”
Tears streak my cheeks, but it’s from relief. I’m no longer trapped with them as my sole support.
“I know my body best,” I say. “Not you. So, choose. Either you let me be open about my life—pain included—or I walk away. Either you love me unconditionally, or you get nothing.”
Mom’s red-faced by the time I’m finished, but I leave before she can say anything. This declaration is long overdue, and I’m completely out of spoons.
“Skylar!” she calls after me.
I don’t look back. I’m serious. Even if it hurts, I’m done. If they want back in my life, it’s up to them. Letting them make me feel less than worthy hurts more.
And I deserve better.