I Don’t Know

June 30 was the year anniversary of doing physical therapy to try to straighten my spine.

Actually, no. At that point we didn’t know how badly my spine was twisted, so I had to do physical therapy for six weeks to satisfy my insurance company’s requirements to get the MRI that would reveal the damage in my spine, hip, and pelvis. It wasn’t until after the MRI and being told what kind of physical limitations to expect that I decided to prove them all wrong. Nothing motivates me more than other people trying to tell me what I can’t do.

So, I’d been planning on making a video about what the journey this past year has been like, but in true chronic health condition fashion, my kidney decided to flare up and that killed any plans I had about anything. To be honest, that in itself conveys the the road I travel better than any video of me sweating, swearing, and crying my way through a year of physical therapy ever could. I do know that I’ve made huge strides in the past twelve months, and I’m incredibly thankful to God that He brought me further than I ever thought I could go, but I feel like a video would send the wrong message – that there is an “end” to all of this. That seems to be the consensus of opinion based on the questions I’ve been dealing with for the past few weeks regarding The Future. I feel like if I shared the details of how I built up enough muscle strength to stand straight despite my twisted frame it would only be met with a thousand comments of, “Great! Now what are you going to do with it?” And here’s the answer:

I don’t know.

“How many more hours can you work before it messes up your health insurance?”
“Not many, but I don’t know.”
“We might be able to compensate for it. What’s your medical cost?
(I wasn’t sure if this was a question regarding the cost of my health insurance, or how much it would cost if I had to take a cheap plan with a huge deductible, but it was the same answer either way.)
“I don’t know.”

“You’re feeling better and the world is opening up again, so what are we going to do this summer?”
“I’d like to go to the beach, but my heat intolerance hasn’t been tested in a while, so I don’t know.”
“You shouldn’t be out in the sun like that anyway. And you can’t ride the rides. Or eat the food, so what would you even do there?”
“I don’t know.”

“Kat, our bookkeeper is planning on retiring in the near future and we thought that you could take over for her. When do you think your health issues will be resolved enough to do that?”
(Ignoring the assumption that I even want this.)
“My health issues aren’t ever going away. They’re just coming under better control. I don’t know if I’ll continue to improve or if this is it.”
“Well, when will you know?”
“I don’t know.”

“That’s great that they finally fixed your GPA, Kat. When are you going to be done with school?”
“Well, it depends on how many classes I’m able to handle without putting myself under too much stress that I start to flare, so I don’t know.”
“Well, how much stress can you handle before that happens?”
“I don’t know.”

“We’re ordering food. Can you eat anything from Adolfo’s?”
“I’ll have to look at the menu because I don’t know.”

“The cabinet is overflowing with prescription bottles. Why doesn’t your insurance allow you to get a three month supply of your medication?”
“I don’t know.”

“You’re really thin! What size do you wear?”
“I don’t know.”

“I don’t want to waste my life with this job. I have too many other interests to explore. My dream is that you start working with me, and then I cut my hours, and then I fade away and you take over. But I don’t know what your dream is. What do you think?”
The words “I don’t know” were on the tip of my tongue. They swelled in my mouth, pushing against my teeth to get out, but I refused to say them another time. “I don’t know” became a lump in my throat that I couldn’t swallow, and still I clenched my jaw shut, choosing to choke before I’d let that bloated phrase escape from me again. I pursed my lips together, trying to hide the effort in a determined smile when I felt “I don’t know” shiver up my cheeks and into my eyes, pooling and spilling over before I could stop it. The words streamed down my face in two plaintive statements.

I don’t know. I don’t know.

I clamped my eyes shut to keep them from saying any more, but they continued to seep on both sides.

I don’t know. I don’t know.

I blinked furiously trying to bat the words away, and instead it was an arm ushering them into the world, “Ladies and gentlemen…”

I don’t know. I don’t know. I don’t know.

And then people became upset because they thought I was crying when it was only “I don’t know” running down my face, collecting into a puddle of uncertainty that seeped across my notebook.

“Kat, what’s wrong? What is it?”

I don’t know.

PT Session #117

Hair Today, Gone Tomorrow aka Thanks Again 2020!

I knew that the week of January 17th was going to be insane. I had immunotherapy on Monday, and then classes started on Wednesday, which was the same day as the inauguration – and I know I wasn’t the only one who was stressed about that. Given all of this, and the fact that the first two weeks of January had been insane, I said that I didn’t consider 2021 starting until after Biden became president. Well, that was a mistake because 2020 saw that it had extra time to do something shitty, and so it did.

On Sunday of that week I had my cousin* trim my “pandemic hair” because, even though I was growing it out, it was looking really ragged after not being cut for over a year. After my cousin trimmed about four inches of ratty ends off of my hair, I decided to cover my silver while I was at it since I was also going to be adding another year to my age that week too. After doing that I was too busy to pay any attention to my hair again until the end of the week when the dye had set enough to wash it. It wasn’t until I went to pull my hair back into a ponytail the morning after I had washed it that I noticed there was a lot less hair to gather than before.

“What the fuck?” I muttered as my hair band wrapped around my ponytail several more times than was required before to hold my hair in place.

Unfortunately I had been getting ready for a Zoom class at work and this was the moment that my professor decided to let me into the meeting and, though my video was off, my microphone was on. It was enough to take my mind off of my hair for about five minutes because throughout the entire session my hand kept reaching back to grip my thin ponytail, hoping it would magically feel normal. When class finally ended I ran into the hall to look at my hair in the mirror there, and it only took a glance to tell that something bad had happened to it.

In the midst of this crisis my phone was blowing up – because this happened to be on my birthday – and I could feel my abdomen beginning to cramp as I tried to field well wishes through my rising panic over my follicular situation, which meant the stress of everything was sending me into a flare.

A few hours later I was able to go home and show my mother my ponytail to get her opinion. I really, really wanted her to say that it looked fine, but she was honest and agreed that my hair looked a lot thinner. 

“Is it the way that it’s cut?” she asked.
“No, she literally just did a plain blunt cut to remove the dead ends,” I told her. “Nothing like layering that would change the way it looked.”
“Do you think it was from your immunotherapy?”
“I don’t think so. I’ve had enough times, and never noticed any hair loss before.”
“But you’ve been having reactions during your treatment. What if it’s from that?” she asked.

My mind was racing as I tried to think of all of the things that might have caused my hair to suddenly disappear. Was it because I was underweight? Or because I’d been very anemic since Christmas? I did notice that I’d been shedding a little more hair than usual, but this was so dramatic it didn’t seem likely. Was it the hair dye? It was the same one I’ve used for several years, though in a darker color, so I didn’t think it could be that.

“I don’t think you shouldn’t continue the immunotherapy anyway,“ my mother pressed on. “There has to be another treatment that won’t give you anaphylaxis.”

I shook my head because we’d been through this discussion a number of times. “My insurance won’t cover another option. You know this. It’s either deal with the reaction, or rely on pills that make me feel like garbage every week when I take them. The immunotherapy is only one day of feeling sick every six weeks. And it hasn’t killed me yet.” I paused. “But if it is what’s causing me to lose hair then I might rethink it.”
My mother looked at me.
“Yes I will accept the possibility of having a lethal reaction to my treatment but I will not accept losing my hair!” I huffed, then stomped down to the bathroom and closed the door. 

It was the first time that I was alone and could really examine my hair at all angles. The mirror above the sink was long enough to see down to the tops of my legs so I twisted around to see how my hair looked down my back. I could easily see the grey of my shirt through the thin curtain of hair laying against it. And yet I still couldn’t believe I was really seeing correctly. I ran my fingers through the hair on my scalp. It didn’t seem any thinner there, but as I continued down just past my ears there was a dramatic difference in volume. It was like half of my hair broke off from there.

I took my hands out of my hair and just stared at myself. Staring back at me was a person with hollow eyes inside a gaunt face, with cheekbones that looked cadaverous, all framed by lank hair hanging in thin ropes like broken party streamers. Someone whose right hip was now noticeably higher than the other due to a crooked spine. Someone who was too skinny, and yet had an inflamed abdomen that was starting to distend like a starving child’s.

Someone who was now another year past forty.

I was too upset to even cry. I felt like all of the hard work I’d done, and all of the progress I’d made, and everything I’d been proud to have accomplished over the past six months to put myself back together, to try to be normal, was bullshit. No matter how hard I pushed myself, I was never going to be normal. I was never even going to look normal. I’d been trying so hard to become who I had been prior to my health crash, and now my long hair – one of my defining characteristics – was gone. It’d be at least a year until it would be long “enough” again. Another year to add to the nearly ten I’d already spent getting my health under something that resembled control.

But I’d never have control. And even if I’d found some way to be – or at least resemble – the person I’d been, I’d never have that time back.

I came out of the bathroom and threw myself into scouring the internet on the best ways to make hair grow faster, and though there are things I can do to facilitate its growth, the final answer was the one that I feel I’m always working against: time.

It’s been about six weeks now and I think I’m finally ready to make the jump and cut the handful of hair that did not break. (Explanation of what happened will be added separately since you’re probably already sick of hearing me whine about something so stupid as hair.) I’m not thrilled, but I’m trying to not be a big baby, and to keep it in perspective. I know it’s only hair. I know it’s ridiculous, and it’s vain. I know it’ll grow back. I know I should be thankful that I haven’t lost my hair the way that others have. I also know that I should be thankful that my hair was long when it broke because it could’ve happened right after I got sick and I would’ve had nothing. 

But it’s another aspect of myself that was taken out of my hands. And I’d been growing it out to donate, so if I’m cutting it then I’m going balls in and cutting the full 10 inches required. It’ll bring my hair up to about shoulder length which is “longish”, but shorter than I’d planned. (And then I just pray that my hair is still donatable because if it’s not then I don’t want to know.)

In a way it’ll be a relief to finally make the chop because I’ve done nothing but obsess over my hair these six weeks, and when I do that I ignore or disparage how much better I’m feeling and functioning today than I did a year ago at this time. Which horribly ungrateful of me. I’m honestly very thankful to have made it to where I am now. It’s not perfect or “normal”, but I’m blessed because I’ve come further than I thought possible. And I’m not done yet.

*Cousin is high risk, already vaccinated and I’ve lived in a bubble for a year now so we were following COVID19 safety guidelines.