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Accepting My Disability and My New Limits

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August 3, 2016. After months of drawing and saving up, I permanently affixed a symbol that meant so much to me on my back.

A lotus flower: as a lotus flower is born in the water, grows in the water and rises out of the water to stand above it unsoiled, so I am born in the world, raised in the world, having overcome the world, live unsoiled by the world.

Fortitude: courage in pain or adversity.

I struggled through high school and felt extremely accomplished in graduating and taking the next steps forward. To me this summed up what I had gone through and would serve as a reminder that I could get through anything.

What I didn’t have was a true understanding of fortitude. Sure, it felt like it. But I didn’t.

The problem was, I wasn’t really doing the whole “courageous” thing the right way.

I understood the definition of “strength in the face of pain and grief” but I ignored the first part of “the ability to do something that frightens one” for too long.

After senior year, I was forced to quit my job when I couldn’t get my shift covered for the second week in a row, because I wound up in the hospital on the same day, two weeks in a row.

I shrugged it off as being the restaurant industry.

In the middle of Summer ’16, I rode alongside my mom up to Clemson for orientation, feeling nauseated the whole trip. My fingers and lips tingled.

I met all sorts of new people that all shared the same hope of what their next four years would look like. They all were bright eyed and ready to be friends with everyone they met. On the second day of orientation,  I couldn’t even eat I was so sick. That night there was a big “bash” in the bowling alley. I left early and went to bed.

I found out I was allergic to the medication I’d been prescribed. I shrugged it off and started a new medication. 

A week later, I was back up by Clemson for camping. The trip was fun until I felt nauseated after we grilled burgers. I ended up calling it a night early and crawled into the tent. I was shaking so much you could have sworn I was having a seizure. Luckily I was with an army medic who had me drink some water and eventually helped me get to the ER. I thought I had been bitten by something in a swimming hole and was having a reaction to that. I was treated for my migraine and given a CT scan without my consent.

The incident was brushed off and I started yet another new medication. 

The summer was over and I was off to Clemson for good. No car. No money. No real treatment. But here I was expected to have the time of my life. Let’s ignore the fact that the architecture program doesn’t start off slow. I had eight hours worth of work after the first class. That alone made it harder to go out with the people I’d made friends with at orientation.

When you start a new medicine you don’t also get rip roaring drunk, so I spent a lot of time helping my roommate get ready for her night out. I stayed in.

I went out twice with this new group. But after declining to go much more than I said yes, I simply didn’t get invited anymore. I was boring.

It became clear that everyone I met was still stuck in “high school” and still loved drama. No one cared about their education and no one had a job.

I did amazing in all my classes, but my migraines almost caused me to fail calculus; I mean, who purposely takes an exam upside down while blind?

I brushed it all off. The people I met. Calculus. I assumed my personality just didn’t fit with theirs. I got an accommodation letter allowing me to reschedule exams on short notice. 

By second semester, I hated everything about that place. I hated orange. I hated my roommate. I hated the program I was in. I hated my professors. I really only liked my job. So I picked a school and I transferred.

I chalked up my migraines to be something caused by the stress of driving home every weekend along with the amount of hours I had to put into projects for architecture. I joked that I couldn’t see. My teachers were more understanding if I couldn’t make it to classes. I rescheduled exams.

Classes ended and I stayed for the summer to keep working. The heat was ungodly that summer. I spent my time off locked up in my room sleeping when I wasn’t tossing and turning because of pain.

I decided moving to a cooler place would be the solution. 

Before I’d even gotten up to Wisconsin, I’d accepted a job with Ethan Allen. My new classes started the same day my new job did. I jumped in head first and buried myself in a million tasks. I was doing better.

But then mid-September, the migraines started. Maybe it was the seasons changing. Maybe it was because I still didn’t have a doctor up here. Maybe it was because I never had a day off. But it was getting worse. I struggled through my exams and was thrilled for winter break to be in session. I had recognized I could no longer “make plans” because chances are I wouldn’t feel good enough to follow through. I canceled on family for Christmas Eve because I knew the noise would be too much.

It became clear that any sort of gathering would be painful for me.

I went up to visit my sister and spent the majority of the time in her guest room in pain. I started massage therapy hoping that would help ease the neck tension.

School started back up and I got extra accommodations that would prevent me from being penalized for missing class. I missed a lot of class.

I blamed it on my new neurologist taking me off my medication. That was part of it, but going back on the medication didn’t make the migraines just stop. 

I started taking pain medication every day. I started missing work. In six months I hadn’t missed a single day.

It became my goal each week to at least attend half my classes. Half. I considered medical withdrawal. I missed three exams. I pushed a final presentation back three times and thought my teacher might just fail me.

I quit my job because of some shitty circumstances. Then I had to find a new job during finals week.

I finally got in to see a headache specialist. He diagnosed me with medicine overuse headache on top of chronic migraine and prescribed a week of DHE injections, which I failed to go through with.

I convinced my new boss I was able to work despite disclosing my migraines. I then had to push back my start date to be hospitalized for the DHE. But I said I’d be fine after the procedure. 

The new job was great, but I was working well over 40 hours a week as a part time employee. After we hired more people, I transitioned to closer to 30 hours a week.

But the days in between couldn’t have been considered days at all. I spent more time wrapped up in blankets unable to pull myself up to even use the bathroom. On days when I had groceries, I didn’t have the energy to cook, so most of my food would spoil.

I realized what bad shape I was in and halfway accepted that I’d have to quit because I was missing work too much.

My boss allowed me to work on a reduced schedule.

But then it finally hit me.

You know how you see those “Road Closed” signs that say “local traffic only?” Well I’d been driving past those signs and successfully making it through to my destination. Some times I’d have to reroute a little; other times I’d be navigating through a maze of cones, but I’d eventually get through. This week I finally turned down the wrong road and the road itself isn’t there anymore. They ripped it out.

Now I understand fortitude. I understand courage. It isn’t smiling and pushing through the pain. It’s accepting the pain and working with the pain. Not physically going to work with the pain, but adjusting who I am 100 percent because of the pain. 

It’s deciding that I need my degree more than I need the job I love, because the job I love is killing me and the thought of managing work and school without ending up in the hospital each week isn’t realistic. 

It’s accepting that it takes more courage to stand up for my own health and to stop pushing myself so hard than it does to push through and pretend I’m doing OK. 

My “strength” in the face of pain is no longer pushing myself beyond my limits. My strength comes from acceptance. My strength comes in letting myself cry in the center of my kitchen floor while I wait for my chai to heat up knowing those tears will cause more pain.

In the words of Hilary Mantel: “fortitude… it means fixity of purpose. It means endurance. It means having the strength to live with what constrains you.”

Originally published: August 13, 2018
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