By now, you know the story. At least some of you do.
It goes like this: A girl had a chance to take on the world, got lost along the way, and then grasped for air as a medical system ill equipped to manage patients, education, and actually provide care left her in the dark. The girl strung herself along helplessly through the end of classes, hoping if she just pushed hard enough, wanted it bad enough that the relenting pain would take a backseat to the life she was fighting for. Until she collapsed in a parking garage, couldn’t stand at work any longer, packed up her two bedroom apartment, took off her brave face and moved home.
Filling out the disability paperwork was freeing. It felt like all the pieces fit together and this was the conclusion.
Describing the way every aspect of “Quality of Life” had disappeared. Reduced hours at work. The huge amounts of accommodations at school. The inability to create new or sustain existing relationships. Grocery shopping went away, replaced with bi-weekly pick-ups that sometimes weren’t picked up.
Eight months went by, some spent bedbound, incapacitated by pain and medication side effects. Some spent with a bit more freedom, more time to catch up on crime dramas, take up watercolor painting, take drives across town to see friends.
It was perhaps the end of May, 2019, and I had a meeting with my lifestyle coach. I was a part of a trial group for a could be wonderful Lifestyle Program to aid in the remission of Migraine, it was very early in the program and much of the foundation they presented were changes in my own life I’d come to implement long before on my own. We were trying to find out what my stuck point might be. What was holding me back from realizing my full healing potential (don’t gag I know).
Now a stuck point is typically a term used for a thought that is holding us back, and perhaps that’s what my coach was looking for, but not what we found.
It clicked. I was starting to see some improvement, but I no longer had anything to gauge my success with. I was no longer a student and I no longer could work.
But that wasn’t all. For those eight months, I was cooped up in my bedroom relying almost completely on my parents for everything. I rarely cooked for myself. I rarely even planned out meals. I certainly didn’t grocery shop. Aside from a trip to Walgreens for shampoo or Starbucks for a coffee, I was mostly hidden away in my bedroom allowing myself to fully accept the assistance I’d been offered.
I had a lot more time each day where I considered myself to be productive, I could write for hours, paint for hours, lay outside in the sun, read on the porch, and still feel generally okay to watch tv or movies in the evening without giving extra thought to if the commotion on tv might be overwhelming.
My stuck point was that I’d relinquished most of my responsibilities. Now of course, this isn’t really a stuck point by therapy standards, but we took it as a place to start and a hump that I had to get over.
By all accounts, at that point in time I probably could’ve returned to school or work (remotely), but summer was approaching and from my perspective throwing myself back into everything based on my slightly improved health didn’t make any sense. I had to choose to start taking back responsibilities and see if I was even capable of being more independent and meeting my basic needs, or if I was only feeling better because of the complete ability to rest and have no responsibilities. This time also directly correlated with having officially run through all viable medical interventions, so shifting focus to my lifestyle was really all I could do. Aside from perhaps, ignoring it altogether and aimlessly floating in the pool until my mind turned to mush.
That June, I signed a lease in the city, a small studio apartment, that would allow me to answer these questions:
Could I sustain myself? Could I live on my own? Could I get myself to and from appointments? If I could do all of that then what? Where was my health at?
That June was the best my health has been in a long time, and I’ve been striving to get back to that place. I wrote the intro to this next chapter of my life and blog: Chapter Three, and I’ve learned a lot in that time.
What I’ve learned is that without new science and new medicine for migraine disease, I will probably never reach the point where I was at before. I will never be a full time student nor hold a full time job, especially at the same time. And that’s okay. I didn’t fail my experiment, but I got my answer.
I can live on my own. I can keep myself fed. I can manage short outings to grocery stores and coffee shops. I can spend a late afternoon on the beach. I can sometimes write for a few hours. I can sometimes cook elaborate meals.
But with all of life’s little demands just to stay alive, the limitations on my energy and my ability to be productive without being in severe pain is dwindled down to one or two hours a day where I can actually do anything. And that do anything time as defined by disability terminology would be time where I can participate in Substantial Gainful Activity – either making money via work or attending school. However, by disability’s standards only one or two hours, and not one or two hours actually promised each day, means very much still disabled.
And so I write this because part of me feels like I failed. Moving out of my apartment last spring, across the country with my parents, to live in an apartment below them feels like a failure. But the truth is, I’ve only traded one apartment for another and the only thing I didn’t meet was expectations set in place by folks trying to make money off of really sick people.
And I have to look back to see that really I just completed the experiment, and at the time deciding what was next had a lot more to do with other people, than it did me. I can’t hold a lease on my own, because being disabled doesn’t pay all that well.
Technically I guess my experiment has pushed me to take back all of the responsibilities, and now I have a much easier time grounding where my health currently is to reality. A lot of it correlates to how much food I’m cooking for myself and how well I can keep up with meal planning.
Reality is a little awkward right now, pandemic and all. Truth be told, it feels like this entire year was lost. Nothing meaningful has happened, my health hasn’t changed, and there are no options for moving forward. I guess a year ago I moved out of my apartment and my world has stopped turning. I just am.
There is no new chapter to start.
I guess my point in writing this is that almost two years ago now, we were looking to reach my full healing potential, to uncover barriers to that. And although I am far from what the program considers a success, I did not fail in doing so.
My biggest barrier to living my life was that everyone else was living it for me, now I get up every day and care for my growing collection of plants, cook and clean, plan small things I can do each day that bring a little bit of joy, and mostly rest.
That is my healing potential with everything available to me at this moment in time.
No amount of dietary changes, intentional comfortable spaces where I can truly relax, no amount of exercise, sunshine, mind bending therapy to adjust my thoughts, and so on will improve my healing potential.
I can only work to optimize each moment in each day, take my health for how it is, and move forward at a pace that doesn’t actively harm me.
But until medicine advances, this is where I am, where I can expect to be, and where I ask that you meet me.
As I am, sick as fuck, and not for a lack of trying.