“Are you very busy?” the text read. When someone close with you types that you become un-busy.
I’ve been in Philadelphia a week dog and house-sitting, having a vacation. The first four days my body slept.
Literally about every two to four hours I slept. I woke with tics still like at home, so tired, took medicine and went back to sleep with the exception of sleeping whenever during the day. Suddenly one morning I woke at eight am full awake. Now, It’s not like I was going to run a marathon but I was ready to have coffee, see the agenda, take the day on, all before getting into the shower. I was planning in my nap schedule and knowing that while the other days had been great, today would be savored because it was a day with all a Spoonies spoons (The Spoon Theory written by Christine Miserandino). No, not as many spoons as a person without a permanent illness but more spoons than I’ve seen in a long, long time. I mean, I only woke one time last night, needed no medicine and went right back to sleep. Simply sleeping and getting the right medicines and schedule. Even screwing up a little on food was easily remedied. Besides, eating Cajun wings is worth the pain once or twice a year. Ok, I should have drawn the line at the Old Bay fries but when you made it up to zero, what I call a Positive Zero, a good day for a Spoonie, a day of reckoning for the world, you live a little. You hit baseline and are running with the big dogs now.
When this text came in I had a bunch of spoons, I had a spoon to share. He is another permanently sick person and needed to talk to someone who knew the frustrations of dealing with every nuance of illness, dealing with medical issues, the medical world, your every day existence, trying to keep a living going and business crisises that occur (hard enough without an illness) and the social and political issues that lie behind but affect our very core of living. Others don’t understand why this gets such a visceral response simply because their life isn’t controlled by it, the laws of their “land” aren’t made by these very issues in every minute detail. It is an alien land so to them it doesn’t exist or doesn’t exist to the extent or power we say it does.
“Why don’t you try alternative medicine?”
Alternative medicine is one many of us would try. We want to heal our bodies, to preserve their life, to gain our lives back or get a new one that works with what has changed within them. Alternative medicine could offer that to us. However many insurances will not cover them or cover them very minimally. Many of us have already tried what we could on our budgets even from snake-oil salesmen. The things we know work are out of our financial reach, many of us are already disabled, living on more than fixed incomes, they are incomes on which we aren’t even making it. Our lives are affected in other ways, I’ve no license due to seizures and live in an area with isolated public transit and medical transit makes an appointment a spiders web to traverse and an all day thing. Sick people doing an all day thing. How do I get to appointments often fifty or seventy-five miles away? How do I pay hundreds for an appointment, then the treatment and then any medicines. I hope to save enough for my medical cannabis license; the licensing fee, plus doctors appointments not covered by insurance, then any medicines especially since I want edibles to be easier on my lungs in some way.
Politicians want to crow about the opiate problem in America and yet they want to shut down the most benign medicine that could be accessed by individuals and is safer than alcohol. For those very reasons they will villianize it until they find a way to control it and bring in political yet privatized companies to use it for their own huge profits and mark ups like the Epi Autoinjector. Then it will be, suddenly, a life giving, God given, medicine, long overlooked … Yet pills, pain pills, benzos and others of various degrees and reasons are prescribed with a simple diagnosis. The opioid epidemic begins. People are cut off and yet are started legitimately. I was given so many different medicines before this current pysche provider (I’ve been with her for almost eight years) without so much as one physical test ever being performed to find out if there was an organic problem first. A diagnosis was given and pills dispensed. No options were given to me in hospital. A diagnosis was given and pills given with no options. The pain in my kidneys, I could say yes or remain in pain. Seizures, never was medical marijuana given as an optional therapy to the Klonopin therapy for my tics and seizures. When asked I was told if I went through these medicines and these medicines as if it was the legal expectations when they were, in fact, that particular doctors expectations.
So as you can see, while we’ve made strides legally and it’s also but a small scratch in the surface. They allow us one step forward to shut the public up and make bills that seem ok but when read by lawyers shows monopolizing by large companies. It’s two steps back when they repeal or change laws in the places it’s already legal. It’s not the great big freedom people think it is in the realm of the sick. Let’s not even go into people who get wrongfully arrested or have their medicines confiscated.
There are many other alternative medicines also such as alpha waves, which was our topic of discussion with a machine so far out of reach it cost more than the mattress being saved for and coveted. I can only imagine how much my CPAP machine would have run without medical machines being paid for, which was the original issue and why I couldn’t get one. I tried an application for one through a charity and was never contacted even after making calls on voice mail.
So, yeah, I get it, I really do. Call us resentful, unable to let a point go, even looking for a reason to be angry. Tough shit, go for bigger guns if you want to really make an impact because we are resentful and we are angry and some of us aren’t going to let a point go. Imagine if after every movement you had to think about your next activity and whether or not you could, had everything necessary, needed to pack a bag of meds , could you nap, would it be all day, will people be ok with you napping because you don’t look sick, what if it’s formal, do you have a way home, ad nauseam. Now you have some condescending ablist telling you who and what you are without having the slightest insight into the terrain of life.
When he was done he was less “Argh” but not by much. It’s hard to let go of your everyday life. He helped me, though. I hope it helped him at least take the edge off.
I’m so grateful for this time, for this sweet dog, this sweet house with trees in a great neighborhood in a fun city near my wonderful kid and grandson (Who is a spitfire and made it all of about five seconds with the foam sword I bought him before poking some random girl with it. I get him in trouble even when not trying.) When I go home I will be at zero, baseline. That’s a positive zero. I’ve got spoons and zero fucks to give.
Spoon anyone? I can spare one.