I have the word “fight” tattooed on my left forearm.
I got this tattoo in early 2009, not knowing how much I would still need it 16 years later. It’s a reminder, on the wrist I used to cut, to keep getting up and trying again.
On that same wrist, still visible, is the scar from the first time I hurt myself on purpose, 30 years ago. That is not the only scar. There are many scars. But there is also a reminder to not let the darkness win.
I’ve had almost daily migraines since my brain injury four years ago, but they’re getting worse now. Most days, by the end of the evening, it hurts to even have my eyes open, or to be in anything but very dim light. Sound bothers me. Movement bothers me. My brain doesn’t work right, and I get severe nausea some days.
I am always exhausted. I take hot baths in the dark.
I will be 44 in April. I don’t want to live the next 40 years of my life this way.
I have tried new, just-approved medications. I have taken the tried-and-true migraine meds. I’ve swallowed thousands of pills and given myself injections. I’ve gotten Botox. Nothing works. Opiates help but I’m only given a limited number of those, and some days they don’t even seem to make a dent.
When I tell you that my pain gets up to a 5 or 6 out of 10 almost every, you might think I’m telling you that it isn’t that bad. But I’ve had multiple kidney stones, one of which had to be removed surgically. I’ve broken my clavicle on three occasions. I’ve had multiple toothaches at the same time. All of those hurt a lot, but none are a 10 on my pain scale. 10 was when I had an abscess in my face. 10 was screaming “what kind of fucking hospital is this?” when I had been given the maximum dose of intravenous Dilaudid and I was still in agony.
Pain that hits a 5 or 6 almost every day is enough to seriously impact my life. It’s enough to make me flirt with the idea of razor blades and high bridges.
I have good days, when the painkillers work and I manage to laugh and enjoy myself. But I have bad days when I feel truly hopeless. I keep picking myself up and continuing to fight, but it is getting harder and harder to do. Four years now of accepting my diminished potential, of letting go of dreams, of trying to dig my way forward and transcend, somehow, the absolute shitshow this brain injury has brought into my life.
I am stuck in a place of making do and settling for less than I hoped for. All because someone else decided he knew better than I did about how I tolerate a certain kind of anesthesia, and I reacted the exact way I’d told him I would– which is to say, Versed makes me try to fight off whoever is trying to operate on me. Rather than stopping the procedure, he or someone in his office slammed my head into something with such force that I am still affected every single day by the injuries they caused. And I will never know exactly how it happened. I just woke up with a bump on my head and a moderate amount of brain damage.
There’s nothing anyone can do, it seems. They can’t make the headaches stop. My therapist can’t help me process this so that it’s somehow okay. It’s just awful. It continues to be awful. It has been awful for almost four years now.
I have lost so much, held on to what I could, and only managed to gain a little through sheer force of will. I don’t want this to be my new normal. I don’t want this at all.
We are raised to believe that if we’re good people, if we follow the important rules and try to be kind, if we persevere and strive, we can arrive at a place of contentment and happiness. I know now that it simply isn’t true. You can get utterly fucked by the fates in an instant, and nothing will feel safe, stable, or whole ever again.
I don’t trust contentment or happiness. I don’t trust stability or safety. And I wish beyond my ability to communicate that I had never gotten this wise. I’d rather be ignorant of all of this. I’d rather be stupid, safe, and happy.
I used to think that an unexamined life isn’t worth living. Now there are things I desperately wish I had never had to see.
All of that being said, I had a very good day on Sunday. I had a very good session with my therapist on Monday. I am continuing to fight. I am looking forward to my next Bacon Blue burger at our favorite bar. I might visit San Francisco in March, and I’m tracking the prices of airfare to Boston, Vermont, and San Diego.
On my right forearm, I have a tattoo of a human heart, and banners over the heart bear two statements in Latin: cogito ergo doleo and dum spiro spero.
“I think therefore I suffer.”
&
“While I breathe, I hope.”
With Love,
Kate
