It Could Be Worse

but I'm letting myself be angry

I started the year with a neurology appointment. My neurologist is a saint. She believes me, and she refuses to give up on the pursuit of some form of relief. It has taken over a decade of constant pain to find a doctor with these qualities, basic as they are, and this month, I had to tell her that I am pausing treatment - not because I am exhausted or because I’ve found something that helps - but because I can’t justify adding to my increasingly burdensome medical debt. For the last year, together we’ve worked our way through the steady process of retrying medications and procedures in the hope that they would work the second time around. We’ve discussed new options, we’ve gotten creative, and despite the resounding uselessness of each of these treatments, the simple act of trying has been a refuge from hopelessness. That refuge is gone. 

I am sick of being grateful for the privilege of accruing more and more medical debt. The false gratitude is like expired cough syrup I can’t stop choking down. It comes in the form of it could be worse and this would have killed someone in a different situation and at least I have a high credit limit. Every time I am left sobbing on the phone with a pharmacy or a hospital or my insurance company, I spit out the ever present reminder to myself that I am lucky. I am privileged. I ought to just be grateful that my parents can help and that I have health insurance. 

For the length of this newsletter, though, I am just going to be fucking pissed. 

America is a homicidal falsehood that only serves people who are white enough, healthy enough, straight and cis and wealthy enough to survive it. My tax dollars are funding the genocide of Palestinian people rather than universal health care or homes for the unhoused. My tax dollars are funding the bombing and destruction of a land and a people, despite how badly those tax dollars are needed to fund our communities. The United States only knows destruction, and we should all be fucking pissed about it. 

Here, I am going to ask you to use your imagination. Please indulge me in taking just an extra moment or two of your time to really, actively try to imagine what a lifetime of pain feels like.

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Imagine that you are ten years old. You wake up with a migraine one day. Your skull feels like an overripe fruit, splitting at the sides. You stay in bed for a week. The bedroom curtains stay closed. Even your parents’ soft voices, asking you if today is the day you return to school are like nails on a chalkboard. Food loses its appeal and the sickly poison of nausea invades your bloodstream. It stretches from wall to wall in your stomach and makes itself at home. 

The pain does not go away after a week. 

The doctor says it’s a sinus infection. A couple of days later you learn that you are a Type 1 diabetic and will be sick for the rest of your life. You face your fear of needles and learn to give yourself the medication that will keep you alive. You memorize the rules and the injection mental math. You teach your friends and teachers how to administer life saving medication, should you have a seizure.

The headache never goes away. It gets worse.

You see a neurologist. They do tests and scans. You sit in a waiting room and you silently pray that there is a tumor. You don’t yet understand the real, genuine horror of cancer, but you are desperate for an answer and are young and naive. The scans come back blank, and the neurologist tells you to learn pain management skills. 

The pain keeps getting worse. You quit playing soccer. You start ending each night by praying to not wake up the next morning. Death, you know, even as a child, is the only escape from this type of pain. 

(Here I am going to remind you, because imagining pain is a difficult task, what a headache feels like. It is a rusty tire iron through the temple. It is a thudding, pulsing throb. It is blurry vision and creeping nausea and brain fog that feels like losing yourself. It is searing fire behind your eyes and the notion that something must be terribly wrong. Your brain must be bleeding. You must be dying. You aren’t, but every thought, every word, every movement of your brain in your skull feels like a new trauma. A fresh wound. This pain invades everything. Even your dream self cannot escape it.)

You miss the end of your seventh grade year. Your principal carries over the grades from your previous semester, because you are too sick to leave bed. You move schools and towns and doctors, and you spend high school swinging between attempts at normalcy, hospital visits, and weeks in bed. The pain, somehow, intensifies. It has now been years composed of months composed of days composed of hours and minutes and seconds, and not a single one of those seconds has been without the headache.

You miss the first week of your senior year because a medication has left you incapable of speech. You forget how to spell the word ‘what’ and your speech is slurred. You have never been drunk, but you wonder if this is what it’s like. You wonder if you will ever relearn the contours of language. You do, but you never forget that fear. 

You go to college thousands of miles away, desperate to escape your reality. You keep pretending at normalcy. You keep failing. The pain does not, will not, can not stop. It has been years of it. Stabbing, screaming, throbbing, piercing, suffocating pain. Every second. Every lecture. Every party. Every friend who believes you to be a dramatic flake. 

You transfer schools. You remake yourself again. Maybe this time, this time, you can outrun the agony. A neurologist takes $500 out of pocket and tells you to go on a diet. A professor tells you that you are a liar, and you give up on your future. You consider the merits of dying. You do not have the energy to do it; you only have the energy to answer the door when the cops knock - two wellness checks in a row. 

You pick yourself up, move closer to home, give up on school and big dreams and success. You try to find stability when your head is screaming screaming screaming. You wonder how it is that no one can seem to grasp what it’s like to have been in this kind of pain for this long. 

You are told, again and again and again, that it is all in your head. 

And it is. This headache, this head pain, is so intensely in your head that you can never escape it. You wonder, every single day, what kind of life, what kind of joy, what kind of hope is possible when every thought hurts. 

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This is my existence, and I am paying for it in sanity, in joy, and in, of course, money.

In January, I paid:

- $49 to a pharmacy for a last ditch new neurological device that may (but likely won’t) help manage my pain

- $121 for insulin (I exist in perpetual mild irritation that the vast majority of people around me produce this liquid gold naturally, for free, while I have to pay for it and stab myself numerous times per day.)

- $2 for hospital parking while having my blood drawn and an ECG completed¹

- $310 towards my existing bill of $1,568 at Mayo Clinic. This bill increases monthly and feels like an expense I’ll never catch up to 

- $100 towards my payment plan at the pharmacy that provides my Dexcom Continuous Glucose Monitor (CGM) supplies 

- $672 to the same pharmacy for the next three months of CGM supplies after they informed me that it could not be added to my existing payment plan. After telling them that this is more money than my next paycheck, I was given two options: put it on a credit card or skip three months of the supplies that help me prevent seizures.

In January, I paid $1,254 in medical expenses. The appointments, medications, and devices that this money went towards are almost entirely unsuccessful. I am in agony every second of every day, and I wake up every morning wondering how I can possibly keep going. I’m not even overspending for the sake of good health; I’m paying for survival, miserable as it may be. 

Still, I’m writing this with the ceaseless refrain of it could be worse.

And, of course, it could. It is worse for so many people. I can survive this. I have family to help with bills, and I know that I will likely always have enough insulin to stay alive. This isn’t everyone’s reality, and it’s something I can’t stop thinking about. Every single day as a disabled person, I am forced to intimately consider the fact that my existence and the existence of everyone I love - because let us never forget that we will all someday be disabled or in need of costly health care - is dependent on a system that does not care if people live or die. 

It feels like banging my head against a brick wall, and the best thing I could think to do is to write about it. I am sorry that this newsletter does not have a happy ending, but I hope this anger drives you to action. Thank you for reading.

1. Okay, $2 is nothing in the grand scheme of things, but if I’m paying Mayo Clinic $310 per month every month, I should at the very least get free parking. Also, I just found out that they completed one of the tests inaccurately and are now requesting that I do it a second time. Irritating.