An Open Letter to the SSA
Dear Mr. D—,
While I was assured by the forms sent by the SSA that “the determination on this claim was not made by my own doctor or by any individuals or agencies who may have submitted any information about this claim,” you were the “point person” on my claim, and so I am communicating my disappointment to you directly. I will, of course, follow the proper channels and appeal the agency’s decision.
I am not surprised that the medical evidence shows that I am “able to perform my usual daily activities on a regular basis.” Yes, I can eat, sleep, walk, talk, get dressed, and use the bathroom all by myself without help. What I cannot do is support myself and my 14-year-old son because most of the time I either have a migraine, am getting a migraine, or recovering from a migraine. You can’t SEE a migraine. Dr. K—, the supposed neurologist to whom you sent me earlier this month, asked me almost nothing about my migraines. He seemed far more interested in my diving accident from 1988 and the fact that I turned down his Tom Petty CD in the waiting room (which I did, by the way, because I knew it would give me a headache to sit in a small, airless room with fluorescent lights and loud twangy music). A robot with a rubber stamp would have been just as effective as he was.
Here’s the ugly truth: Yes, right now I can write this fairly coherent message to you, because it has been two wonderful days that I have gone with no headache—a rarity in my life. Earlier this week I had a “small migraine,” just a 5 or so on the 10-point scale, which meant I only lost one full day of time that I could work. Anything above a 5 and you have to start adding in the 4 or 5 hours (minimum) when I am starting to get the migraine and may brain starts to go “stupid” (my word for it, not the medical term)—I lose the ability to speak or write in correct sentences, I forget words, as if my brain’s thesaurus has gone offline, and I can’t concentrate.
As you might recall, or probably not, I earn my living by my brain: I am a writer. So that’s 4-5 hours in which I may be able to sort-of work, but will have to probably re-do before I can send it out, plus another 8-12 hours in which I cannot work at all (I might as well be a blind monkey at a typewriter with no paper), and then another 4-5 hours for my brain top ramp back up to its reliable self. Do you have any idea what it is like to be a former Phi Beta Kappa, summa cum laude graduate with a Master’s degree in writing, a published writer and respected editor, and to be incapable of writing a sentence that makes sense for 1/3 to 1/2 of your life? No, I’m thinking you don’t. So let me tell you what it’s like.
I recently acquired a great client. We started out with a bit of freelance work, and I was easily able to slip it in between migraines and the work from a few other clients. Then they liked my work so much that they sent me more. In June I had more migraine hours than non-migraine hours. The result? That client got frustrated with my delays, and has stopped sending me work. Here’s the reality: because I lost out on the couple hundred dollars a month I was earning from them, I fell behind on bills. My Internet: shut off. Phone: shut off. Electric: partially paid to stop shut-off. Car insurance: cancelled (which, this being Massachusetts, means my registration is no longer valid. Because parking costs me $48/month, I had to move my car to a friend’s house until I am able, someday, to get insurance again.) Rent: August only partially paid, and September…not looking good, with a letter sent threatening eviction. If I didn’t have food stamps I would also be in serious trouble eating, but I have been okay with that. (Thank you, SNAP.) And my 14-year-old son? Apparently he decided that he was making my life too hard because I couldn’t keep up, so he has run off to live with my ex for a while—a person he despises but who happens to be rolling in money.
My gp knows how bad my migraines are. My therapist knows. Even my neighbors, former work colleagues, and old clients know. But you want to really know? Ask my friends and family from the past 50 years—the ones I have had to bail on repeatedly because I can’t follow through on plans because I have to stay home and throw up and burrow my head in ice for 12 to 48 hours. Ask the clients who find me “unreliable” for medical reasons. Ask my son, who has seen me more times than he could name, clutching my head, running to the bathroom, laying immobile in a dark room with an ice pack over my eyes.
Migraines are invisible. But the toll they take on my life—and the lives of my son, my friends, and my girlfriend—are very visible. I can’t even send this email to you until I go to a free WiFi spot. Pathetic? Yes. That is the state of things for this “voted most likely to succeed” 54-year-old single freelance writer—and perhaps soon to be homeless person. Melodramatic, you say? I wish. It’s just the way things are.
Even with disability I would still have remained working as much as I do now. I would have had to to support myself and my son. But perhaps I could have managed to keep up with my bills, and maybe even eventually save up enough to have first-last-and-security so I could afford to move to a cheaper apartment (which I cannot do now). I didn’t apply for disability based on my depression and “suicidal ideation,” and I told you that from the beginning. No, it is the migraines that are making it impossible for me to live. They have not abated with menopause, so I can only assume that I will have them for the rest of my life. I guess the good news is that the financial stress will probably kill me sooner rather than later, so I will only have another decade or two to suffer through.
I have to ask, if disability is not for people like me, who are working as hard as they can and still can’t keep up, who is it for?
P.S.: FYI, the tingling in my scalp, vertigo, and lightning bolts in my eyes tell me that a few hours from now I will be again burrowed into my bed with ice packs. So I’m off to do what I can to minimize it, as I always do: drink a ton of water, inject myself with Imitrex/Sumatriptan, take 4 Excedrin Migraine, drink some super-strong coffee, and sit with a cold washcloth across my face for a while. Have a nice day.
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