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?

Sincerely,

Max Gordon

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (9)
  • Naomi Jarvie-Thomas
    5 years ago

    Max,how brave and honest of you to put this out there for us all to read. I would not admit for many years just how chronic my Migraines had become and how restricted my was it was easier for me as a housewife and mummy to pretend I didn’t want a social life, disliked alcohol, liked going to bed early etc etc when really I was fighting every trigger to abort an oncoming Migraine or trying to be a Yummy Mummy, Wife, daughter etc Always feeling I was letting someone down has left me burnt out and emotional. I am very lucky to have a very supportive husband because GP and in general the Doctors in this country are absolutely not supportive. I did see one wonderful Neurologist Dr Mark Weatherall {based in London} amazing and supportive but highly sought after and therefore hard to see! Chronic Migraine is horrific but don’t give up Max you should be proud that you are coping and bringing up your son you have done so well to do that for 14 years ! Good luck for the future and don’t let one useless Dr make you feel negative go back again and make them listen!

  • Lillian
    5 years ago

    Max, Great letter I saw your appeal was denied but that was 10/13 I hope by now you have gotten some help. I applied for a received my SSD on the first try by myself with out an attorney. Rare i know, but i had other problems besides the migraines, I have Intracranial Hypertension for which i have had 8 VP shunt surgery’s in the past 4 years. also i had a 2 level cervical fusion in the past year of applying. I also have fibromyalgia. My point is I hope that you are not just focusing on the migraines let them know all of your medical problems, Keep very good records. On an odd note I had private disability insurance through my work however they denied me saying i was not disabled and SSA approved me saying i was. So i had to go 6 months with no Income.

  • kathy-phelan-delaurodelauro
    5 years ago

    I am not sure where you live, but please call Thomas Jefferson Hospital in Philadelphia, Pa. I had the lidocaine treatment and take mexiletine 3-4 Times a day. It has changed my life. Amazingly so. I get it trust me, 5-7 migraines a day and having to wake up at 4am to take meds to wake up at 6am for work. I am only 45 and felt 80! Much, much better now. Only get small ones..under 4 like 2 times a week and a good (?) One about once a month. I used to take same meds.Imitrex and fiorcet before work..I have fought my insurance company multiple times and WON!! They wanted me off on SSD, I refuse! When I went to TJHC Group of 10 and I was only one who worked, who raised kids on my own and both my kids get them as well, had a life and took clothes with me..not pajamas! One guy asked what I had..he wanted some…Dr told him I was top 5 for worst case ever seen and I said..don’t mean to Pisa some people off…but..motivation! I try so hard to not let this control my life. I wish you luck and will pray for you.

  • 2mnyheadaches
    5 years ago

    Thank you, for putting into words what so many of us suffer through. I hope your efforts to get disability are successful. I have never applied, because I am certain I would be denied. I just keep doing the best I can. Don’t give up Max.

  • Still Smiling
    5 years ago

    Your story brought tears to my eyes; I feel your pain (excuse the pun!) and I do hope that one day, things get a little bit easier for you. If you do appeal again, I also hope that they see sense and give you the help that you need! Stay strong Max xx

  • Christine Carlson
    5 years ago

    Some doctors are just plain insensitive, uneducated morons. The first doctor I went to, a neurologist, was about a week after I went to the ER for severe pain and puking episode – he diagnosed me with tension headaches. WTF?? The stupid neurologist whom I went to twice also told me, well you only get it twice a month like it’s no big deal, who care if 6 days a weeks your a zombie doing nothing and have to tell your employer you can’t work. He prescribed me a barbituate. What a complete moron. I took matters into my own hands, went on the internet, and after searching, have since found my own doctor specializing only in headaches and migraines – Diamond Headache Clinic in Chicago. She diagnosed me with menstrual migraine, explained how the whole brain works, etc etc. She prescribed Treximet. Don’t trust doctors many are ignorant and have no training, it would be like going to an electrician to get your plumbing fixed with some of these doctors.

  • maxgordon author
    5 years ago

    PostScript: I just received word that my appeal was denied. The SSA made no attempt to contact the people listed in my appear form, so I have no idea what they based this “new” decision on. —Max

  • maxgordon author
    5 years ago

    Nancy,

    I had hoped to avoid going through an attorney, but I believe you’re right. I will seek one out for my next appeal phase. Any advice on how to find/choose one who’s trustworthy and experienced with migraineurs? Thanks for listening. —Max

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Max,

    I’m so sorry about your denial. You may want to consider using an attorney who specializes in SSDI claims. I don’t believe they get pain until your claim is approved, but you will have to verify that.

    Best of luck
    Nancy

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