I have thought long and hard about the following. This is the part of the application that might be a throwaway. I’m not really sure that anyone at SSA will read this, but I’ve decided that I’m going to print it and send it in along with my standard answers to their questionnaire. If nothing else, it will make me feel better.
To the Social Security Administration:
You asked me to complete the attached form to include any information that may be useful in helping you to determine whether or not I qualify for Social Security benefits. I remember 24 years ago completing another form for another faceless bureaucracy that wanted to know if I had any additional information regarding my daughter’s death that may assist in processing our health insurance claims. At that time, I began another page in much the same way: “You ask me . . .”
That answer turned into an essay that encompassed much that had happened in those four harrowing months of my life. Tonight, I will try to encompass the significant things that have happened to change my life in the last nine years (give or take a year, here or there).
You may notice that I have taken quite a while to complete this questionnaire this time (yes, I have completed this same questionnaire two or three other times). You see, I wanted to take the time to make everything as crystal clear for you as possible. The last judge to rule on my case depended upon an unnamed woman who sat in on my hearing and said that I could go back to work as a marketing director or sales manager (in her humble opinion). The lawyer representing me at the time very gently squeezed my hand, and I bit my tongue. I could sense that anything else that I might have to add was simply deemed irrelevant at that point. And not too surprisingly, I was denied benefits.
But now? Now I want to tell you how very much my life has changed since the morning I woke up and could not stand, the morning on which I found that I could not walk the few feet to the bathroom. It was the most agonizing pain I have ever felt, and that’s saying something as I have given birth four times, once without any pain medication. I was told, after some tests, that I had a herniated disk. I was given medication, sent to a pain management specialist, and referred to physical therapy. In time, I was able to move again, but I was never again pain-free. Little things could set it off: stretching the wrong way, carrying something too heavy, lifting a stack of books.
You know those charts that doctors show you on which there are 10 circles with various expressions on their faces, with 1 being no pain and 10 being excruciating pain? Well, most people are fortunate enough to walk around in the one to two category. I am never below a 3, which I believe ranks as extreme discomfort. Most of the time—and please believe me when I say that I am not exaggerating—I exist at a 5. I have been very close to a ten, and on days on which I find that I cannot leave my bed, I hover around a 7 or 8.
Now let me pause. You are probably thinking to yourself, “This woman has a flair for the dramatic.”
Well, you wouldn’t be wrong about that; however, I am actually not dramatizing anything contained herein. I said that I was going to tell you how my so-called disability affects my quality of life, and that’s exactly what I’m doing.
Remember the woman who said that I could easily resume one of my former careers? Well, let’s take the Marketing Director position that I had. In that particular job, I routinely had to tote framed floor plans and site plans to empty sales offices in which I was then responsible for installing all sales materials. I also had to carry brochures (routinely 100 copies at a time) to and from sites. I carried large mailing to our distribution center. In other words, I carried around a lot more than the equivalent of a five-pound bag of flour.
The sales manager position? That’s just laughable. In that particular job I never sat down, well, make that almost never. I walked up and down three floors, moved full racks of clothes (not on wheels, mind you), hauled boxes filled with merchandise, and installed displays. In other words, lifting, carrying, bending, stretching, and a lot of walking.
My other positions? As a university instructor I regularly carried at least two carryalls filled with books and papers to grade. As an education specialist, I had to cart a laptop, a projector, catalogs, informational materials, an expandable banner, and various accoutrement to each informational session that I conducted, some of which were in Richmond. In this same position I routinely had to drive up and back to Washington D.C. in a day for marketing meetings. It was because of the demands of this particular position that I finally gave in and had the operation on my back, a decision that I will forever regret as ever since having that operation I have not lived one day without pain. The operation did not ease my pain; it increased it.
This little essay could actually be called “The Things She Carried.” Humor. Forgive me.
Back to the answer: Before I hurt my back, I could get by easily on five to seven hours of sleep. I used to awaken at 5 a.m., work out for at least half an hour, do a load of laundry, get ready for work, transport my kids to school, work all day, come home, fix dinner, maybe do more laundry, help with homework, and sometimes fit in a trip to the grocery store. I was actually quite strong for my size. At one time, I worked out five days a week and took a yoga class on Saturday mornings. I used to walk three miles in the morning. Every Saturday for years I would wake up and clean my entire house: scrub all of the floors, vacuum, change the linens, polish the furniture. My house was immaculate.
Some of my hobbies included hiking the Virginia foothills, toting around photographic equipment, and kayaking in the Back Bay. I loved to garden and do backyard birding. I used to collect paper samples from paper companies which I used to make personalized books for my family members. I used to change the oil in my car and regularly detail my vehicle inside and out. I have painted the inside and outside of my house, and I have hung wallpaper. I know how to change an electric socket or a light fixture, but I can no longer bend long enough to do so.
That was then.
Today, my life is more like this: I sleep at least 10 hours a day, that is if I’m not going through one of my insomnia bouts. I haven’t been to a gym in years. I haven’t taken a yoga class in almost a decade. I cannot walk distances or climb stairs. I cannot carry anything weighing more than ten pounds. I cannot kneel without great pain.
I can take care of my own hygiene, and for that I am very thankful. I can cook occasionally, but standing for hours to chop and process many dishes for a big meal is beyond my capabilities. I do laundry as long as someone else carries it to and from the washer and dryer. I cannot go grocery shopping by myself as I cannot load or unload the bags. I can sit at this computer for small stretches, but if I forget to get up regularly, I find my back frozen. My wrists hurt all of the time, but it’s not carpal tunnel; my pain doctor says that it’s directly related to the nerve bundles in my neck, which feel like large walnuts at any given time. My left shoulder has frozen twice.
Each month, or when I can afford it (not the same thing), I get at least 10-15 trigger point injections from my neck to my buttocks to try to loosen some of the muscles. I do not get massages as I cannot afford them. I have to take muscle relaxers all day and night just to exist.
By the way, it was taking these medications that gave my former employer cause for concern as I fell asleep at my desk from exhaustion one morning. They were concerned that I might fall asleep behind the wheel during the 26 mile commute to and from work. When I was referred to the proper channels about getting an accommodation at work for my condition, after review I was told that I would have to go out on disability. This was not something that I chose. If it had been up to me I would have probably tried to keep working for at least a few more years. Why? Because I loved having a career. Because not working at all after working since I was 15 has done quite a number on my mental health and self-esteem.
Along with the muscle relaxers and pain medication, I have to take antidepressants and anti-anxiety medicine. I take medicine to help me sleep. I take medicine for my cholesterol and blood sugar, both of which are high because I cannot exercise, even though I have given up sugar and altered my diet substantially. I take medicine for my thyroid and medicine for my GERD. And I haven’t even gotten to the migraines yet.
Ah yes, the migraines, which I have suffered since I was in my teens. I have been on so many medications for my migraines that I have truly lost count. The one medicine that did help caused my hair to fall out and really messed up my ability to think linearly or remember anything beyond my name. Now I take something to relieve the pain when it hits, but I can’t take it more than twice in one day, and I was told that after the first day, it’s really not effective, which is a bitch since my migraines last for days. The longest one lasted for weeks, no lie. They thought I might have a tumor. Luckily, it was just a migraine.
I have been somewhat fortunate in that my former employers all understood that extended exposure to overhead lighting triggers migraines, not that I didn’t catch grief for it. It is a little harder to explain to an employer who has never had a migraine why it’s impossible to look at a computer screen when in the midst of an episode. I suffer from what is called something akin to multi-headache syndrome: sinus headaches, stress headaches, and migraines. Oh, that pain level thing again as regards the headaches? Well today’s migraine was a solid 7. If it’s not the intensity, then it’s the frequency and/or longevity.
So how has all of this affected the quality of my life? How hasn’t it would be a more fitting question. My family members have all learned to keep their voices down when I have a headache. They all know that sometimes it is impossible for me to go somewhere as planned because of pain. If I go to a movie, I have to take a pillow so as to sit comfortably for a few hours. I can’t eat certain foods that trigger migraines. And my health insurance and medication costs eat up a big chunk of the family budget.
How has it affected me? I am a completely different woman, sometimes, a woman I don’t know, a woman with weaknesses she never had, a woman with limitations she never knew, a woman without a career after a lifetime of hard work, a woman with almost no retirement savings and small prospects for the future. I used to have an active social life, went to museum openings, symphonies, concerts; now my family wishes that I would leave the house more.
How has it affected me? I’m not entirely sure that I can answer this question to your satisfaction. You see, you don’t know me, and I don’t know you. You don’t know the person I was nor the person I have become. The person I was would have never chosen to answer this questionnaire in this manner, too embarrassing. That person was self-assured, successful, and smart. She thrived on stress, loved to learn new things, and welcomed challenges. This person? I’m not even sure that I would want to know her.
2 thoughts on “The things you asked me but didn’t really want to know . . .”
It’s funny sometimes, how bureaucracy has a blank face turned towards our deepest pain. While communication makes us the “head animal” on the planet, it often fails. Is the world too big for us to hear each other’s pain?
Truthfully? I don’t think that most people walking around give a rat’s *ss about other people’s pain. The world, society, civilization has become so egocentric that the ideas of empathy and sympathy seem to be taking a backseat getting ahead at any cost, ignoring they neighbor, and turning a blind eye to the homeless person on the street. My cynicism is showing, I’m afraid.