Applying for disability benefits is roughly equivalent to applying for a death certificate. Each requires a demand of Habeus Corpus—produce the body—and for roughly the same reasons. The coroner must have a body to view to make sure of its deadness. The insurance company requires viewing the body to determine which parts of it are keeping the applicant from working. After each completes his examination a bill of particulars is issued, a death certificate from the coroner declaring the deceased dead and a check from the insurance company declaring a part of or all of the applicant’s work life dead. Declaring a body’s death is easy, there’s no gray area. Declaring disability, however, is not a black or white decision. Disability, like art, is in the eye of the beholder. And, much like the judge who said he knew pornography when he saw it, I’m confident that the insurance company will recognize disability when they see it.

So I hope.

After obtaining the necessary forms, I filled some out, my doctors filled out others and all were submitted to the insurance company. Next, someone at the company reviewed the material and decided that I was sick and unemployed enough to be a potential recipient of benefits. Before making the final determination, however, the company requires that one of their disability representatives visit me at home to go over all the information in my claim. They demand habeas corpus. In essence, they require a viewing of my body so they can decide what to do with my application. A representative called today and made an appointment to ‘view’ me later this week.

To be chronically ill and in constant, severe pain, is to live inside a whirling vortex of anxieties that don’t bedevil the healthy. This upcoming interview is a good example; the appointment unnerves me. After seeing myself clearly in the mirror a month ago, I went on a determined campaign to increase my weight. Since then, I have gained seven or eight pounds, a triumph, as I rarely feel hungry. I no longer look as cadaverous as I did weeks ago and this should be a good thing. But in my mind, it presents a problem:  If I’m to be viewed and interviewed, I’d like, at least, to look sick.

But I don’t look sick. At all. This is common problem for people who suffer from painful conditions. The ravages of pain aren’t necessarily visible. Some broken bones are visible and rheumatoid arthritis with its deformed joints can be seen, but other forms of arthritis, such as osteoarthritis, like I have, are mostly invisible. The fibromyalgia that causes severe pain in my back muscles is invisible. The tendinitis is too. The slippage of one vertebra over another in my lower spine and the sciatic pain it causes is invisible. Symptoms of the Behcet’s disease aren’t visible except for mouth and genital sores and rashes on my back and chest. The blindness in my left eye is only evident when, to my embarrassment, I run into furniture or step on dogs or small children. These diseases and conditions can’t be seen in an interview. Habeas corpus may not help me.

The only thing I may have going for me visibly is the lack of sleep caused by the constant pain. If I go several nights without much sleep, I begin to look drawn and exhausted. I imagine my stress level will increase as this interview draws near and the added stress will give me a good reason not to sleep. Chances are I’ll look tired, with lovely dark circles under my eyes.  I don’t believe that my health problems are capable of speaking for themselves. I wish that I could offer visible proof.

When casual acquaintances learn that I’m sick and unemployed, they often look at me with incredulity. The less socially adept of these inevitably blurt out some form of the following: “Wow, I would never have guessed. You’re lucky, you certainly don’t look ill.”  It immediately angers me and puts me on the defensive. However, I push the feelings aside and reply briefly with, “Thanks for the compliment, but I really am quite ill.” But in the mossy depths of my own mind, a little voice hisses, “They’re right, you don’t look sick. You’re not as sick as you think. You’re just looking for an excuse to not work, you exaggerating slacker!” I wrestle with this voice all too frequently and I don’t need others to trigger it.

I try not to indulge the anger or defensiveness when this happens. Sometimes I try a little education and tell the person that chronic pain is often invisible. The only way they could see evidence of it with me is if I used my black foam neck brace, my hospital gray arm slings or my suave cocobolo cane straight from a tropical rain forest. I don’t think these people are being malicious, I think they’re simply uneducated about chronic pain. But I’d still like to go upside their heads with my cane. And this only because what they say adds power to the hissing voice insinuating my fraudulence. Instead of brandishing my cane, I’ve learned to avoid these people.

I’m completely aware that I have matched the insurance agent with the voice in my head. But it is no less dangerous for its transparency. I have to separate this voice from the agent so that I don’t appear defensive, shifty and ambivalent. If I don’t, I fear I’ll look fraudulent, like I’m trying to put something over on my insurance company, making the representative logically suspicious and less inclined to take me at face value.

When I tell Judie about the voice, she says that I should just be myself and let the chips fall where they may. She has no worry about my eligibility for benefits. Now, as soon as I hear this voice, I think of Judie and her complete faith in my crummy body and her conviction that the insurance company will agree with her. I long to share the confidence of her certainty; this niggling self-doubt drives me nuts.

This voice has another affect on me. I often think about the news stories that we’ve all seen of some tattooed hulking slug who has been receiving disability benefits from Workman’s Comp secretly filmed playing football in the park with his friends or carrying a couch out of his house and manhandling it into the bed of a pick up truck. He’s been on disability for years from a back injury that ostensibly happened on his job. The news inevitably shows him doing the perp walk and the story ends with the slob ordered to repay the benefits, fined, disgraced and sent to prison for fraud. A moral tale not lost on me. I’m sure I’ll be worried about a hidden camera filming me doing something that the disabled ought not be able to do.

Today is the day of my interview. Much to my dismay, I slept well the last two nights so I don’t look tired and exhausted. No, I look healthy and rested, not at all how I wanted to look during this interview. Again, Judie urges me to calm down and just be myself. Something I find hard to do since much of our immediate financial future turns on how this insurance agent sees me.

I’m upstairs in the bathroom when the doorbell rings at10 a.m.Judie answers it before I come down. As I descend the stairs, I get my first glimpse of this guy. He’s a bit taller than me, maybe a couple of inches over six feet, with close-cropped brown hair. He has the shape of a serious body builder—broad shoulders, impressive chest, and from under his open blue sport coat, I can see he has a flat belly and narrow waist. His arms, even concealed by his sport coat, look twice the size of mine. Jesus. Just my luck, he looks like a marine drill sergeant who hasn’t kicked some ass in weeks and is looking for an excuse to rumble.

As I reach the main floor where he stands with Judie, I introduce myself and shake his hand. His grip is strong but not painful and I pick up a hit of Obsession cologne. He smiles professionally, an automatic smile with little hint of warmth. His name, which I forgot from his original phone call, is Robert Dunne, my first glimmer of hope. He must, like me, be of Irish decent. If he is, that’s all we’d have in common, because he looks as if he’s never been sick a day in his life. He exudes an aura of healthiness and looks ten years younger than me. He has a certain military charisma; his physicality makes the room feel smaller.

How can a healthy man in his mid-thirties know anything about physical suffering and disability? I cannot imagine how he’ll be able to relate to me. The only way a man who looks like this can know of suffering is by proxy, by rubbing up against the pain and suffering of people like me. I wonder if regularly dealing with sick people is enough to stimulate empathy in him or, if professionally, he has to distance himself from the misery that clamors for his sympathy.

Once we sit down at the dining table, he tucks his slender gold tie into his white shirt between two buttons half way up his chest. He looks like he’s preparing himself for battle. Robert pulls from a black leather brief case a tan spiral notebook and a sheaf of printed forms, forms I imagine that he’ll expend time and effort to fill out the contours of my life.

My breathing is shallow so I consciously take three slow, deep breaths and smile at Judie. I tell myself why Robert is here and that no matter how friendly and soliciting he might be, that he is, like a reporter, here to get a story. A story that I think the insurance company would like to use to disqualify me. I remind myself of what Judie has counseled in the last several days, to answer his questions and nothing more. I have a natural tendency to tell too much, to be too trusting. I won’t, through anxiety, become voluble and say things that might harm me. But maybe this caution will be pointless. Maybe he loves to give the company’s money away and is looking for just enough proof that I deserve the money so he can approve my application. But even if he’s here to help me get the benefits, I tell myself to be polite and brief.

He starts out by asking me identifying information and then quickly goes into my history—education, where I’ve lived, the kinds of work I have done. I answer in short friendly sentences. He writes things down on the forms and in his notebook. The opening phase feels almost like a polite, but thorough job interview. It also feels like Robert is an investigator who is trying to make me comfortable with answering relatively routine questions that will lull me into talking too much later when the answers really matter.

After about fifteen minutes of this, Robert turns to my health history, with special emphasis on when symptoms first began to appear, the course of the illnesses, the medical treatment that I obtained and how the illnesses have affected my life, especially my work life. This takes up the better part of the interview since my health history is long and complicated with many false diagnoses along the way.

Judie has to help through much of this portion because my memory is hazy about dates and sequences. As she tells Robert about dates and sequences her hands flutter in front of her like caged sparrows. This is not like her. Unlike me, Judie doesn’t talk with her hands. For the first time I can see the strain and anxiety in her eyes.

The Duragesic patches that I have been using in the last few years affect my memory. I wear the patch on my upper arm. The patches slowly dispense a synthetic narcotic to help control the pain. It works well but it screws with my memory, especially short-term memory. Makes me feel like I have Alzheimer’s so I have to rely on Judie’s memory. I think that my obvious memory trouble, even though caused by medicine, can’t hurt my chances. I’m feeling good about how the interview is going.

“Tell me about a typical day,” Robert says, shifting focus.

This shift upends me for a moment as I think the only “disabled” answer is to say something like I spend a good part of the day in bed nursing my wounds; that I toddle around our home with my walker and talk to my dead relatives; and that I wear the same clothes every day and forget to change my underwear. But that’s not the case because I do certain things throughout the day. The only difference between me and the healthy is the price I have to pay in pain and exhaustion for the things I can do. Being in chronic pain is to live in the lonely precincts of exhaustion.

After a moments hesitation, I say, “After dropping Russell off at preschool I usually go to the grocery store to get that night’s dinner, go home and put the groceries away, and depending on how bad the pain is, I’ll take a nap or try to read. Because of the relentless pain and sleepless nights I often take naps during the day. At noon, I pick up Russell and either bring him home, drop him for a play date, or take him down to the park by the river where I sit on a bench while he plays on the Jungle Gym with other kids.   Later, we go home and hang out. If I’m up to it, I make dinner, if not we wait for Judie. In the evening, we watch television then put Russell to bed. Shortly after that, we go to bed.”

It is hard for me to sit at the table, with Judie and Robert, on this relatively hard dining room chair. My back and hips are inflamed making me feel weary. I hope I look like it. I get up from the table and stretch out my back and then sit down again.

“Do you take vacations?” Robert asks, picking up another form from his pile.

The question brings me up short. Am I more disabled if we don’t take vacations, I wonder? Maybe so, but I tell him the truth anyway.

“We have traveled by air back to Chicago once but I try not to travel that way as at least fifty percent of long flights end up with me in a far off hospital with kidney stones. My doctor doesn’t know why this happens but he says many of his patients experience the same thing. It makes flying and vacations miserable. Not to mention that flying on cramped planes is exceedingly difficult for me.”

Robert watches me thoughtfully as I talk. He’s looking at me like he’s seeing me for the first time. I have no way to judge how he’s feeling about me.

I continue. “Last year we drove up to the Catskills and rented a cabin for a few days. It was nice to get away, but like at home, what I can do is severely limited by the pain. For the most part, I stayed inside the cabin and watched the Olympics on TV. I love watching athletes in action. They can do so much that I can’t do. I like identifying with them. If I concentrate on the sports I can, for a few minutes at a time, not be aware of my body. But the reality is that there is no vacation from the pain unless I’m in the hospital on morphine. I love morphine, it really knocks the pain on its ass.”

Robert writes something down in his spiral notebook and then asks, “May I look at your appointment book?”

I look at him as if he’s asked to see my gold bullion. “My appointment book?”

“You do have one, don’t you?”

I nod my head. “It may take me a few minutes to scare it up. I’ll be right back.”

Before getting up, I hesitate for a few moments, as if I’m trying to remember where it is. This seems like a strange request of someone who isn’t working. But I quickly realize he is trying to see if I’m making appointments with clients that I’m not reporting. In essence, he is trying to trip me up. I feel offended, and at the same moment, the small voice in my head whispers, “Fraud, he knows you’re a fraud.” I dismiss the thought and excuse myself to go hunt up my appointment book. I don’t hide how painful it is for me to rise up from the table.

I look first upstairs on the nightstand next to the bed but it isn’t there. I come down stairs on my way to the lower level and say to Robert and Judie that I’m unsure where it is. The longer I look for it, the more I feel like a fraud who is trying to cover his tracks. I go downstairs to the third level and rummage through all the papers and poems that litter my desk. Finally, I look in my filing cabinet and find it. It’s a small, black Week-at-a-Glance appointment book. I bring it back upstairs and hand it to Robert then sit down and watch anxiously while he goes through it.

He goes through every page and asks me about each entry for an appointment. Almost all of them are for the various doctors I see as well as appointments with the physical therapist with whom I’ve been working, and Russell’s swim classes and play dates. On several pages are lists for the grocery store and reminders to call in prescriptions for medicine that I need to refill. As he begins to recognize the names of my appointments because of their repetition, he stops asking me who they are and silently leafs through the remaining pages. The more he flips through the pages, the faster he goes.

For the first time in the interview, I feel naked and humiliated. All the earlier questions made me feel exposed, but my appointment book feels like an extension of me. It feels invasive to have someone look into my book to judge what is there. I’m silently enraged. I have to exert iron control not to growl, “If this is what I’ve got to do to get benefits, you can stuff my calendar up your suspicious ass and get the fuck out of my home.”

But I remain silent as he quietly finishes. Having someone besides me decide my future is almost more than I can bear. If Judie wasn’t sitting with us, I’m not sure I would keep my hostile feelings to myself. But not wanting to disappoint her, I keep outwardly calm. But I’m sure she can sense how outraged I feel, how tense I am.

Robert closes my book and lays it down on the table between us. He smiles sheepishly at me as if he’s as embarrassed about going through my book as I am angry. Pushing the book across the table to me, he says, “Well, that’s just about it. Unless there’s anything you’d like to add, I’ve covered all the bases and I’m finished.”

The sudden end of this interview takes me by surprise. I had expected it to go longer.

Judie looks at me with questioning eyes. I have nothing to say and shrug my shoulders.

She turns to Robert and asks, “How good do you think Mark’s chances are for getting benefits?”

Robert runs both hands through his hair, shuffles the papers in front of him. He’s stalling, looking for a way to sidestep the truth, I think.

“I really can’t say,” he says in a suddenly friendly tone and his first warm smile. “I’m not the one who looks at all the information and makes the decision,” he says looking first at Judie then at me. “But I can say that everything I’ve heard and seen today is consistent with an applicant getting benefits. I know I’m going out on a limb here, but I don’t see any reason to deny the claim. The main office will decide if all this information is consistent with being disabled then decide how disabled you are. Say for instance 50% or a 100%.” He reaches out and pats me on the upper arm.

A wave of relief rolls through Judie, her shoulders drop a few inches as if she’s dropped a heavy weight. The rage drains quickly away from me and I feel numb and tired. For the first time, I feel that maybe something good will come of all this pain and misery. Maybe the financial burden that Judie shoulders will be lifted.

“But,” Robert adds quickly, stepping back a bit, “I can’t promise anything. All I can say, Mark, is that you sure have been sick and that I’m sorry for your troubles.”

This makes me laugh. Robert looks offended.

“No, no,” I say, reaching out and patting his arm, “I’m not laughing at you, I’m just happy to hear you say you’re sorry for my troubles. Are your parents Irish?”

“Yes,” he replies, his smile reappearing. “How did you know?”

“Well there’s your last name, and I’ve only heard the Irish be sorry for someone’s troubles.”

Robert laughs and for the first time in this whole, humiliating process I feel that he may be on my side.

He stands up still smiling and places the forms and his spiral notebook back into his brief case. He pulls his tie out from his shirt and we walk him to the front door. He turns around to us and says that we should hear about the company’s decision within two weeks.

And just like that, the ordeal is over.

After saying goodbye, Judie and I shut the door and walk through the dining room and down the two steps into our living room where we both collapse onto the couch next to each other.

“That went well,” Judie says, her eyes beaming.

“Yeah,” I say flatly, giving into my exhaustion, “so do I. Maybe our bills will disappear.”

“Yes,” she says patting my left leg with her warm hand. “You know, sweetie, it’s one thing to live through all your health problems but it’s very different listening to you talk about it from beginning to end. You’ve put up with a lot. We’ve put up with a lot and I’m just sure they’re going to find you eligible,” she says laying her head on my right shoulder.

Although I’m not as sure as Judie, I think I’ll at least be eligible for something and anything would help. I press my cheek to the top of her head letting the tension ebb away.

“I’m glad you were here.”

“Me too,” she says.

“If you hadn’t been here I think I might have blown up at him.”

“I could tell,” she says patting my leg again. “I’m glad I was here, too, because we’re in this together. It’s our problem.”

“Yes,” I say and I know it’s true.

“We spoke for your body today and I’m sure your body was heard.”

“I hope.”

Minutes pass and we sit silently, neither of us speaking the word. A new word that has entered our lives, a word that I have feared and hated. A word that I never thought would apply to me. I won’t simply be sick and temporarily out of work. Not anymore.

The word rises like the Phoenix from the embers of my broken body, from Habeas Corpus.

The new word declaring my new identity will come through the mail—

Mark Maginn: Disabled.


About left0089

Columnist at American News Report. Pain care activist. Poet, memoirist.
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