This hot mess won’t be edited until later this weekend; it was getting too long as it was so I had to take a hacksaw to some of it. Also: I slept last night! (And was so excited about it today that I bookmarked a Michael Landon telefilm to watch in celebration. One day, I’ll write more about my secret shameful love of “Highway to Heaven.”)
From start to (almost) finish, the SSDI application and appeals process has been inscrutable to me. It’s less like filing an insurance claim than going up against the house in a high-stakes game of roulette, which is an uncomfortable realization to belatedly arrive at after paying into the system for so long with potentially unrealistic expectations of what it might offer in return. Of course, not everyone pays into it — as I’ve been reminded more than once, starting with my initial call to the lawyer’s office, when the intake coordinator paused after hearing I’d spent many years working for a small family business.
“You’re sure your employer paid payroll taxes the whole time?” he prodded. “It happens a lot with small businesses, family businesses. We talk to people who trusted their parents, their spouse, their uncle, and the taxes weren’t paid and nothing’s there to collect.”
It was one of the two most financially calamitous mistakes I witnessed over and over again in the ma-and-pa-shop industry in which I was raised; the other was not purchasing health insurance.* Almost miraculously, given their general financial ineptitude, my parents avoided those pitfalls; the whims of fate and the curse of troubled genetics — my paternal grandfather’s premature death, Papa’s early disability, my maiden in-patient hospitalization costing as much or more than my parents’ first house — menaced them enough at impressionable ages that they did things by the book.
The next biggest part of an SSDI case, after establishing eligibility, is documentation. On the surface, it’s a sensible mechanism for the prevention of fraud, but it can get a little strange in practice. Even if your claim is patently obvious — “I can’t do physical work because I have no hands” — one or more physicians must have observed and reported this and any supportive evidence in your medical records; additionally, and somewhat curiously, your continued lack of hands and the limitations it causes might also require ongoing documentation.
One of my cousins, Brandon, has never walked independently; he was born with severe cerebral palsy. Despite undergoing several painful corrective surgeries and periods of grueling rehabilitation as a child, he has virtually no use of his legs and very limited use of his arms. Brandon’s 40 years old now and will always need help with tasks most of us take for granted during the decades between our earliest and latest years, like using the bathroom without assistance, cutting food and buttering bread, pouring his own drinks, and changing a light bulb. He can’t live independently or drive. He was repeatedly denied Social Security benefits and my aunt had to fight for his coverage.**
Why would a system so skeptical of Brandon be any kinder to me? During our call on Tuesday, after grimly revealing our assigned judge was “the toughest we could’ve drawn,” the lawyer said she had the last five years of my medical records in front of her; due to some recent law or another, those are the only relevant years. “They want documentation, well, you’ve got documentation. Thousands of pages of it,” she laughed. But how much will the judge actually read? How much will they understand? Judges and adjudicators who review bogus disability claims all the time might look at my record and think “Uh-huh, sure, she has all of those conditions,” while a physician would glance at the same list and know most of it’s a nettlesome extension of Crohn’s.
Most of the lawyer’s run-through was devoted to practice questions I’ve already answered a half-dozen times in previous rounds of this Who Wants to Be a Societal Burden? quiz show whose finale is fast approaching: “What do you do in the average day? For how many minutes can you hold your arms above your head? Is your condition expected to improve within the next 12 months?” It turned out I didn’t require much coaching; she was pleased my answers were consistent with my records and that I hadn’t attempted an Oscar-worthy performance. My contention, after all, isn’t that I’m helpless 24/7, 365 days a year; it’s that I have good days and bad days, and good hours and bad hours, and the dopamine fluctuations and degenerative nature of PD make full-time work a distant dream.
The rest of our conversation was devoted to courthouse directions (where to park, where to wait); pat-down and bag-search reminders; and instructions to wear whatever I normally wear on a weekday. “You want to dress up, look professional, do your hair, look your best, right?” the lawyer said. “It’s a big day, you want to make a good impression! Don’t. The judge wants insight into your daily life. If you don’t usually wash or comb your hair, don’t do it for us. If you typically wear sweatpants, wear sweatpants. If you usually wear pants and a sweater this time of year, stick with that.” It’s sensible, I won’t quibble with that, but it was also hard not to interpret it as “They expect you to be stupid and slovenly. Lean into it.”^
“Am I allowed to read while we wait or do they expect me to be illiterate?” I wanted to ask. Before we hung up she reminded me to ask the MDS to fill out a form about my limitations at the next day’s Botox appointment, then contact her case coordinator afterward so she could request the exam notes. I did as I was told but felt uneasy about it; the MDS said her office would scan the form and it would be filled out and returned by So-and-So, who I’ve never met. The questions were so specific that I doubted this person would know how to answer them — the doctor and I tend to discuss matters more important than how long I can stand on an average day — but the MDS reiterated her support for the claim and said it wouldn’t be a problem.^^
Crankenstein was present for part of the call and asked whether she’ll need to answer questions or prepare a statement; the lawyer said no, she won’t be allowed in the room. She’s still sore about that slight, though I think her indignation’s more professional than spousal — her input is usually valued in such matters, except on special occasions like the “stupid f*cking trick” incident. Interestingly, the lawyer told her “You should dress professionally,” which was probably another blow to poor Crankenstein, who prefers loitering in sweatpants and hoodies on her days off.
* “I Wish She’d Let Me Die” Guy was a textbook example of this. A middle-aged chain-smoking workaholic who generally neglected his health, he had a massive heart attack one day while mowing his lawn. Had he been found just a few minutes later, he was told, he wouldn’t have made it. Instead, he had a lengthy and expensive hospitalization and rehabilitation. No one was going to make him buy “Obamacare,” as men like him always sneeringly called it, so he wasn’t insured, and he said he’d never be able to retire now; the heart attack financially ruined him. “I wish she’d let me die,” he said of his wife, who’d leapt into action to save his life. (What really happens in these cases is guys like him don’t pay their bills for quite some time, or their sister-in-law starts a GoFundMe; then they eventually offer debt collectors token amounts that barely cover the cost of their ice chips and hospital socks. It’s those of us with insurance, who pay out the ass for premiums and procedures, that subsidize their care while they loudly parrot Fox News talking points about liberals and racial minorities being economic leeches. It should go without saying that his type also rants and raves about those dastardly Democrats once they see how small their monthly Social Security payments will be; they never blame themselves for being tax cheats.)
** She was a Tupperware saleswoman whose then-husband more or less abandoned the family because he couldn’t deal with Brandon’s disabilities; she couldn’t have afforded his wheelchairs or necessary home and vehicular accessibility adaptations without government assistance and Variety Club grants. Her ex was racked with guilt about Brandon’s plight and she was, too, but she didn’t have the luxury of abandoning her parental responsibilities. We were young and didn’t discuss things on this level then, but Brandon and I had the parental angst thing in common; my parents struggled with my health and openly bickered about who “caused” my IBD. None of our parents caused our conditions, which we knew better than they did.
^ I do, in fact, wash and comb my hair, but you’ll find concessions to Parkinson’s in how I dress most days: ripstop elastic-band pants from L.L. Bean instead of jeans, slip-on shoes, a watch that can call for help if I fall. (L.L. Bean’s shirt quality has declined in recent years but their short-person pants tend to actually be short, while other brands peddle ‘petite’ or ‘short’ pants with legs that still drag the ground.)
^^ As usual, we only had a few minutes to rehash notable neurologic events of the past three months: the cognitive testing results; frequent face and foot dystonia; sleep-shouting obscenities (about which she laughed and said “If it starts happening more often and annoys [Crankenstein], there’s something we can try…”); overnight sleeplessness and excessive daytime sleepiness. She told me to add an extended release carbidopa/levodopa to my first dose of the day and gave instructions on what to tweak if that’s too much. Then the injections commenced.