“How many legs you got there?” I was stunned by the question the security guard greeted me with after I used my crutches to get up the ramp into the clinic of my new[est] doctor’s office. I was too tired from the act of moving my broken body from my apartment, down the stairs from my second-floor apartment, and, hesitant against arguing with an authority figure, I just stuttered, stammered, and ignored the ignorant question.
I’m writing this on the 31st anniversary of the Americans with Disabilities Act signing.
The security guard met me on the way out and apologized. I told the guard that we, disabled people, are treated like shit. Regardless of how comedic a joke like that might seem, jokes like that tend to do a lot more harm than they do good, and they’re really only funny to the person saying the joke. Disabled people are treated like shit more than words like this, probably because there’s a stigma in the United States especially against people that aren’t working their absolute hardest, but I worked harder getting to that office than that guard did, and I did fill out a survey to explain to the office that they need to provide empathy training for their guards.
Other than that, the doctor’s appointment turned out well with some caveats.
The primary caveat is that the original diagnosis that the doctor thought was going on over the phone was not accurate. That’s fine. The doctor, and actually two doctors as my new primary care physician/PCP was joined by a, I guess, training doctor? Someone that was learning the ropes particular to cases like mine. My PCP briefly explained the situation over the phone, and since the assistant-PCP was polite enough, I decided against recording the conversation. The office has its recording policy plastered on its walls: it’s OK to record, so long as all parties consent. That’s good to know when/if? I go back into the office. I have a follow-up with my PCP in four days, after which the third PCP I’ve seen will do research on my case.
The other caveat regards the level of research and potential misinformation.
My concern is that because I’ve been to so many doctors, that someone or another will write negative notes about me. My PCP had gathered many notes already, and when showing the paperwork to me, had almost a triumphant body motion – maybe because the number of pages accumulated. Maybe my mind took it as a negative, like, “hah, we’ve got you!” but really that negativity is only because of the amount of disappointment I’ve received from the American Healthcare System over the past 15+ months. I feel like everything in my life has been stolen from me by the many doctors I’ve seen. Three pages of doctor’s visits, physical therapy, and other attempts to restore my health.
I suppose I’m used to expecting the worst when I’m dealing with any healthcare now.
The appointment itself involved my PCP and the assistant doing a series of physical checks, evoking a major amount of pain, but unlike other doctors I’ve seen in the past, this was less bullying [like Pain Doctor #1 and the forgotten #2 since that doctor did so little besides forcing me through aerobics then tell me I should go to Aqua Therapy] and more like I was being like a human being. Weird, I know. I’ve had a terrible journey through the American Healthcare System that no patient should really have dealt with. If my case was too difficult, rather than dumping me off at the door of another doctor, I should have been treated like how IT helpdesk management train their helpdesk employees to do warm transfers and handle customers with respect and dignity.
I was even wheelchaired out to my car, instead of being discharged and left alone.
What kind of crimes have I committed to deserve the luxury of being treated like a human being in the American Healthcare System? The assistant, at one point, was commenting on how involved my case was, and I said that “not every patient is a sore throat or a runny nose,” and the assistant replied by saying that all patients should be treated. I’m not sure what happened with my case, and through talking with other friends of mine in healthcare systems in the US and Canada, I am left to believe that if a case is easy, typically, doctors can’t really screw it up too badly. It’s the same as resetting the password for a customer where everything lines up well on the first shot – the customer verifies their identity, the helpdesk employee resets the password, and confirms the customer gets logged in. Easy.
Or, do we – complex patient care cases – only complain as we do when it goes wrong?
If my case were fairly complicated, but this wasn’t the third PCP I’ve had to start from scratch regarding how to handle my case, then my first PCP would have continued to coordinate everything related to my case. Instead, my first PCP and that PCP’s office effectively created so much friction that it was easier for me to move onto my second PCP, whose office did the same thing. My second PCP’s office serves as another point of concern – I argued with my second PCP’s office admin. I’m sure that’s in my patient file somewhere that I responded to the admin’s rudeness with rudeness of my own. I could be seen as a problem patient as a result, so this might be a source of anxiety for me – what if I’m thrown yet again to yet another office?
I have one bit of evidence that proves that maybe I can believe this newest PCP…
My third PCP and the assistant conferred a few times away from me, where I could barely hear the PCP say that my case was confusing, before I was discharged from the office that day. My PCP asked me if we could talk again, via phone, on Friday. I looked at my calendar, agreed, and we talked about how my PCP would review the case in more detail before Friday. I accepted that, sure, either there will be some progress or no progress. Was I was mentally preparing myself to get along with the rest of my day, my PCP knocked on the door, entered, and asked me two or three more diagnostic questions related to my health. These were seemingly random questions, but I see what happened now, especially with a few hours of hindsight:
After over 20 doctors taking my case, this is the first doctor interested in my case.
This might be the equivalent of giving a complicated puzzle to someone interested in solving puzzles. When I worked in healthcare IT what feels like so many lifetimes ago, I would juggle easy and difficult break/fix tickets for the hospital I worked at, and the difficult ones would be complex problems to resolve to help the hospital. I was young in my career and life. I let those complex situations riddle my brain with thoughts, instead of, as I’ve now grown – and if I ever return to the workforce proper – will balance thoughts with other thoughts. I’m into writing now, broadcasting livestreams of videogames or art, podcasting, and I have myriad other hobbies. If my mind becomes too obsessed with one, I switch gears. I do this to avoid spending many hours a day focusing my way through one problem. When I’m on the clock, or the problem needs fixing, I’m on it – but if I have to wait for something, or it’s not a problem I can fix in the moment, I shift my focus over to something else.
That I received those three additional questions was a good sign.
Will I get the treatment I need on Friday? When you read this essay after September 08 2021, that Friday, July 30 2021 will have long past. Good or bad, there’s not much I can do in this moment to fast-forward time to get to Friday morning’s phone call. I can remain in that sort of mid-ground between pessimistic and optimistic, though, in terms of how my care will go. Let’s say that I get the treatment I need, and maybe by this essay’s publication, I will have begun or am part-way through the route to recovery. Wouldn’t that be fantastic? Being able to change my clothes daily, bathe myself regularly, buy groceries at the supermarket, and even leisurely enjoying reality have all been elusive activities for me. It’s painful for me to even do much more than sitting here for hours at a time – and even sitting here is like sitting on a dagger. If I sit at an acceptable angle, carefully enough, then maybe, as I’ve trained my brain to do, I can focus through the pain to do things like write essays like this, broadcast, or do other things.
What if we actually figure out what’s wrong?
If there’s any gift about having experienced chronic pain since April 2020, it’s that my patience for fools is significantly lowered than before. While I was talking with that security guard at my car, who was waiting out there as the two nurses wheeled me outside as though I were the honored guest at a hotel, I was thinking about the what-ifs. What if I talked to this guard years ago? I used to enjoy talking to everyone, at all levels of my employment history. Many guards work solitary jobs and enjoy friendly conversation. I’ve befriended a few. One guard invited me to hang out while going on rounds, so we’d talk as the guard went through security check-points, and we became proximal friends. We’ve drifted apart now, but we were friendly, at least. I wouldn’t be friends with this guard whose first reaction to seeing a person with disabilities, on the 31st anniversary of an act designed to prevent the marginalization of people living with disabilities… was to not say hello, but to make a joke at me.
To not make a joke with me, but to make a joke at me.
The security guard’s apology seemed sincere, but, there were hints of privilege within the apology. This was not a person who understood that jokes can be offensive, but had learned only through a lifetime of privilege that jokes can be offensive, and throughout this lifetime had learned the importance of a well-posited apology. The apology wasn’t about learning the wrongs of the joke and self-betterment. When I told the guard that disabled people are treated like shit, the guard’s response was not about trying to learn. Rather, the guard justified the joke by sharing information about being disabled as well. Yes, being “30% disabled” is a good way to empathize with someone that cannot walk without mobility aids. I’m 100% disabled.
Even if we – the guard and I – are both be disabled, there’s a 70% difference.
My friends that deal with chronic pain and I might joke about our disabilities in ways where we can empathize in our shared experiences. This is an important way to relieve pressure from stressful situations. We might even be comfortable enough to share these commiserating in-jokes outwardly. For someone to start off a conversation like that doesn’t treat people with respect. Why that person is a security guard is clear – see who is potentially aggressive and get that person out as quickly as possible. Which was funny, because here is an older person that wears the clothing of a guard, with the disability story being this: the guard pursued a person that had committed a crime, became injured, and now must live with this disability. The guard, true to form, had wanted to know what my disability was. Why, doing this can build empathy, right? I told the guard what I’ve told everyone throughout this entire process: We’re trying to figure out what the problem is to then fix the problem.
At least my problem isn’t being an asshole unnecessarily.
|Quotes: Quotes cited in-line.|
|Sources: My fitness experiences.
– This week’s weight: 228.0
– Last week’s weight: 221.5
– Weight Difference: Quite a big jump, huh? I’ve been eating better
– Difference between writing and editing for publication: I reported the security guard up to the clinic’s director. We chatted a bit about the situation. The next time I saw the security guard, as I waited in the lobby before my sacroiliac joint injections, the security guard may have either waited for me to pass or otherwise we did not cross paths, and it was nice. I’m glad the guard was not fired or relocated, but, I’m glad I didn’t have to talk to the guard. As for my health, my health has improved since the injections, but I still have a long way to go before I am ever in any working condition. Also, I know that a joke like this is an old-school joke, but I feel like noting that jokes usually should be consensual and funny.
|Inspirations: Writing about my day and my life.|
|Related: Past weekly column entries. Sober Living essays and Tripping On [The American Healthcare System] chapters.|
|Written On: 2021 July 26-27 [11:13pm to 12:12am, where I reached about 1,600 words before midnight]|
|Last Edited: 2021 July 27 [First draft; final draft for the Internet.]|