Eventually, all at once

Since a lot of people have been asking what’s happened over the past couple weeks, allow this to be a brief rundown on the current goings-on. In short, because I’ve not been having the best experience at the local hospital, I’ve decided to get a second opinion at the Cleveland Clinic.

Thanks to a friend who, unbeknownst to me, had a strangely similar ailment, they pointed me to a doctor at Cleveland Clinic. Also unbeknownst to me, Cleveland Clinic is, as a different friend put it, “the Princeton of hospitals.” And while I never had the grades or funds to get into an Ivy League school, I’m glad my body is somehow failing upwards.

Despite the fact that Cleveland Clinic—and the doctor I’m seeing—both seem very good, I’m pessimistic that anything comes of this. After a full month of being kicked from specialist to specialist without any progress, why should I believe this trip would be any different? Obviously, I’m approaching every appointment with the hope that I’ll walk away with some kind of treatment plan, but, up to this point, I’ve only been told that there’s nothing to be done and to come back later. The thought of having to drive six hours to Cleveland, only to have the same thing happen again, and then drive six hours back, is harrowing enough that I’ve had to set that as my baseline expectation. Because if I was going out there thinking that it would be the solution I’ve been hoping for, only for it to be business as usual, that would be too much for me to handle.

This is normally where I’d insert a joke to undercut the sheer melodrama of that preceding paragraph, but I’ve really got nothing here. I’m just tired.

Last week, I had to be to the hospital at 6:30 in the morning, which is becoming a part of my weekly routine it seems. I went for another MRI, was handed another costly bill, and then met with another doctor who saw me for, roughly, five minutes. When he left it at, “I’ll see you next year and we’ll go from there,” I just sat in silence. I wasn’t sad or scared or anything like that, I was just angry. I’ve been fighting tooth and nail to be taken seriously, only to be brushed off at every pass. And while I’m happy to be cordial and friendly up top, I can only extend that for so long. He then asked, “Does that plan sound okay to you?” with the faintest hint of sympathy, but with the more genuine hope that I was going to say “yes” and let him feel better about this whole interaction. He wanted me to tell him that his decision to do nothing satisfied me and let him off the hook. Instead, I just said, “It sounds like it doesn’t really matter if it’s okay with me or not.” He sat up, shook my hand, and said, “See you next year.” That was it.

Obviously, I knew the American healthcare system was broken, but it wasn’t until going through it like this that I realized just how much of a mess it all is. I’ve spent hours on the phone calling insurance providers, hospitals, and various doctors, only to have to go back and start the process over when a specific document can’t be tracked down. I’ve spent hours in waiting rooms and offices, only to be punted down the road. I’ve had the incorrect tests ordered by doctors, which I still have to get in order to get the right tests ordered after, and I then get the pleasure of paying for both of them. And now, I’m driving six hours based solely on the hunch that maybe things will be different if I go somewhere else. That, for once, someone might actually take me seriously.

What they don’t tell you about being sick is that, unless you’re immediately going to die, the doctors might not actually want to do anything to help you. No one wants to be liable for something they don’t fully understand, or that maybe whatever is wrong with you is a little more complex than they originally though. Whatever is wrong with you is manageable, as long as you’re willing to make concessions to your daily life along the way. But I’m not willing to do that. And if that means driving back to Chicago without any plan of action, it’ll mean reaching out to doctors in New York and starting this cycle anew on Friday.

Because someone has to be doing the work to keep me alive. Even if someone is me.