WHY?!

I’d imagine that many folks have dreams of driving across the country in an effort to recreate the great American road trip dream. It’s downright embarrassing American. But seriously, why now?

Today I received some…news. I might be going blind in my left eye.

Well, ok, so the Optometrist probably can’t legally say “Hey, Tina, you’re going blind!”. Despite all the fancy equipment and their medical degree (or do they have a medical degree? The healthcare landscape is hard.), I’m fairly sure that it requires a different specialist. If my past experience with doctors is any indication, they will probably even forget to explicitly state, “Hey, you’re going blind!”. I mean, no doctor actually said to me, “Hey, you have MS!”.

Oh, right. The “MS” (Multiple Sclerosis) stuff. Back in May 2017, I started to have this weird pain. Maybe pain is the wrong word. I’m finding that describing the body and all of it’s feels is surprisingly difficult. Moreover, why aren’t doctors better at interpreting our vague language of body feels? OK, regardless; My eye felt irritated. It just felt like something was in my eye that wouldn’t go away. I had my girlfriend check (at least four times until she refused to check again) to see if there was something in there, but nothing. I kept rubbing it (don’t do that, doctors don’t like hearing that). It got worse and more painful.

At this point, I should be able to say, “I immediately went to the doctor who took me seriously!” But that’s too European. That’s not how America’s healthcare works.

Instead, I went through a rather lengthy process to get my MS diagnosis. Here’s the tl;dr:

  • Tried to schedule with my GP, but she was too busy and wouldn’t fit me in.
  • Went to the ER at Swedish Covenant Hospital where the first crew was very concerned. A CAT scan was discussed but I was in the ER for 2 hours. That was long enough to have a shift change where Dr. Steve Press decided that the bed was more important than my eye. He sent me home with eye drops and said it was a scratch. No CAT scan was given.
  • The eye was not better but still couldn’t get in with my GP for the required 2 day ER visit follow-up. Still no appointments available.
  • Out of desperation, I called an Optometrist. Cue what I was expecting at the beginning; very worried looks. They wanted an MRI ASAP, suggesting I work with my GP. Given our history, I was skeptical.
  • I was in my GP’s waiting room, in tears, begging for them to just call the optometrist. They refused, simply telling me that they hadn’t received the fax so there was nothing they could do. The optometrist’s office was on the phone with me faxing like it was 1999.
  • Given that the internet exists, armed with the info from the Optometrist and WebMD, I figured out that I probably had Optic Neuritis. And also probably MS, but I wouldn’t let myself believe it.
  • Fed up with everything, I started to call around to see who could get me to an Optic Neurologist the fastest. Northwestern Memorial Hospital (NMH) has an urgent clinic specifically for eyes, so I went.
  • The visit to NMH turned into an entire week-long stay. We discussed MS a lot…but still no one said, “You have MS!”. I actually had to ask one of the doctors, “So, you keep talking about Multiple Sclerosis. Is that what this is? Do I have MS?

Seriously. WTF, american health care?!

You might notice, though, that this was in 2017. Ugh, turns out that MS affects a lot and nothing all at once. Maybe someday I’ll write about those things. Suffice it to say, I needed to heal my mind and body. I don’t mean that in some kind of new-agey hippy hipster kind of way. I literally had to heal my brain from the active lesions (thanks, MS!). My body is a constant vessel of pain that ebbs and flows. As an extra fun MS addition, I could wake up blind one day…or not. I could wake up paralized…or not. Basically, you know, life. Something might happen OR nothing will happen. MS just makes the odds way crappier.

So, all of this brings us to this past month. There is a major conference which is vital to my career: CSUN AT (California State University, Northridge: Assistive Technology). What glorious sweet irony it is that my job is making websites visually impaired & blind people can use. Unfortunately, everything in Cali is so expensive. More unfortunate, I’m a contractor. This means that work won’t pay for the conference. All of this is out of my own pocket.

Given the importance of the conference combined with my contractor status, I strongly believe I need to attend. It can open up future job opportunities. And healthcare benefits.

Oh, did I mention that I’m navigating this healthcare hellscape with COBRA insurance (Yet another story for another day)? I don’t have FMLA, meaning that I worked from the hospital the last time I was admitted.

In trying to figure out how to budget, I realized that there were far too many blockers. I have two dogs who are fussy. Flying out means using unpaid vacation. The hotel block for the conference is too expensive for me to afford — not to mention that it’s already sold out. I have thousands of dollars of medical bills continuing to accumulate. Attending the conference already meant I’d have to take out a loan against my retirement. So, in typical Tina fassion, I decided to turn this into an even riskier proposition!

The clear logical & responsible choice: Take a road trip in your aging 2007 sedan where you will live out of said car. #CaRVLife!!!

No, but seriously. 2 weeks ago I started to have pain in my other eye. I kinda freaked out. Losing vision in one eye, no problem. Losing vision in both? That obviously puts some limits on what one can do. I love driving. I once drove down to Ft. Lauderdale on a whim for New Years. I love that I can get in my car and go anywhere. MS taking my vision is taking my freedom and (let’s state the obvious) that’s just not fucking fair.

So, fuck responsibilities. Fuck finances. I decided while I was in the hospital last week that this is my dream and I’m making it happen. Given that there is significant evidence that I’m likely going blind in my left eye, there is no time. I need to do this now.

Rarely in life is the time “right”. Frankly, I’d always rather chase a life lived than living “safe”…and an ill-planned massive cross country road trip seems exactly like my kind of adventure.

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