On Transportation (part three)

Six weeks after my car was returned with a fully functional door, Suzanne and I packed up three days worth of caregiving accoutrements, meds and clothing to head to Baltimore for half a dozen medical appointments. It just so happened that my roommate from college, Megs, was coming to spend the day with me on Tuesday, the day before I was scheduled to leave. Because she is one of my all-time favorite people to spend time doing absolutely nothing with, I coerced her into a number of really fun activities during her brief getaway to Ithaca. Keep in mind I hadn't seen her without her kids since before her oldest was born (he is currently 12), but rather than rolling out the red carpet and planning some sort of relaxing togetherness time where we could maximize the day (a luxury that isn't afforded to either of us ever), I convinced her instead to fully participate in my life. First we visited the lab so I could get blood work for my GP, then we hit up BJ's so I could have her fill my car with gas, next we visited the "Shoppes at Ithaca" (a.k.a. the saddest mall in the United States) with my dog for some rainy-day mall-walking and finally we headed to Target for a gallon of water for Wednesday's trip (a feat that was somehow harder to accomplish than one might think). Though we did get a moment or two of relaxation while sitting in the mall to people watch with my absurdly insecure service dog, I'm sure the day wasn't quite what Megs envisioned when she carved out time to spend with me in Ithaca during a four-day trip to visit her parents in Skaneateles, but at the very least it was one-on-one time that was way overdue.

Unfortunately, when we returned to my house in the pouring rain and she went to open the door to the Pilot to let me out, the back passenger door – once again – refused to open. As it had just been fixed I was convinced it was an operator error, perhaps Megs just wasn't yet proficient in finessing the door open (even though she had had no problems during any of our previous errands). I asked her to grab my mom from the house hoping that another person would have the lucky touch. Nope. Still wouldn't open. Thinking of nothing other than the logistics that went into coordinating six different medical appointments within two days in a city five-and-half hours away, I slipped into panic mode faster than a rational person should have and immediately called United Access in Syracuse (where the car had just been fixed). As it was 4:30 PM, the main office was already closed but I eventually got through on some sort of emergency line and spoke to someone on call. He, naturally, was not familiar with the Honda pilot's accessibility features, but he contacted Mike – the mechanic involved in my door's most recent fix (see "On Transportation, part two"). While I waited to hear from Mike directly, I called Shelly – if anyone could get me out of the car (again) it would be Shelly. She agreed to postpone her Peloton workout and arrived within 1/2 an hour; she pulled into my driveway just as Mike called me back. On speakerphone, Mike patiently talked Megs and Shelly through the disassembly of the panel that covered the inside bottom of the broken door (thank goodness I don't leave the house without a set of Allen wrenches in my backpack). Once the panel was removed, Mike was able to help my two friends problem solve a few things in order to release the latch. At that point, the goal was merely to get me out of the vehicle. Quickly, our short-term goal was achieved, but the long-term problem remained: how do I prevent this from happening 300+ miles away from home when I'm in Baltimore?

I then tried to long-term problem solve with Mike on the phone, emphasizing my desperate need to make it to Baltimore the next day. Unfortunately he was disappointingly uninterested in sending someone out to Ithaca the following morning to fix things. He explained that if – and only if – they had the technicians, the tools or the time to make a house call, it would necessitate a service charge for two hours of round-trip driving in addition to the service charge associated with a presumptive "fix." I countered with another idea,

"Since this problem was clearly not fixed properly less than two months ago, maybe you could deliver a rental car here and take my car back to your shop? Then I could still get to Baltimore for my doctors' appointments?"

That option was quickly shut down as well. An option like that was "was out of [his] hands" so I would need to contact corporate. Plus, the two people bringing me to Baltimore were under 25 and ineligible from renting a car anyway. By this point, I was out of the car and in the laundry room of my house, and my mom was privy to the runaround. She quickly usurped my phone and lost her mind. (I had warned Mike several times that he should make things right in order to avoid my mom's involvement.) Nonetheless, my mom's decidedly undiplomatic lamentations failed to earn us any favors, but did lead Mike to angrily suggest we contact "customer service" with our complaints and direct our frustrations elsewhere. I asked him for the number before we finally got off the phone on (somewhat) less-heated terms. To conclude, by the end of my phone call with Mike, I had no guaranteed transportation for the next day's travel. And in case you're wondering, the customer support specialist that I contacted never called me back.

I suppose, while it put a damper on the conclusion of my afternoon spent with Megs, she did get an honest glimpse into the current status of my life.

I headed from the laundry room straight to my computer to email the study coordinator at Johns Hopkins and let him know that as of 6 PM on Tuesday night my car was not reliable to drive and there was a high likelihood I would – once again – be canceling my participation in the study. I'd have to wait till the following morning to cancel my DEXA scan, Botox and MRI at KKI . He might have been the only person as irritated as I was because he had coordinated all of those study-related appointments around my time-consuming caregiving schedule – appointments needed to happen late enough in the morning that we wouldn't have to wake up at 5 AM, but early enough in the day that we could leave shortly after for the five and half hour drive back home.

While I contacted the study coordinator at Hopkins, my mom called her industrious contractor (see part two) who summoned Paul, another guy who had worked on our house. Paul's side-job involved cars, so he had the desired amount of mechanical acumen and history with my family and he agreed to check out my door before 8 AM the next day. On the off chance that Paul – the man who had recently installed closet doors in my mom's bedroom – could fix my handicap accessible car seemed like a shot in the dark – but it was the only shot we had left. Suzanne planned to come at seven the next morning in hopes I'd still be leaving. (She even agreed to be my contingency plan should I miraculously hear from customer care and they were willing to provide me with a last-minute rental for the trip.)

I went to bed Tuesday night hoping for the best but expecting the worst.

Wednesday morning, though, by 7:45 AM, Paul had exceeded those expectations. He dissected the door, diagnosed the problem and fixed it using zip ties. Apparently the replacement cable was several inches too long and Paul was surprised it had functioned for as long as it had. He mentioned he had never seen something so haphazardly "fixed" which I explained – when it comes to a vehicle's accessibility features – seems to be par for the course.

Gem and me at Kennedy Krieger (a few years ago)

Jill (my patient and technologically savvy caregiver from my previous blog), her friend Madi and I left for Baltimore shortly after noon that same day. We made it to Baltimore – even with pretty despicable weather – in time to order in Indian food and relax for a few hours before heading to bed. And the next morning, despite waking up to a migraine that persisted throughout the entire day, Jill got me to all three of my back to back appointments on time; appointments that each required a dependent transfer under offensively bright fluorescent lights. She was even somehow able to hold my arms still during 12 separate intramuscular injections and two separate blood draws (all of which make my arms reflexively spasm) before finally taking a short nap during my 90 minute MRI (the last appointment of the day). The next morning we packed up the hotel and headed out to Hopkins for the three remaining arms of the study, and we were on the road back to Ithaca by two. Caregiving for me with a migraine undoubtedly made Jill the MVP of the rapid-fire trip (although Madi did an incredible job navigating to and from Baltimore with such confidence in following the GPS and competence in highway driving that I relaxed enough to nap with confidence, a complete luxury).

But the true MVP of the week? Paul. The contractor-turned-accessible vehicle miracle worker.

My pilot – in case anyone is wondering – survived more than a week with Paul's zip-tied remedy. And it is currently being serviced at United Access Rochester. Most importantly, for the first time ever, I'm driving a complementary accessible rental van.