Quarterly trips to Baltimore for my Botox injections are not exactly a walk in the park for my caregivers, and last week’s rapidfire trip was no exception. Although they are generally stress-filled and appointment-laden trips for me as well, they are also imperative to my recalcitrant muscles and – in some small way – to my peace of mind. These Botox treatments involve 12 painful shots to some incredibly sensitive muscle groups: the sinewy piece of flesh directly in front of my armpit, my triceps and my finger and wrist flexors on the underbelly of my forearm. The injections are intramuscular so the needle is big and the Botox burns, but in 2 to 3 weeks from now I will finally be able to stop perma-clenching my pecs and the ancillary muscles being yanked on throughout my neck and back will gradually relax. It’s not instantaneous and it doesn’t magically enable me to move my arms again, but it’s the only thing that alleviates what has come to be accepted as chronic discomfort.
In addition to helping with pain, these trips to Baltimore also immerse me in a world of almost shocking medical competence. As someone who lives in and (with the exception of the weather) loves Ithaca, the healthcare here – at least for someone with a progressive neurological disease – has been mostly abysmal. When I arrive at Kennedy Krieger’s International Center for spinal cord injuries (KKI), I am no longer an anomaly; it’s like stepping into an oasis of medical omnipotence. When I say things like “I’m afraid the skin integrity under my left butt cheek has been compromised,” the doctor is wholly unfazed and ready to investigate, write a prescription for an appropriate cream and suggest practical solutions. Every single MS -related problem that I have, no matter how obscure, feels almost normal at KKI. And Dr. Recio, who I have seen since 2008, is at the epicenter of all my health-related needs. He understands that people with spinal cord injuries, even non-traumatic spinal cord injuries like MS, necessitate care from a veritable team of doctors: urologists, neurologists, pulmonologists, endocrinologists, gastroenterologists, physical and occupational therapists, mental health professionals etc. etc. The only two medical professionals I currently see who have not been either facilitated or recommended by Dr. Recio include my dentist and my OB/GYN. So for me, the hassle of a 10 to 12 hour round-trip drive, the packing, the perpetually disappointing hotel stays and the inevitable crappy night’s sleep prior to the Botox appointment are actually worth it. And it speaks to the generosity and commitment of my caregivers that they willingly escort me every 3 to 4 months, because I certainly wouldn’t characterize it as fun.
What made this particular trip more trying than previous trips, you ask? Great question. Well first, I
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| En route to Baltimore |
decided – with Mary and Shelly’s enthusiastic consent – that this would be my service dog’s first official working trip. Gem is impeccably obedient, endlessly affectionate and willing to do just about anything I ask her to do, but she is still a dog who needs to be fed and taken out to go to the bathroom. As the interior of my van was packed to the brim for a mere two night’s stay, Gem was relegated to the 1’ x 2’ space between my wheelchair and the door of my van to sit for the 5+ hour drive. We stopped twice on our way down to Baltimore and she peed somewhere in Pennsylvania at about 4 PM on Sunday. That was the last time she peed until the following day. We discovered, somewhat alarmingly, that Gem does not like to pee in strange places – especially strange places in a city without much grass. Fortunately, she has excellent bladder control, but unfortunately every time she stirred between 5:30 PM when we arrived at the hotel and 6:30 AM the next day, either Shelly or Mary would have to get her dressed in her service dog apparel and her gentle leader and walk around the block fruitlessly while she sniffed every single solitary tree embedded within the sidewalks surrounding the hotel. This happened at 6, 9, 11 and – after jumping off the bed in the middle of the night – again at 3:30 in the morning. I love Baltimore and, with the exception of only once in the 12 years I lived there, never felt unsafe, but I also never walked Izzy anywhere in the middle of the night while beseeching her to pee. Such a task seems maddening to even the craziest of city dwelling dog lovers.
The other thing that complicated this particular Baltimore excursion was the weather. On Monday morning when the alarm went off at 6:30 AM, Mary and Shelly and I made the collective decision to get me ready for my appointments and pack up the room so we could leave immediately following my 2 PM MRI. We figured we would drive at least some of the way back to Ithaca and possibly get another hotel (preferably surrounded by grass) depending on traffic etc. The three of us, with Gem in tow, vacated the Marriott and headed up to Kennedy Krieger for my 10 o’clock appointment, and – as promised – all of my most bizarre health issues were competently addressed by Dr. Recio and his staff of nurses and phlebotomists. We left the Botox appointment with plenty of time to grab a turkey burger from a food truck outside before heading one block south for my MRI. An hour and ½ later, feeling somewhat disoriented from my 90 minutes inside a cacophonous tomb having my brain and spine imaged, we loaded into my car and headed north on 83 out of the city. According to my Waze app, we would be back in Ithaca by 8:30 p.m.
Unfortunately, no one warned us that we were driving
directly into a spontaneous snowstorm. Neither did anyone tell us that what
Shelly had described on Sunday morning as “a scratchy throat” was – by Monday
afternoon – Covid. Nevertheless, the drive went swimmingly until – maybe 4 ½
hours into our trip (a mere hour and ½ away from home) – it began snow-pouring
monstrous, fluffy wet flakes of snow that almost immediately coated the road
beneath us with a thick layer of icy slush. Shortly thereafter we discovered
that my “all weather” tires were essentially bald and provided zero traction
amidst said icy slush. It was obvious to everyone in the van (with the
exception of Gem) that we were essentially skating along the highway at the
breakneck speed of 13 miles an hour. As the tractor-trailers sped by us in the
fast lane, completely unfazed by the spontaneous blizzard, my Honda pilot would
fishtail in their wake. No one said anything other than, “we have to get off of
this road” while simultaneously praying that we would find an exit without
either a hairpin turn or a downhill ramp. Even with my car in four-wheel-drive
it was obvious that Mary had little more than luck keeping us on the road, and
there were zero opportunities to safely pull off. We debated, would it be safer
to pull over on a straight a way with a small amount of shoulder, or somewhere
with a larger shoulder but adjacent to a cliff or a deep ditch; if we got
rear-ended by another car driving 60 miles an hour where should we be facing
before being catapulted to our inevitable destruction? At long last we
approached an exit to Route 17 and had space to pull over that would neither
send us careening into a rock wall or a gully, and Mary put the car in park
while I called 911.
Thankfully it was a quiet night in Binghamton and the 911 dispatcher sent us a police escort to get us safely to the exit. We were eventually trailed by a boyish state trooper with his emergency lights on, and with him behind us we were finally confident that no impatient 18-wheeler would inadvertently throw us off the road. We crawled into Binghamton by 11 PM (2 ½ hours after our Waze predicted ETA in Ithaca) and unloaded into a Doubletree hotel where three of us ate a highly dissatisfying meal from Burger King and tried to unwind.
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| Shelly squeezed Gem into the front of the car while we waited on the side of the highway. We feared that if my car was hit from behind Gem might be pegged between the side of my car and by 400 pound wheelchair. |
Although incredibly grateful that we lived through the harrowing 15 miles in a blizzard, Shelly was increasingly certain that her “scratchy throat” was more than a cold and her flushed face suggested more than just paranoia. I, trying to convince myself and Shelly, attempted to assuage her fear by blaming her symptoms on a bad night’s sleep and a stressful drive; how could she possibly have Covid? In the meantime, Mary helped her unpack the obnoxious quantity of supplies and medications that I require for a mere 12 hour stay in a hotel, and we all went to bed as quickly as possible. By the following morning, after Shelly had experienced a restless night accompanied by chills and excessive sweating, she somehow managed to keep her concerns to herself and helped Mary pack us back up while getting me through my morning routine as expeditiously as possible. We returned to Ithaca on shockingly snow-free roads, and within a few hours Shelly’s sinking health-related suspicions were confirmed: she tested positive for Covid. Mary, after having just escaped contracting her husband’s bout with Covid, hoped she was somehow immune and came into work with me for the next two days. I immediately scheduled a Covid test that would correspond with my fourth day after (a prolonged) exposure and warned all of my college caregivers to wear extra PPE when they worked with me. By the day of my scheduled test, Mary too was showing symptoms of impending sickness and she ended up getting tested the same afternoon as I did. The following day she took the morning off and we both anxiously awaited our results: she was positive, I was negative.
It has now been over a week since we all returned; Mary and Shelly are mostly recovered and my second PCR test just confirmed that I am still negative. I guess when one’s immune system is strong enough to destroy one’s nervous system, it can simultaneously fight off Covid? Especially when coupled with a relatively recent vaccine booster and my foolproof immune-activating acupuncture supplements which apparently fend off more than just your average cold. For the first time in my life I’m somewhat relieved to be a bit of a medical mystery. But mostly I’m relieved to have caregivers that are willing to battle the weather, the pandemic and the sundry hurdles that these quarterly Baltimore trips notoriously entail.