I (will always) Remember Running

I have a new therapist who patiently castigates me for not letting myself feel my emotions. To a certain degree I know that she is right, but on the flipside, what is the purpose of wallowing in self-pity to the extent that I might be inclined? I always tell her that feeling all my feelings is unproductive. She counters that with, feeling your feelings is what helps you to process them. I argue back, how can you process something that is still happening? At some point, God willing, maybe this disease will be cured and I will once again be able to scratch my own nose/wipe my own tears and I will be afforded the opportunity to process my decades-long continuous battle with this disease, but in the short term I think I need to keep it moving forward.

But there is one exception to this rule: when I watch my high school students run track.

 I retired from teaching in 2012 and moved from Baltimore, Maryland back to my parent’s house in Ithaca New York. I was 34 years old and I had just completed nine months of chemotherapy as a last-ditch effort to get my inexplicably “relapsing” form of an otherwise progressive case of multiple sclerosis under control. At that point, I had tried every other pharmacological option available to me, in addition to regular physical therapy, an amalgamation of diets and an haphazard attempt at spiritual warfare. My doctor and I weighed the pros and cons of going on chemotherapy monthly versus being on no type of disease modifying medication, and I opted for the former. I really wanted to feel like I had tried every option available and given my body a fair shot to respond positively to something.

 

Chemo – as it is wont to do with everyone – wreaked havoc on my body. There are people, some of whom I’ve known personally, who bravely endure daily doses of chemo that immediately lead to hair loss, nausea, weakness etc., and many of those people continue working throughout. I was not one of those people. I was not even receiving therapeutic, cancer-combating doses of cytoxin, but after my first dose I was down for the count for almost an entire month. As one of the few MS patients who has never suffered from fatigue, post chemo I could not stay in an upright position in my chair for longer than a few hours at a time without needing a nap. Never mind the impact it had on both my GI tract and my bladder, it was the complete exhaustion that made full-time work start to seem impossible.  But despite the obvious, I doggedly refused to quit my job teaching world history at Baltimore Polytechnic Institute and instead worked with my supportive and equally dogged union rep to figure out a way to get me a “co-teacher” for the year. I would be the lead teacher except for the one week per month that I would spend recovering from my monthly dose of chemo.

 

So I (mostly) made it through one last academic school year at Poly, and despite missing at least one full week out of every month of the school year, I even received the excellence in writing instruction award at my last ever faculty meeting (ironically my reward was a pen that I was never able to physically hold). By April of that year, however, it was clear, even to my stubborn self, that chemo had not really helped my cause. I spent the duration of my spring break getting a second opinion from a highly recommended neurologist in New York City before ultimately imploring my own doctor to admit me to Meyer Nine at Johns Hopkins for a last-ditch attempt to feel at least a little bit better. It was actually there, in my single occupancy hospital room, where I first realized I was probably done. At that point, I had two brilliant live-in Kenyan caregivers who collectively cost more than my teaching salary afforded, I had burned through all 50+ all of my saved up sick days and was no longer receiving paychecks for the days I spent in the hospital or recovering post chemo, I could no longer sign hall passes using my right hand, I needed help from literally everyone around me to make copies, enter grades, comment on papers, etc., and I was living in an apartment that – though impressively retrofitted to accommodate my evolving needs thanks to an excessive amount of grab bars – was certainly not intended to be lived in by a quadriplegic in a 360 lb. motorized wheelchair. I reached out to my aforementioned union rep and told him it was time. He communicated with my administrators, told my co-teacher that she was in charge and helped me navigate at least the beginning of the early-retirement process. Most of which, to be completely honest, I think I have since blocked out of my memory.

 

The retirement process, my interactions with my Poly students for the duration of the year (I did end up finishing out the school year despite having officially “retired” and no longer receiving paychecks), the two disastrous caregiving experiences that preceded the amazing Kenyans and maybe even an in-depth explanation of my road to chemotherapy all deserve individual stories at some point. As does the soul crushing depression that accompanied the end of my life in Baltimore. But for the purposes of the rest of this particular blog, my retirement from Poly and my move to Ithaca is what placed me in Cornell University’s Barton Hall in the winter of 2024. My mom’s boyfriend – who graciously agreed to spend one of his weekend afternoons at a high school track race – was at my side while I watched students from my own alma mater (where I currently work) run their hearts out on the indoor track where I ran my first ever indoor track meet for Colgate in the winter of 1996.

 

That was a long preface.

I have not run competitively since 1997. That is longer than most of my current caregivers have been alive. But the feeling. The feeling when I step (metaphorically) into Barton Hall takes my literal breath away. Outdoor track meets hurt a little, but not like indoor meets. Within the confines of the Fieldhouse, my self experiences a sensory overload that borders on assault. I inhale the ever-familiar scent of the rubber track, the sweetness of sweat, the smoke from the gun firing twice to indicate a false start, the menthol from icy hot being rubbed into athlete’s muscles – smells that combine into a perfume that I absorb eagerly even as my chest tightens. As I inhale memories, my ears are inundated by cheers reverberating from all angles; shouts of encouragement erupt from spectators in the above stands, teammates and coaches in the infield and parents on the periphery of the track. Coaches with stopwatches and clipboards yell splits as the official, standing immediately to the inside of lane one, flips the indicator of remaining laps – as if any runner could ever doubt the number of laps that remain. There are intangibles as well; feelings that penetrate as if by osmosis –nerves and excitement and exhaustion. Disappointment and frustration and victory and relief. All feelings I know intimately – from both track and life. I absorb everything and watch with rapt attention for the one race that will initiate my unraveling. Sometimes there is more than one. It's always in the last lap and it's the look of triumph over agony; determination over defeat. It's written all over a runner's face and it's a resounding reminder – for me – of what once was, and what (maybe) could have been. There is nothing like it. It is the only thing that reliably – since 1997 – always moves me to tears.

 

I was not a track star. In fact, while I ran from middle school through my senior year when I eventually captained my high school cross country team, I only ran track for three total years – my junior and senior year in high school and my freshman year in college. But at Colgate I developed two things: a hunger that felt insatiable and the confidence in myself that I needed to finally succeed (as a runner and as a person, which at that point in my life felt inextricably linked). Running – and my proximity to success – are what made my life matter.

15 years ago I wrote an article called "I (still) remember running" because, of all the things I can no longer do – and the list is even longer now – I can still remember exactly how it felt, spikes on, to approach the line filled with nerves and anxiety as the ref yelled "set." And I still remember how – once the gun went off – everything else around and within me was somehow still. I had one thing to do. One thing. Run the race. Fast.

Running is not what I miss the most. It was the first thing I lost but by no means the hardest (at least in retrospect). I wonder then, why is it that watching a track meet is the only surefire way to make me feel the gravity of my loss; the only time I can cry in my very personal, barely discernible, muted fashion.

Why do I want to share this? So that maybe other people might know what a miracle it is to be able to rely on your body. To take joy in its successes. To concretely connect your mind to your own movement in moments of both triumph and defeat, endorphins and pain. To know that those moments are in your control and that control is miraculous. And maybe, as I write – speaking to this computer with a persistent lump in my throat – I will process something that makes me believe, as I did when I stood on the starting line, that I can (still) do this. And I will.

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.

On Transportation (part two)

2018 VMI-converted Honda Pilot

Five months later – out of seemingly nowhere – I had another issue with my accessible vehicle. I went out to dinner with a friend (who I had not seen in ages) and when we got back to my house, she opened the back passenger door and the handle fell off. Fortunately, it fell off after she had already gotten the door open and I exited the vehicle. Hoping it was something we could re-affix easily on Monday morning, I didn't lose any sleep over it. It turned out, however, that the handle hadn't just slipped off the metal shaft, it had physically broken. So when I went to get in the van to do some erranding on Monday, reattaching the handle was trickier than I anticipated. If you held it just right it unlatched the door, but it wasn't catching the way it was supposed to. Nevertheless, we loaded me into the vehicle and drove to Honda to ask some proper mechanics for advice. The mechanics graciously examined the broken handle, explained that it was part of the modified portion of my vehicle and directed us to Home Depot to try to find a replacement handle. We headed to Home Depot and unfortunately found nothing, but we were able to get the van door open so I could accomplish my shopping at T.J. Maxx and pet smart. Suzanne, my new-ish caregiver, and I arrived back at my house around 4 PM.

Unfortunately, the broken handle decided it was done for the day when we returned. The handle wouldn't catch on the metal rod attached to the latch, so the piece that kept the door securely closed would not release. Panic slowly set in for Suzanne as she envisioned transferring me – sans wheelchair – out of the passenger door, when I noticed a truck parked on the street in front of my house: "Suzanne, go in the house and see who's here? Maybe it's a man that knows how to fix things!" (Not very feminist of me, I know, but when you are me and you have gotten yourself into innumerable pickles, you start to know when to outsource your problems.)

The broken door handle

Suzanne came out of the house – not only with a man – but with my mom's contractor. A handsome, industrious man who had just happened to be the one that converted our previous dining room into an accessible living area for me. I started to think that Bella, one of my dates to the wedding in part one of this story, was right when she said, "God has favorites and you are one of them!" Art (the contractor) came out to the car, diagnosed the problem and retreated to his truck for a proper tool. He then affixed a channel lock to the metal shaft and was able to gently coax the shaft to rotate in order for the latch to release. I was free. Suzanne was ecstatic. Art then generously left his channel lock in my van so Suzanne could get me to school the following day. All was right with the world. At least temporarily.


I called United Access the following morning and explained the broken handle and asked if they could order me another one. They told me they'd let me know when it arrived and that the Pilot should probably be checked out in their Syracuse location for a full assessment and reinstallation of the handle. In the meantime, Shelly, my personal MacGyver, replaced the cumbersome channel lock with a smaller wrench which continued to get me in-and-out of the van with no issues. 10 days later, the new handle had arrived and my mom and her angel of a boyfriend (Russ) trekked up to Syracuse on a Friday morning for things to be checked out and the handle reinstalled. The two of them left the pilot at United Access and went to lunch with a friend thinking my car would be ready to go within a few hours.

It wasn't.

My mom texted me around 3:30 telling me she and Russ were heading back to pick up the car and they'd likely be back by five. Relieved, I continued doing whatever I was doing and didn't give it another thought. Then my phone rang: United Access Syracuse. This couldn't possibly be good.

I answered the phone, already prepared for the bad news, "Oh no, what's the problem?"

Mike replied matter-of-factly, "Kate, we were just showing your mom how well the door opens with the new handle, and it wouldn't open. We did some further investigating and the cable on the inside of the door is corroded. Your car is unsafe to drive. Your mom and Russ will be getting a ride back to Ithaca with your brother, we're gonna need to keep the car until this gets fixed."

I immediately understood why my mom didn't want to be the one to share that news with me. I proceeded to lose my shit.

"What do you mean the car is undriveable?"

" With a corroded cable the door is not latching properly and it could fly off on the Thruway."

" Can you give my mom an accessible rental van to get home with?"

" We don't have any in stock currently."

I exited the phone call shortly thereafter, seething with anger and too disappointed to even use my words.

One of my friends told me once that he thinks I am incredible at getting myself out of jams. At that moment, though, I felt defeated. I felt defeated because that phone call happened after 4 PM on a Friday – how the hell could I find an accessible vehicle before the close of the business week? It was Russ's birthday weekend and I'd made surprise plans for him at a karaoke place in town, and we had dinner reservations afterwards with his daughter. Plus, the day after was the last regular season hockey game and Madison and I had season tickets. Was I just going to sit home all weekend feeling sorry for myself?

I called Shelly. Shelly can usually fix anything. She had just fixed my door temporarily. I called her and gave her the rundown and we both started thinking outside the box. We wondered out loud: does the local rental car company have a minivan I could rent and we could pull out the seats in the back and use my manual ramp to enter? No, that wouldn't work because my wheelchair's too tall and regular minivans don't have lowered floors. Shelly suggested putting me in the back of a U-Haul – sometimes they had trucks with ramps. We could potentially put the wheelchair in the back and transfer me into the front seat; it would definitely be a hassle but it could get me out of the house with my wheelchair. Shelly jumped in her car and drove downtown to the U-Haul company before it closed, and I started making phone calls. First on my list: Tompkins County Airport transport. They answered and told me they thought either Yellow Cab or College Town Cabs might be a possibility, but the airport itself did not offer accessible transportation. I then called Yellow Cab. Apparently they used to have an accessible vehicle but they did not anymore. They advised me to call College Town Cabs. I did.

"Hi there, my name is Kate and I'm wondering if you guys happen to have a wheelchair accessible cab?"

"… (Awkward silence) why yes, ma'am, we do. When do you need it?"

"No way, that is such fantastic news! I'd need it tomorrow around 3:30, and then again at 5:30 PM just to get to dinner locally."

"Oh, I'm so sorry ma'am, it is not available at all tomorrow. And the man who drives the van does not give rides after 5 PM."

" Oh, so I couldn't reserve the van to get to the hockey game this weekend?"

"No ma'am, the accessible van is not available on the weekends at all."

The conversation continued much like this for another 10 minutes. Whoever this mysterious man who is in charge of driving the one accessible cab in all of Ithaca, works only very specific hours and is booked out for weeks. Could I reserve it to get to school on Monday? No. How about school on Tuesday? No. Could I reserve it to get to my dentist appointment on Wednesday? No. Could I reserve it to get to a research study at Cornell the following Friday? No.

To use another of my friend Bella's favorite expressions: Christ on a bike!

Shortly thereafter, Shelly returned from U-Haul – their current inventory would not accommodate my chair. I was flummoxed. And back to feeling helpless. How – in a world where artificial intelligence can now write full essays for students and Elon Musk is transporting people into literal outerspace – could I not figure out a way to get myself (and my 360 pound wheelchair) out of my house?

Shelly and I decided not to cancel the surprise karaoke plans. I sent my mom out the following morning to retrieve my manual wheelchair from a family friend (who was not using it anyway), my mom cleaned off the dust and cobwebs from years of nonuse and we decided I would transfer into Shelly's passenger seat, head to K house the next afternoon, and sit (albeit uncomfortably) in my manual wheelchair during karaoke. Then, my mom changed the reservations for Russ's birthday dinner to a restaurant within a mile of my house so we could come back to the house immediately after karaoke, transfer me out of Shelly's car and back into my power wheelchair where, together, Russ and I could "walk" to the restaurant.

Shelly (a.k.a. MacGyver) and me at K-house

So with a few added complications (and additional transfers in and out of regular cars), I survived the weekend without an accessible vehicle. I even made it through a 2 1/2 hour hockey game sitting in my manual wheelchair. I had not, however, figured out how I was going to get to school, the dentist or the study at Cornell the following week. It was a problem no one could solve until Monday.

By 8:30 on Monday morning I had already called United Access in Syracuse to check on the status of my car (they were still waiting to hear back from VMI), called 311 (per someone's recommendation) to get information on accessible transportation options in Ithaca and then called Gadabout to learn how to become eligible for its ADA paratransport program in Tompkins County. Even if United Access suddenly had a rental car available, I was vehemently opposed to paying $150 a day for the indefinite amount of time we might be waiting for a replacement cable on principle. Besides, using Gadabout could be empowering were I to ever find myself in this predicament in the future; it couldn't be too hard to figure out.

The thing I just cannot overstate, though, is how hard it is to accomplish anything without functional hands. Throw a 13-page PDF form my way that does not interface with my Dragon dictation software and I slip precipitously close – once again – to defeat. Luckily my caregiver on Monday morning was Jill, a recent OT grad from Ithaca College; someone with infinitely more patience and technical acumen than I possess. She helped me tackle the entirety of the application. But even with my able-bodied assistant, there were a number of questions throughout the application that we could not answer. I.e.) how does your disability limit you from taking the bus? I looked at Jill,

"Are all of the buses handicap accessible?"

"I have no idea."

Great, so in addition to being disabled I am completely ignorant about how public transportation even functions in Tompkins County. For example, I know there’s a stop at the end of my street, maybe 400 m from my front door, but where does that bus go? Does that bus have a lift and tiedowns to accommodate a wheelchair? Does that particular bus go to the high school? Would I need to research the specific bus routes that I may or may not be able to access? Jill quickly snapped me out of of my anxious hypothesizing:

"You really can't do any of this independently, because you can't even open the front door of your house to get outside. And if it's raining your head array doesn't work, and if it's too cold your neck is too stiff to safely drive your chair."

Oh yes, that is all true.

So we answered the questions as briefly and honestly as we could and sent it to the kind woman who worked for TCAT by early afternoon. Much to my relief I was approved for ADA paratransport by 5 PM on Monday – mere hours after the paperwork was submitted as opposed to the 7-21 days the website warned it might take for approval. The only bad news was that gadabout/paratransport was closed by 4:30 and one needed to request an accessible ride 24 hours in advance. I wouldn't be able to start scheduling the rest of the week until the following morning. After problem-solving this predicament since Friday afternoon, by Tuesday morning I'd finally be able to schedule the rest of the week.

On My Way to School

I called them in the morning as soon as Suzanne got me out of bed and attempted to schedule rides for three appointments that week – school by 1:30 PM on Wednesday, a dentist appointment by 1 PM on Thursday and a research study at Cornell University by one on Friday. Scheduling the rides was not difficult, but they couldn't tell you the specific time they'd pick me up until after 3 PM the day before. And then no one told you what time you'd be picked up after the appointment until the morning of the scheduled appointment. They tried to coordinate the rides to be within an hour of the proposed appointment time, but they couldn't make any guarantees. For example, I called on Tuesday after 3 PM to see what time someone would pick me up to be at school by 1:30 the next day. The answer? 12:15 PM. Then I had to wait until Wednesday morning after 8:30 AM to see what time they were picking me up (the day ends at 3:40). The answer? 4:45. So this is how it went. Paratransport offers an immensely valuable service to the entirety of Tompkins County and I could not for the life of me imagine the difficulty of coordinating rides to-and-from doctors appointments for every person that might qualify for this service. But at the same time, my mere existence already necessitates so much time that my tolerance for wasting it is nonexistent. Spending an extra hour on either side of an appointment waiting for and relying on public transportation – as grateful as I am that it exists for people with chairs like mine – pushed me just a little bit closer to the end of a very thin rope.

I have absolutely no idea what my life would be like were I able bodied, and I’m sure I could still find an amalgamation of things to complain about on a daily basis. But for those two weeks, I thoroughly resented the heck out of my current life. In addition to the oppressive amount of time and energy I waste on this disease (my morning and night routine, on a good day, takes a minimum of seven hours), if I think about the financial impact this disease has had on both my own bank account and my family's, I absolutely do lose sleep at night.   

All of that said, I made it through an entire week without an accessible vehicle. By Friday afternoon though – even before the Cornell research study (that should be a separate story of its own) – I did decide to call uncle on life without an accessible vehicle. We paid extra for someone from Rochester to deliver the only available accessible rental vehicle (saving my mom and Suzanne yet another trip to Rochester) and were grateful that despite a rate of $150 a day, we only needed it through the following weekend. The mysterious part that United Access had warned us would take 10 to 14 days at best to receive from VMI did arrive without any additional delays, and my Pilot was fixed exactly 2 weeks after it had been deemed unsafe to drive.

How well it was fixed, however, is a story reserved for part three.

 

On Transportation (part one)

Danielle, Bella, and Me

I got a text from a friend last week letting me know that there is currently a class action lawsuit against Dunkin’ Donuts for discriminating against people with disabilities. Unbeknownst to me, lactose intolerance now qualifies as a disability under the ADA, and as such lactose intolerant customers do not feel they should be charged an extra $0.50 for oat milk.(see more here!) This lawsuit, if it ends up going to court, seems like a dangerously slippery slope for companies that manufacture things such as vehicles to people with disabilities. For example, a moderately priced, middle-of-the-road 2024 Honda Odyssey costs $46,895. Modify that same exact van and the average wheelchair user looking for the relative freedom that a car provides will pay $83,929.

 

At the end of September, on the way home from my "sister's" wedding in Chevy Chase, Maryland, my friend Danielle (also one of my two “dates” to the family only wedding who is both a cherished friend and newly retired caregiver) got into a car accident on 270 N. right outside of Frederick Maryland. It was the scariest accident I’ve ever been involved in, but miraculously the three of us escaped unscathed. Bella, my other “date” was holding a Green Machine smoothie, turning around to give me occasional sips out of a straw. When – with no warning – Danielle slammed on the brakes at 65 miles an hour to avoid the Dodge Charger who abruptly came to a halt in the fast lane of the highway, the contents of the juice ended up all over her face, neck and bosoms as the front driver side of my vehicle decimated the rear end of the Dodge. Still though, we were incredibly lucky: no one was injured in either car and the only noticeable internal damage to my Pilot was the contents of green smoothie all over Bella and the passenger seat. Moments after I processed what had happened and Danielle had pulled the car over to the left shoulder, my relief was exchanged for panic. We still had five hours left of our drive back home to Ithaca on a Sunday afternoon. What were we going to do if my handicap accessible vehicle was no longer safe to drive? Bella, still in her sixth year of PT school at Ithaca College had class on Monday, Danielle needed to get back home to Rochester that night and I had school the next day. Knowing it would take a dad of some sort to help problem solve, I called Sonya (my sister who is not actually my sister) and told her what happened. She told her dad (who is not actually my dad) and he went in to fix-it mode. >Thankfully we didn’t need any immediate fix, because finding potential solutions proved impossible – both in the moment and – as it turned out – once we returned to Ithaca, even for a pretty awesome dad. So despite the immense hassle that I'm about to document, I must first acknowledge a freakish number of providential things that happened immediately after the accident. First, the guy in front of us was not injured (although we couldn’t say as much for his Dodge Charger), second, the cop and volunteer firefighter at the scene determined that our Pilot seemed safe to drive. Especially after the various pieces of it were retrieved from the road and safely placed in the back of the vehicle. The firefighter responsibly suggested that we take the next exit off of 270 and purchase zip ties from Home Depot in order to hold my bumper together, but other than that, nobody seemed concerned about sending three non-mechanics back onto the highway for a five hour drive home.

My car upon safe(ish) arrival in Ithaca

Providential occurrence number three occurred in a handicapped accessible parking spot at Home Depot in Frederick. While Bella ran in to get the zip ties, Danielle got out of the driver’s seat to attempt to open the passenger side back door – the only door of the vehicle that I am able to exit because of the ramp under the floor. Unfortunately, the door did not open. At this point, the car parked next to us was just about to pull out and the driver – noticing there was a problem – put his own car back into park and got out. He asked Danielle if she needed help because he noticed we had just been in an accident. Relieved, she explained what happened and he helped her get the door open (this door becomes a prominent feature in my next blog). The helpful man, whose name I don’t remember of course, just happened to be a mechanic for Volkswagen, so by the time that Bella returned with the zip ties, he also offered to help temporarily fix the bumper. The mechanic was soon joined by yet another volunteer firefighter who stumbled upon the scene and he helped us check a few things before we drove again – that the blinkers worked, the hazards worked, the steering wheel turned properly, and that nothing was stuck underneath the front end of the car. He also was the one that listened when I said “something smells like it’s burning”, and fortuitously looked under the car and removed the dragging splash guard under the vehicle. After getting what seemed like a basic 10 point inspection from two benevolent strangers outside of Home Depot, we felt immensely more confident about the remaining five hour journey ahead of us.    

Unfortunately, though we did make it home safely, the end of our journey also marked the end of benevolent strangers coming to my rescue. Back in Ithaca, the reality of the accident-related hassle started to set in by Monday morning. As I often do, I slowly lost my grasp on gratitude and replaced it with irritation. First source of irritation: my insurance company, USAA. I have had USAA insurance for my entire driving life thanks to my dad “serving “ in the Air Force. Not only did USAA insure all the vehicles I’ve driven in my lifetime, they also insured my parents' vehicles, their home, and even my own rental insurance throughout 12 years of apartment living in Baltimore. Even my myriad investment accounts that I started in my early 30s were entrusted to USAA. To date, I was always pleasantly surprised by USAA’s customer service and commitment to its members. After this accident, I no longer feel that way. They made every part of the claims process a complete nightmare. Starting with – and I know this the case for every accident where you hit someone from behind – immediately assuming the accident was our fault. The driver in front of us came to a dead stop in the middle of a highway where the traffic was moving at a steady 63-65 mph. Danielle – unlike many drivers I know – was not following too closely behind, was not otherwise distracted, was not driving irresponsibly. She was, however, driving a shockingly heavy converted Honda pilot that had no chance to stop on a dime the way the Dodge Charger did. And when Danielle got out of the car and immediately checked on the other driver, his first response was “I thought the car in the median was pulling out” – an admission that he stopped in the middle of the highway. Naturally, that detail did not appear in his retelling of the accident to either insurance company, so we were assigned blame. There were no other witnesses to interview (the people who hit us from behind fled the scene). 

More obnoxiously, rather than send an insurance adjuster to our house to appraise the damage of my vehicle, we were asked to send photographs to the insurance company so they could assess the damage and assign a monetary value they’d be willing to cover – a mere $3400. We ended up taking the car to a mom-and-pop shop that has – to our knowledge – never tried to nickel and dime us in the past, and even though they had it fixed within less than a week, the cost was still $6600. If you’re thinking to yourself, Kate, this sounds like every other accident story I’ve ever heard about and you should just count your blessings that you were okay and your vehicle was drivable, I completely agree. But here is where the wheels come off the track. While my car was being fixed – the duration of which we didn’t even know – I could either stay home and do nothing or I could rent an accessible vehicle. USAA determined they would help defray the cost of the rental vehicle by $30 a day. The only problem that remained was a) there were no accessible vehicles to rent in Ithaca New York and b) accessible vehicles cost $150 a day to rent. Plus mileage. And naturally, that would include the cost of the mileage between the distant rental company and Ithaca, despite the fact that there were no other options (I personally find this more egregious than having to pay an extra $0.50 for oat milk in my coffee).  

My Honda Pilot was fixed by Mullins garage in four days for a mere $6600. USAA covered everything except the deductible. We weren't so lucky with a rental van. Because accessible vans are in short supply, you needed to pay upfront and you could not add on extra days once you'd reserved your dates. Just to be safe, we planned for a full 10 days with the rental. In addition, my mom and caregiver (who also charges me by the hour) needed to make two trips back-and-forth to Rochester; a grand total of eight hours worth of driving. The grand total for the rental, at a discounted rate of $120 a day, was $1200. USAA reimbursed us $300. 

Oh, and the icing on the cake? They raised our rates.

My sister (Sonya), Kirby and me pre-wedding

On Baltimore, Botox and Covid

 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

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.

Gem showing off her door opening skills in the hotel. 

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.

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.

Introducing Gem

 

Shortly after posting my last blog, I spent the next month doubled down on service dog applications. I submitted initial applications to 10 different service dog organizations throughout the country and received official follow-up applications from only two programs: ACTS (Assistant Canine Training Services) in North Conway, New Hampshire and K9s for Mobility in Cheyenne, Wyoming. I filled out each extensive application, detailing the extent of my disability, my familiarity with dog ownership and the types of tasks a potential service dog might complete for me. I solicited references from friends who could attest to my ability to care for a dog despite my physical limitations and harassed my neurologist to complete a rather lengthy questionnaire explaining the specifics of my disability. I was then asked to compile videos showing the layout of both the inside and outside of my house. To my surprise, within a week I was offered a Zoom interview with both programs. Neither ACTS nor K9s for Mobility mentioned anything specific about the timeline I could anticipate, but I looked forward to both interviews with a renewed sense of hope. At the very least, the amount of time and concentration I spent completing the applications got my mind off the almost suffocating loneliness I felt without Izzy by my side.

 

When comparing the two programs, I ultimately felt more drawn towards ACTS because of its (relative) proximity to Ithaca (an eight-hour drive as opposed to a flight requiring layovers etc.), and because of the warmth and commitment I felt when meeting Nan Ippolito, the director of client services and Mary Russell, the director of graduate services during the interview. However, two weeks later I interviewed via Zoom with K9s for Mobility in Cheyenne and, catching me completely off guard, they invited me to fly out there in October to meet potential “matches.” Wanting to be completely transparent with both programs, I emailed ACTS immediately and told them I was invited to Cheyenne to meet potential service dogs in October, but that I first wanted to inquire about what type of wait-time I might expect through their program. To my complete surprise, Nan asked me if I could possibly delay booking travel by a week because they planned to “evaluate” one of their current dogs on August 31. Contingent upon the positive outcome of that evaluation, they were planning to offer her to me. But, if she failed her evaluation I could expect a 1 to 2 year wait for another potential match. I immediately channeled my cosmic energy and prayers to all the things: Jesus, the universe and Izzy’s indestructible spirit. I do not know what role dead dogs play in facilitating future dog ownership for the people they leave behind (especially when said dog actively despised most of her fellow four-legged friends), but I desperately wanted Izzy’s help in finding her successor. So I asked all powers that be – Izzy included – to guide this unnamed dog to pass her evaluation if and only if she would be a perfect fit for me and my unconventional lifestyle.

 

I must have refreshed my Gmail inbox 327 times on the afternoon of August 31, but I did not hear a word from Nan and started to assume the worst. I reassured myself that everything would be okay, I didn’t feel “ready” for a new dog anyway. The next morning, I stumbled through my duties with Mary and tried to focus on other things. It wasn’t until my post-stander bathroom routine that I received a phone call from an unknown number and answered eagerly, hoping it would not be another reminder about my car’s extended warranty. It wasn’t. It was Nan. I felt my heart leap into my throat as soon as I heard her voice. When her opening sentence was, “Kate, I have great news…” I started crying before she even finished her sentence. She must have been confused by my silence, but my words were unable to fight their way through the heart-shaped lump in my throat. I look imploringly at Mary as if to say, say something for me, I can’t talk, but Mary was crying as well. Nan went on to explain that the dog they were offering me was a black lab named Gem, and she would be mine by Thanksgiving if I could coordinate plans to make it work.

 

After what could only be perceived as an awkward silence, I was finally able to articulate some sort of affirmative response in between halted breathing and inaudible sobs and attempted to assure Nan that these were happy tears. Happy tears that I didn’t know I was even able to produce. Before Izzy died in June, it had been nine years since I could remember producing actual tears out of my eyeballs. In fact, I communicated concern about this to my doctor a few years ago, wondering if perhaps MS had stolen my ability to emote properly, or if my years of Lexapro consumption had finally done irreparable damage to my limbic system preventing me from physically producing tears. Whatever the cause of my relatively recent emotionless existence, my last conscious memory of crying was on July 1, 2012, when I left Baltimore to move home to Ithaca. However, when Izzy died, it was as though she bequeathed me the gift of tears once again; losing her was immensely painful, but for the first time in nine years the pain had somewhere to go rather than inside my body, it streamed down my cheeks. When Nan told me about Gem that afternoon it was the first time that I realized I also was capable of tears of joy.

 

Throughout this process I have had numerous conversations with Nan where I have doubted my worthiness of an actual service dog. Dogs raised through ACTS have more skills and knowledge than many middle school students I have taught, and considering the fact that I almost always have a caregiver with me, would I be a waste of a service dog’s abilities? Do the people in my life negate my need for a service dog? The self-doubt continued to spiral: am I too disabled for a service dog? Would the skills of a service dog be squandered in my household where so many of my needs require the dexterity of fingers? Are there so many caregivers on my caregiving team that consistency would be impossible? Am I destined to bore or – worse yet – ruin an actual service dog? When I expressed these fears to Nan prior to my interview, she was so reassuring – as the layers of smothering insecurity piled on, she assured me that I was a perfect candidate for a dog of this caliber; that I deserved a service dog. So I moved forward, committed myself to what would inevitably be a long wait for a dog, and attempted to intercept my insecurities before they rendered me dog-less forever.

 

More amazingly, while ACTS requires two weeks of “team training” once clients are matched with their dog, they were willing to waive the two-week requirement for me, understanding that it would be a practical impossibility for me to tear one of my caregivers away from their own families for a 14-day stay in New Hampshire. Nan asked me if I could commit to three days of training and – before even checking with Mary or Shelly – I immediately said yes.

 

So between September 1 when I got the good news from Nan, and November 19 when I was able to reserve an accessible hotel room for two caregivers, myself and my mom, I shared the good news with everyone and started trying to imagine my life with an animal who wasn’t Izzy. When I told my college students, it’s possible they were almost as excited as I was. In fact, two of my sixth year PT students offered to take me to North Conway, New Hampshire during their fall break, October 13-16, so I was able to meet Gem even before our scheduled mini-training in November.

Fast-forward to today, the Sunday after Thanksgiving. As I write this, I have a Shih Tzu on my lap and a beautiful black lab curled up on the floor next to my wheelchair. She is, as I suspected, smarter than a handful of middle school students I have taught and inexplicably loyal to a person who has neither trained her nor pet her. She has been “mine” for barely 48 hours and she has already picked my phone up off the floor and placed it on my lap after an inconvenient spasm sent it flying upside down and under the table, she has learned to “tug” the pocket door in my room open, and these are only two things that she has “learned” in a brand-new environment with people she hasn’t even known for a week. She stays in her “place” when we are eating, does not rudely beg for human food and loves to show off her ability to “go find help” when asked. My God brother’s nine-year-old daughter (with some minor assistance from me) taught her how to “tug open” the pocket door to my room, and our next task is to conquer tugging the blanket off of me at night when I am hot. I anticipate there will be growing pains ahead of us; she will test me and I might fail. I also know there is ample room inside my brain for continued self-doubt and ruminations over ways I will potentially fail as a service dog owner. But I am absolutely certain that whatever difficulties befall us in the distant or not so distant future, I will not face them alone. The team at ACTS will never be more than a phone call away, and I am looking forward to regular Zoom meetings in order to check in on both Gem’s progress and my own.

 

Perhaps most importantly, when I let her kiss my face, even when I am not disseminating pieces of cheese from my mouth as a reward, she squints her eyes and lays her ears back against her head while her tail wags and her hind end wiggles in a manner eerily similar to Izzy. When I invite her onto my bed before I go to sleep, she curls up adjacent to my pillow and rests her chin on my chest, and when I move from room to room during my four-hour morning routine, she follows at a distance before laying down nearby as if to supervise. She loves to pick things up off the floor for me, and last night even picked my mom’s phone off the floor next to the couch and placed it on her stomach as if to say, I’m willing to help you too, you know. And unbelievably, somehow, she seems to know that I am her person – at least for now. And equally surprising, I have found an almost endless capacity to love a dog with the same fervor that was once reserved for Izzy. Gem is an amazing dog, and I can’t help but believe there was a certain amount of providence involved in the two of us finding each other. Too many things just don’t make practical sense without a pinch of divinity mixed into the equation. So thank you, to all the things I implored while Gem was passing her evaluation with flying colors: Jesus and the universe and even the spirit of my precious Izzy beast. But thank you most of all to the people involved in making me cry tears of actual gratitude and joy. Thank you to the selfless puppy raisers and trainers who spent the last two years nourishing, loving and training Gem, to everyone who works for ACTS, to everyone who supported me throughout the painstaking application process, and to everyone who helped me make the arduous drive to New Hampshire in order to make this dog a part of my life. I hope she will be with me for a long, long time to come.

If anyone is able to make a donation to this incredible organization for Giving Tuesday, here is the link. I can promise your money is going to a fantastic cause.

https://www.paypal.com/donate/?hosted_button_id=WFH4LZNL8M35G 

On Dog Motherhood

Two things in my life keep me sane: gratitude and perspective. I must say though, they do not come easily – especially when browsing social media or lamenting the exhaustive list of things I wish I could still do. Being grateful and keeping perspective require consciousness and effort that I frequently lack, but – once summoned – also enable me to be mostly happier than sad. Mostly.

 

That said, I am having a harder time than I care to admit moving forward without my dog. She wasn’t directly responsible for it, but she played a major role in helping me snooze the incessant clanging of my irrelevant biological clock in my early 30s – mainly by reminding me how insanely impractical motherhood would have been for me, and also by keeping me distracted in perpetuity by antics that will forever be unprecedented. Izzy was a daily source of joy amidst a life that is – to my chagrin – overwhelmingly characterized by frustration. She was my daily activity partner and reason to be outside – even during the winter. She was filled with shenanigans that were only barely eclipsed by her fierce loyalty to me. On a particularly dark day during the first half of her life, I called my brother and asked him if he would take Izzy if something happened to me; he – apparently understanding what I was alluding to – said no. He refused to raise a dog whose very existence reminded him of the saddest thing that had ever happened to him. I’m sure that was not exclusively the reason I opted for therapy rather than the alternative, but I cannot overstate the importance of having a responsibility to something outside of myself for the last 14 years. I know with absolute certainty that there will never be another dog like Izzy in my life, ever. I also know though that she cannot be the only dog I have in my adult life.

 

Which leads me to another sticking point: my reality-based fear that no other dog will ever know me as its mom. For the first five years of is Izzy’s life I fed her, trained her, pet her, brushed her, attempted to cut her nails and walked her (or otherwise exercised her) every single day. When I impulsively picked her up at the Baltimore SPCA in 2007, she rode back to my apartment on my lap as I precariously navigated 83 S. using hand controls as she crawled up my chest with razor-sharp puppy nails. Thankfully, because of those first five years together, she knew – no matter what I could or could not do for the last 9+ years of her life – that I was her person.

 

It is that feeling, the feeling of being seen, occasionally willfully ignored, unconditionally loved and simultaneously taken advantage of that made Izzy feel like my kid. I’m not delusional, I know that she was just a dog and I will never truly know the depths of love that a mother feels for her child. And part of me actually is relieved that I will never understand that type of love, because with it comes the possibility of hurt, frustration, and – for some moms – heartbreaking loss. But with Izzy, even when she was getting kicked out of dog parks for attempting to eat her furry friends, there was one thing that I never questioned, not even once: her love.

 

A few weeks ago, as Izzy lay next to me on the floor, I decided to investigate the possibility of adopting a service dog through Canine Companions. I have a rather extensive list of needs (as one might surmise) and some of those needs could be addressed by a well-trained and loyal dog. I completed a pre-application online in order to receive an actual application for said service dog, but the website warned that they are inundated with requests and it would take 4 to 6 weeks to receive the application. Further, once approved for said service dog, the waiting list to be paired with a dog can take as long as 20 months and culminates with a two-week long stay in Long Island in order to be appropriately matched and trained together. Understandably, neither my mom nor caregivers seem super eager about the prospect of a mandatory two weeks in Long Island to complete the adoption process, which leads me – indirectly – to this blog post.

 

How can I avoid spending the next two years of my life dogless?

 

And how can I ensure – if I do not adopt a legitimate service dog – that my next dog will know I am his or her person? In my unrealistic dreams, Izzy is running wild in doggy heaven while finding her four-legged successor that she will magically direct into my life. Maybe this dog will arrive at the Tompkins County SPCA while Shelly is volunteering; maybe a perfect Kate-companion will end up surrendered in the exam room of one of my veterinarian friends; maybe he or she will magically wander into my backyard. More practically however, I know that – just as I must actively choose gratitude and perspective on a daily basis – finding my next dog will require some type of conscious work and patience that I’m not entirely sure I possess. Writing this post and opening myself to the possibility of a future that is absent of Izzy, but not necessarily absent of joy, is maybe just a small part of that work.