Monday, March 30, 2015

Why I never made it to the last Cornell hockey game

I have contemplated what the "best case scenario" might look like from the vantage point of someone in a motorized wheelchair, and though there are days when things are far from perfect, I do realize that I am incredibly lucky. I have a better emotional support system than I probably deserve, I live in a beautiful and accessible house with two supportive parents, I own an accessible van, and I have found a number of excellent caregivers. What I do not have however, is a dog–friendly dog. And what makes my dog even trickier is that she is completely inconsistent. She is angelic with my mom's two little dogs, she is great with my brother's goldendoodle, she adored my old dog walker's little Chihuahua, and despite a minor snafu (which resulted in a small amount of bloodshed), she was best friends with my old roommate's pit bull mix, Sadie. However, despite her occasionally saintly behavior, she also has sent more than one dog to the vet's office, has been kicked out of more than one dog park and will never, ever, even on her best day, be considered trustworthy.

So what to do about the fact that my girlfriend owns Truman, the most precious Boston Terrier in the history of Boston Terriers? It took months, but Kelly and I thought we had a solution: get the two used to each other while Izzy wears a muzzle, keep them separated, and always keep a sharp eye on both of them. After a few weeks, Izzy graduated from a muzzle to a snoot loop and shortly thereafter from a snoot loop to just a collar and leash and eventually to well supervised freedom. Kelly and I were cautious, but it seemed that my dog respected Kelly enough that she was remarkably tolerant of Truman. Fast forward to the last weekend in February. Izzy and I had just arrived at Kelly's house and Izzy was quietly chewing a stuffed snake. Truman walked over, sniffed the snake and unknowingly incited chaos. Before Kelly or I could even say stop (or no, or leave it, or any type of command), Izzy's teeth attempted to pulverize 15 pound Truman. Kelly descended upon the two dogs with the speed and direction of a superhero and managed miraculously to protect Truman from any serious harm. I cannot provide any sort of detailed account of what happened from that point forward, because I think I went into a semi-conscious state of shock, anger and fear. All I know is that at the end of the attack, Truman was fully traumatized yet miraculously uninjured, Kelly was bleeding and Izzy, completely unfazed, returned to peacefully chewing the stuffed snake (I am pretty sure such behavior qualifies her as a legitimate sociopath).

Things I never again want to hear out of my partner's mouth include: "Look Kate, you can see my muscles moving under the skin" or  "Wow, I think that is a tendon". How would able–bodied Kate have responded? Hopefully I would have gone into triage mode and put Izzy in the crate downstairs, checked Truman for any puncture wounds and drove Kelly to the hospital. As it was however, all I could do was stare in shock and disbelief, tell Kelly that we had to get to the hospital and try to stay as calm and still and un-needy as possible.

This was completely new territory for me. I am unfortunately used to dealing with the limitations of my disease and its effects on family, friends and caregivers. I am not, however, used to seeing its effects on my partner. I have no idea how to reconcile my vision of the partner I want to be with the partner I am. I want so thoroughly to be helpful: to do the dishes after she cooks, to vacuum after one of the dogs pulls all of the stuffing out of a toy, to help her fold the sheets or do the laundry or clean the toilets. And above all the routine duties I wish I could help with, I want desperately to take care of her when she is sick or, in this particular case, when she is suffering a ligament–exposing bite wound imposed by my dog.

But, I cannot. Instead I remained quietly in the wheelchair, and watched as she took Izzy to the crate downstairs. She checked Truman over for bite marks and eventually, once convinced that he was okay, we headed slowly to my van. En route, I tried carefully to stay on the ramp despite a treacherous coating of ice. Right before reaching my van's slightly less slippery metal ramp however, I felt my back wheels start to spin out and slide, in slow-motion into the snow. So much for my attempt to be unneedy, I thought as Kelly struggled to push my almost 400 pound wheelchair out of the snow and onto the sidewalk with one hand (her second superhuman feat in a 10 minute span). Once safely in the car we proceeded to the hospital's emergency room to begin our Friday evening of waiting. Hopefully, I suggested, we might still make it to the Cornell hockey game at 7:30.

Sitting in the waiting room I felt the subtle but insistent need to pee. As I'm sure I once mentioned in an earlier blog, I do not pee like a normal person. I had a fancy surgery in 2010 that used my appendix as a conduit between my bladder and my belly button and now I can catheterize through my belly button whenever I have to pee (Information here: Mitrofanoff_appendicovesicostomy). Unfortunately though, without functioning hands, someone else needs to set everything up and with Kelly's hand still bleeding profusely I did not want that someone to be Kelly. So I pushed the urge to the back of my head and decided to wait until we were finally out of the hospital's lobby and in an actual treatment room. Of course, once that happened I was more focused on whether or not Kelly needed stitches or had any broken hand bones and completely forgot about my need to pee. As it turned out, ignoring the urge was easy to do because unbeknownst to me, my belly button had taken matters into its own hands and leaked all over the waistband of my jeans, my tank top, my sweater and even my scarf. My entire torso was soaked in urine.

I cannot emphasize enough how angry I was with myself (I should have known by now not to hold it) and with my body (my belly button is supposed to function as a continent stoma, not as an incontinent stoma).  Despite my protests, Kelly insisted on changing me out of my saturated sweater in the small treatment room while we waited for a radiology technician. Her intentions were good, she wanted me out of my urine soaked clothes, but pulling the sweater over my head while I was holding a rapidly filling urinal proved disastrous. When she leaned me forward I proceeded to dump the entire half full urinal all over the floor of the hospital room. At precisely that moment, as I sat in a pool of my own pee, wearing only a bra and urine soaked jeans, the male radiology technician entered the room to escort Kelly to her x-ray. Awkwardly, he glanced between Kelly and me, nervously checked his clipboard and mumbled, "Umm, let me give you guys a minute." My brain was somehow able to bypass embarrassment and go straight to guilt.

I felt like typhoid Mary. Unknowingly destroying everything in my wake – first with my dog, then with my wheelchair and finally with my bladder.
Clearly we never made the hockey game.

Thankfully Kelly suffered no broken bones and avoided an infection.

Izzy was quarantined for 10 days by the Ithaca health department. Rabies–free, it was unofficially concluded that she is a psychopath.

Izzy will likely never again spend time with her little brother unmuzzled.

Truman will likely never again be able to relax or enjoy his life with Izzy in the vicinity.  Muzzled or not.

Considering the size of my dog, I realize that things could have been much worse. But I am left with one vital question: how can I properly protect and take care of the person I love? Thinking back to the blog I wrote months before embarking on my first serious relationship in over a decade, I wonder if my decision to be someone's partner was fair. Kelly once told me that people make decisions out of fear or out of love and that I should always choose love. I did. And I would do it again. But when Kelly is heaving my wheelchair out of a snow bank with one hand I cannot help but wonder once again, is my love really enough?

Saturday, March 28, 2015

The first week of spring. Some thoughts.

Even in the absolute best of circumstances, life with this disease would still be incredibly challenging. Let me imagine just for one second what the best of all circumstances might look like: limitless supplies of money, enough caregivers to ensure that no one person ever gets sick of me, a personal chef to deal with the challenges of the Wahl's diet I am on, a housecleaner and a personal assistant. My personal assistant would have one of the worst jobs ever: he or she would manage my finances, schedule my appointments, deal with health insurance and Medicare snafus, run errands, file my paperwork and organize my life in full. Above all, the best of circumstances requires a rock solid emotional support system. Additional perks should include, a fully accessible house (bathroom included), an accessible vehicle and a dog friendly dog. Even then, even if I somehow found myself in a disabled persons utopia, I would still feel like a prisoner in my own body, I would still watch strangers move with a seething and suffocating jealousy and I would still feel a noose tightening around my heart every time I passed the high school track.

And though I have said it before I will say it again: the notion that time heals all wounds is a fallacy. With a progressive disease like mine, time is not a friend. Time enables nothing more than the lesions that currently exist in my brain to cause further, irreparable damage to my nervous system. Time actually depletes my hope because as my level of disability increases I know the chance to reverse the damage decreases. For the past almost 18 years my doctors fought aggressively to stop the progression so that one day, if there ever were a cure, my body would not be too far gone to reap the rewards. Unfortunately though, despite everyone's greatest efforts, no one has ever been able to push a pause button on my progression: not the multitudinous immunomodulating drugs, not the immunosuppressive drugs, not the human immunoglobulin, not the experimental treatments and most definitely not the chemotherapy. My disease is stronger than the strongest of medical treatments, the smartest of doctors, the savviest of acupuncturists and the most stubborn and determined of patients. It is even apparently stronger than God because more people than I can count have been praying for me since the day I was diagnosed.

I have never accepted this disease lying down, I have done every single physical activity that I could with as much vigor as possible from the confines of this body; I taught myself to swim and once I could swim more than 50 meters without fearing I might drown, I taught myself to love it. And now from the uncomfortable seat of my motorized wheelchair, I question almost every single thing that I have done or haven't done along the way: did I drink too much alcohol in college? Did I overdo it in the pool over the years and overheat my body too much? Were my first several years of teaching so stressful that I contributed to my own demise? Did I anger God along the way? Did my body need more sleep than I gave it? Is my faith not strong enough? Did I wait too long to try this crazy diet? Did I give up on one of the experimental drugs too soon? Do I need more human immunoglobulin? Why did I ever try chemo? Should I have stayed on chemo longer? What about physical therapy? I did super intense physical therapy in Baltimore, should I have started that sooner? Should I have fought harder? Did I fight too hard?

I can literally drive myself insane with all of these questions. Especially knowing that I ignored some pretty serious gut feelings along the way. What I've learned however is that a negative gut feeling feels remarkably similar to nerves and what sane person would not fear chemotherapy? Regardless, I had something that I can retrospectively identify as a clear "bad feeling" before I started the chemotherapy, and what did I do? Ignore it. Of course there is no guarantee, I could be worse off right now had I not gotten the chemo or tried the cocktail of pharmaceuticals that my doctor offered me. I might have progressed faster had I not swam a mile a day for years, and who knows what could've happened to me if I worked at a soul sucking desk job instead of as a stressed out but 100% fulfilled teacher. The questioning, the second–guessing and the self blame never end. They. Never. End.

So why did I bring this up? I guess because I just want someone to understand that sometimes it just sucks and there is nothing anyone can do to make it better. Please do not remind me of everything I should be grateful for; please do not tell me that I am loved; do not try to convince me it will be okay; and please, please do not remind me that things could be much worse. I already fear that on a daily basis. Every once in a while I am just sad and I need a little bit of patience. I absolutely appreciate my friends and my support system and my family and the beautiful accessible house I live in. I appreciate my girlfriend and the fact that she has single-handedly infused more hope into my life than I have felt in over a decade. I love the fact that I truly do not feel alone in the struggles against this disease and that I have people on my team willing to help, willing to figure things out, and willing to support me when I am at my worst. Unfortunately however, despite all of this, sometimes I am still sad. Especially when it is beautiful outside and all I want to do is go for a run.