|At the fundraiser|
Trying hard to function in spite of my foul mood, I took Izzy to Whole Foods this morning. I was hungry and she needed a walk. The place, when I finally arrived, was teeming with people, and it was literally impossible for me to keep myself, and my new mechanical wheelchair out of the way. I unsuccessfully dodged people, and finally ordered my dark chocolate mocha and selected a blueberry scone; a treat for surviving the week. I checked out and brought my food and my coffee outside into the cold December air to eat with my dog. As I shared my scone, strangers walked by and commented on how well behaved she was, as if she had not eaten a cardboard box containing garbage bags just hours earlier. Once the scone was gone (save for the impressive array of crumbs all over my scarf), I returned to the store, threw the garbage out and put my mittens back on. Unfortunately, the latter was easier said than done. My fingers were so immobilized by the cold that they would not cooperate and a task that should have taken one minute took ten. It was then that all of the emotions I had successfully repressed during the week suddenly resurged. I grabbed ahold of my mitten cuff between my teeth and gave one final tug to pull it over my wrist and then discovered a significant number of woolen fuzzies in my mouth. So as I sat there trying to decide between removing my mitten to extract the fuzzies and just dealing with a mouth full of fuzzies, an embarrassing amount of tears squeezed out of my eyes and down my cheeks. I felt on the verge of a proper two-year-old temper tantrum, I CANNOT PUT MY OWN (EXPLETIVE) GLOVES ON! What the hell am I doing here? Feeling my face get hotter and hotter I left the fuzzies in my mouth and returned outside to get my dog.
Once Iz and I were on our way, I tried really hard to categorize the myriad of frustrations behind my tears. They were as follows:
- My friend Lena organized a beautiful fundraiser for me on Wednesday of this past week. It was amazing. Within one week she managed to book a venue, find two bands to donate their time, convince the bar to donate 15% of their proceeds from the night to me, and invite over 100 people to the benefit. The turnout was particularly impressive, because my caregiving fund is not an official 501(c3), and as such donations are not tax deductible. The fund is a privately managed account that—thus far—has allowed me to maintain my independence, even as my physical needs are ever increasing. The benefit was flawless and Bistro Rx was filled with people who came for no other reason than to support my stubborn refusal to quit my job.
- As Iz and I scooted along I realized why, despite the heart-warming amount of people who filled the bar, I still felt defeated. Because even though the place was filled with members of the staff from City College, a school I taught at over six years ago, I was pretty disappointed that only seven people from my current school were in attendance. Seven. It was actually embarrassing. Even worse: not one of those seven people was from my own department. And though an additional five people donated to me in spite of their absence, none of those people were from my department either. I felt, once again, like nothing more than a hassle to my department. It’s frustrating too, because I know that I'm good at what I do. More importantly, I know that it is valuable for my students to see my dedication to them. It’s without question that my work requires a ridiculous amount of effort – and I think they get that. But don't misunderstand me, I don't teach because I want to be some sort of great white hope in a wheelchair, I teach because I love history, I love my students, and I seem to have a gift of making the mundane slightly less boring than your average history teacher. I also firmly believe that education is the key to success in a relatively cruel world; maybe not ultimate success, but the key to the option for success. Lest I bore you as I wax philosophical about education, my confidence in my job makes me even more hurt by my department.
- I thought back to our department meeting earlier that week. It started off on the wrong foot, because my department head decided to start the meeting fifteen minutes earlier than his email had stated, but no one bothered to tell me. I teach on the first floor, and the rest of the department is located on the third. You would think that I taught in a different school entirely based on the lack of communication between us. It’s almost as though they are not all able-bodied enough to walk down the two flights of stairs to keep me in the loop. In fact I thought about reminding everyone at the meeting about the fundraiser later that night, but I didn’t feel like dealing with disappointment if they weren’t interested. Besides, everyone had already been invited. So I kept my mouth shut at the meeting and seethed silently when no one showed up.
- Another painful memory resurged as Iz and I trekked past the Science Center and passed what seemed like 600 runners. I guess if you have read my previous blogs you understand why passing runners is not my cup of tea to begin with, but on this particular afternoon the runners reminded me of another part of the fundraiser. One of my old City colleagues told me about her neighbor. Apparently the neighbor is in her early 30s and also has MS. She wanted to know if I would be comfortable talking to the girl. I am always a little bit skeptical about plans like this, mainly because I assume that another person with MS who sees me will be scared shitless. I have had a particularly aggressive case of this disease, and am worried that anyone diagnosed with MS will immediately visualize their life in my shoes – and they are not fun shoes to live in. I expressed this fear to my old colleague, and she assured me that her neighbor would not do that. As my colleague explained, the girl was apparently diagnosed in her teens and thus started treatment immediately. Consequently, she is still able to run and do yoga. My colleague never even knew that her neighbor had MS until a recent conversation. I tried really hard to maintain my composure at this point, and said: “Interesting, because I too was diagnosed at 19 and started treatment immediately, but clearly I am not running or doing yoga." Instead I am sitting at my own fundraiser so I can afford to pay people to help me shower in a ridiculous motorized wheelchair.
- So, the memory of this conversation, sparked by the runners around me, was reverberating throughout my brain like a racquetball in a racquetball court. The whole thing made me want to punch Jesus in the face. And my doctor too. In no particular order. Seriously? You are telling me that one of these people running on the harbor on this sunny, brisk December day might have had this disease for as long as I have? It made no sense. I have tried everything. So has my doctor. I have literally tried so many medical treatments that my doctor told me that he could write a book about me. And yes, I have tried all types of crazy naturopathic things as well. I have done acupuncture, I have changed my diet, I have tried hypnosis, I have done physical therapy, I have done occupational therapy, I have done Reiki therapy. I gave up alcohol – starting when I was in college – more times than I can count. I have always been physically fit and as active as possible, but it has all been to no avail; shit just keeps getting worse. I started on Copaxone when I was 20. I was on a high dose of Imuran, got steroids every four months, then switched to Betaseron, was put on Cellcept, got monthly infusions of Immunoglobulin, had two doses of plasmaphereses, six months of Tysabri, a blast of Rituximab, tried more Betaseron, some Gylenia, and now I am trying monthly chemotherapy. All throughout there have been brief periods of stability, but a general trend of downhill progression. So yes, I am slightly bitter and not too keen on commiserating with a fellow MS patient who, after 15 years of the disease, is still running and doing yoga.
- On this particular day then, I guess I was more sad than usual. But here’s the thing: when I go back to the question, “why am I doing this,” I still see my students. And don’t get me wrong – there are days when I really do want to run a few of them over with my car. But overall, they are pretty freaking amazing. Amazing enough that they make up for a department that sees me as more of an inconvenience than an asset. The day after this fundraiser, in fact, I managed to smash into my desk with my power chair and get the top of my armrest stuck beneath the top drawer. I was humiliated when I hit the desk and even more humiliated when I tried to back up quickly and realized the bottom of the desk was stuck on the armrest. As I backed up thus, the entire desk began a slow motion descent off of the platforms that were placed there to prevent this from happening. On top of the desk was my relatively new MacBook attached to the LCD projector, and every one of the three sets of copies that had been made for all of my 135 students. Too late to prevent the inevitable, as the desk crashed to the floor, rather than point and laugh – as I would have done at 14 years of age – my students got out of their seats to help me. A boy in the back of the room made it to the desk in a split second and managed to catch my laptop seconds before it hit the ground. Meanwhile, all of the other students picked up the binders and all of the pieces of paper that were now lying scattered on the floor. All I could do was sit there: horrified, face flushed, feeling like the temperature of my classroom was well over 100 degrees. I was speechless; mortified at myself and unable to articulate how grateful I was to my kids. Not one of them so much as smirked.
So I guess that is the point of this blog. Despite the fact that this disease sucks, and it took me 20 minutes to put on a pair of mittens in the grocery store, and I cannot run, and I am increasingly hurt by my department, and I spent 45 minutes of a walk with my dog with fuzzies in my mouth – I still genuinely love my job. And until that changes, I am going to continue paying caregivers and searching for a perfect roommate. So if you know of any angel type person who is looking for a roommate in the Baltimore area, and would not mind cooking, cleaning, and helping me with pretty much everything I need to do in my apartment, kindly send her in my direction. I happen to think my dog is awesome enough to make up for all of the help I need, even though she does have a particular affinity for paper products. And if that is not enough, I can also throw in a pretty sweet deal on the rent. If you don’t know of any such angel, then consider making a donation – I am currently paying more for help than I make in a salary. And I am not yet ready to leave all of this behind. Not yet.
(This blog was written thanks only to my friend, Meli. In addition to listening to this rant first-hand, she also typed this entire story based on audio-recordings that I emailed her in paragraph installments. For me, dictation software is more of a catalyst to a meltdown than an instrument for my catharsis. Thank you.)