Apparently I was feeling a tad masochistic last week, because I decided to watch the documentary that a group of talented Poly students produced during my last year of teaching (the 2011 – 2012 school year). That a group of senior high school students wanted to make a documentary about me was at once flattering and deeply embarrassing; I was touched that these students (the majority of whom I had never taught) were aware of the hardship associated with my commitment to teach in spite of this disease, but I was by no means enthralled with the idea of capturing any of this hardship on film. Regardless, when they approached me with the idea in September 2011, I immediately said yes – how could I say no to a group of aspiring teenage filmmakers? (Although in the spirit of honesty, I was secretly hopeful they would change their minds.)
So amidst an emotionally and physically tumultuous final year of teaching – a year punctuated by monthly infusions of chemotherapy, extended periods of sick leave, and the constant frustrations associated with sharing my classes with a "co-teacher" – my struggles were intermittently captured on film. That said, I suppose it should be obvious that re-watching the documentary would not result in a happy stroll down memory lane. Quite the contrary, it stopped me in my tracks, but for reasons I did not expect.
If you are interested, the link to the documentary is attached. I somehow doubt it will have as profound an effect on you as it did on me. (Health Interrupted) The kids named the documentary after my blog, and they did an amazing job. They even won an award for excellence in documentary making, received $200 and donated the money to my caregiving needs. You wonder why I miss my job!
I remember so clearly, lying in my hospital bed at Johns Hopkins Hospital in April 2012 and reaching the conclusion that I could no longer teach. All of my resources, every last one – my money, my emotional fortitude, my determination and any remaining physical strength – they all went into my career. At that particular point of the school year, I had already hired four different live-in caregivers, I paid someone to escort me to and from school, I still paid Kristen (my first and best caregiver) to accompany me twice a week to Kennedy Krieger for physical therapy in their open gym, I depleted 100% of my sick days within my first few months on chemotherapy and relied upon "the sick bank" to pay my partial salary when I was unable to attend school, and I was a veritable physical and emotional train wreck. Lying in the Hopkins hospital bed, I mulled through all of these factors and concluded it was time to raise the white flag. Although reaching that conclusion immediately lifted an elephant sized weight off of my shoulders, it resulted in an elephant sized hole in my heart. Everything that raced through my mind in the hospital during those 10 days is now firmly associated with the memory of the dark hospital room eerily illuminated by the green lights of my IV pump. There have been significant hardships in my life with this disease, but the 10 nights I spent in the hospital wrestling with the knowledge that I needed to retire, were the darkest and most hopeless I can remember.
So why would I choose to watch a documentary that spanned nine months of my life that I'd rather not remember? I wanted to see my old students. I wanted to see my old classroom. I wanted to see if I still missed it as badly as I think I do. I do. But even that is not what catalyzed my funk. My funk was caused by something seemingly insignificant – eating a sandwich. Seriously. About halfway through the documentary someone filmed me eating my lunch and I was astounded, I could feed myself. You could tell it was not easy, but the sandwich made it into my mouth, which seemed, to me, miraculous. I actually thought, holy shit, if I could still feed myself why the heck did I need to retire? Given how much I couldn't do at that point, I knew that thought was sort of ridiculous, but it definitely ran through my head. My next thoughts turned ugly, if I have progressed so significantly within the last 3 1/2 years, what is next?
I thereby entered into a funk. It occurred to me that I very naïvely believed that when I retired in April 2012, the progression would stop. I had raised the white flag yet the assault continued. Isn't that considered a war crime? That this disease continues to ravage my body in spite of my complete surrender, seems plainly unjust.
Fast-forward to my latest disease-inspired concern: driving my wheelchair. I currently rely on my left hand to operate the joystick, and increasingly my left hand has become completely unreliable. I have a number of examples that highlight its unreliability, and many of them are actually comical in retrospect. Basically the tone (extreme and involuntary muscle contractions) in my body has become widespread and unrelenting. The tone used to be confined to my legs, but as the ravages of this disease have spread upward, so too has the tone. Certain things are catalysts for an impending muscle spasm, these things include, but are not limited to: any type of physical sensation, cold weather, wet weather, yawning, sneezing, laughing, feeling tense, stressed, excited, frustrated, happy or angry. The risk when I am driving my wheelchair is that the spasm will occur on my left arm, thereby causing my arm to straighten and push on the joystick. The straight-arm spasms have led me into more than my fair share of pickles, many of which were incredibly dangerous. Worse still, once I lose control of my arm it catalyzes a number of the aforementioned emotions that make my arm virtually unbendable rendering my pickles very difficult to resolve.
A number of these "pickles" occur on the ramp outside of Kelly's house. For whatever reason the threshold of her doorway causes enough of a physical sensation to cause my arm muscles to tense, the tension elicits panic and the panic elicits a straight-arm spasm that frequently lands me off the ramp and in the lawn (or, depending on the weather, in the mud or the snow). A few months ago we reached a breaking point and Kelly, as she attempted to extricate my 400-pound chair from the mud, said something along the lines of, "enough is enough, you need a new way to drive your chair." There was absolutely no ill intent behind her words, but they hit me like a cattle prod to the heart. Kelly's point was simple: I need a way to drive my chair that doesn't elicit 600 negative emotions on top of an ever increasing number of perilous pickles. So why, one might wonder, did her words hurt so badly?
Her words stated the obvious. I have gotten worse. Again. This was not a surprise. This was as predictable as Ithaca's interminable winters. And once again I will need to make yet another modification to the way I navigate the world. The progression didn't stop when I moved home, and it's making no promise to do so anytime soon. I cannot digest this truth, I cannot even so much as accept this truth and sometimes it literally robs me of my ability to breathe.
Nevertheless, the following Monday I called my wheelchair vendor, and the week before Christmas he and two other wheelchair guys came to my house to teach me how to drive with my head (they were remarkably poor teachers and I ended up putting a foot-long hole in the kitchen wall). Nonetheless, I am grateful, truly grateful, that alternative options exist and I will still be able to drive myself without the constant assistance of others. I am grateful that Medicare will cover yet another expensive piece of equipment that I do not want but absolutely need. I am grateful that – once I get used to the new contraption – I will not find myself in pickles that inspire negative emotions, put me in danger or necessitate my girlfriend to lift a 400-pound chair out of the mud. But, to put it bluntly, it still sucks.
And all the while I am stuck on this: just 3 1/2 short years ago I could feed myself a sandwich.
Tuesday, November 10, 2015
I cannot stand having my time wasted. Even back in my college days, my four-year roommate and best college friend, Megs, and I would share tortured looks and a mutual disdain for any situation that could be retrospectively described as a waste of time. Once I started teaching I would sit through faculty meetings or professional development workshops and think, I could have graded 50 essays in the time it took us to discuss the size of purses that students should be allowed to carry in the halls. I would doodle in the corners of common core handouts and jot down ideas for lesson plans or my grocery list for the week's Whole Foods run. I would do almost anything to avoid feeling like any amount of time in my day had been wasted.
Which is why (among many other reasons) the progression of this disease has been such a giant f--k you. This disease is the most astronomical waste of time to myself and to everyone around me that I could ever even fathom. I would like to, for the point of helping others understand, chronicle a day in the life of Kate Hooks.
Last Sunday, I woke up shortly after 7 o'clock. I tried to relax and fall back to sleep but my efforts were fruitless so I was up and on the toilet by 730. An hour later Kelly had me dressed and in my chair, and we had plenty of time to head up to my parent's house to walk my crazy dog before my caregiver arrived at 11. It takes about 20 minutes to get from Kelly's house to my parents', and by the time Kelly went in to grab my dog, chatted with my mom and put Izzy's leash on, it was already almost 10:30. We went for a short walk around the neighborhood and by 11 o'clock Kelly left for a run. While she ran, I showered, ate breakfast, got dressed and brushed my teeth. She was back from her run by 12:30 but by the time we actually left my house it was close to one. Think about this for a second, we had both been awake since 7 o'clock and six hours later I had showered and gotten changed and she had gone for a run. If she had run a marathon and I were a Kardashian, then maybe, maybe I could understand how going for a run and taking a shower/getting dressed might necessitate six hours. As it stands however, it is just a tragic waste of time.
The two of us lamented the facts of the situation as we drove another 20 minutes back to her house. If we lived together in an accessible house, a caregiver could have had me up, showered and dressed by 9:30. A caregiver could help me walk my dog around Kelly's neighborhood and could even take me to run errands. While I accomplished these tasks, Kelly would be free to run, rake the leaves, mow the lawn and hopefully have some time to relax before the end of the day. As it was, however, we pulled in to Kelly's driveway at 1:30, only to discover shortly thereafter, that my belly button had leaked urine all over my sweater, my long sleeve shirt, my underwear and my favorite pair of jeans. This was strategically discovered only seconds after Kelly and I begrudged the absolute inefficiency of our weekends together. Without so much as a warning, the familiar scent of urine penetrated my nostrils before I was even out of the van. When I articulated that I smelled urine, Kelly hopefully replied, "maybe it is something on Truman?" I knew full well there was nothing on her dog that could possibly mimic the scent of me peeing my pants. By the time we were in Kelly's living room, I was soaking wet. Nothing makes me want to throw myself on the floor in a fit of rage more than a leaking bellybutton. (Especially less than an hour after a shower.) There is the obvious fact that I do not enjoy sitting in my own urine, but beyond that, the implications are maddening.
Since throwing myself on the floor in a fit of rage was not a viable option, Kelly and I elected to deal with the problem head on. Kelly was somehow able to summon otherworldly patience and methodically address the issue. She helped me into a shaky, tone-induced stand, stripped off my saturated pants etc., sat me back down onto a towel, cleaned me off with Charmin wipes, put me in a pair of her (too short) scrubs and a T-shirt and traipsed to her basement to do a load of my urine soaked laundry while I sat in her living room and started this blog. When situations like this interfere with our ability to just enjoy each other's company, my mind becomes a veritable maze of negativity. Much of the negativity is directed towards my body, but there is an underlying current of inadequacy and insecurity woven throughout that quite literally contaminates my entire thought process.
Sunday, November 01, 2015
On making plans
So while it does not rank high on the list of things I miss that this disease has taken from me, impulsivity is a highly underrated characteristic. With the holidays looming, my need to plan intensifies and my frustration nears its boiling point, so if I ask you what your plans are for New Year's and it is not yet November, feel free to roll your eyes but, for the love of God, just answer the question.
There were times in my life I described myself as impulsive. Those times are over. I suppose in the grand scheme of things that I have lost over the last 18 years, losing my impulsivity wasn't too traumatizing, but when I really think about the impact of this loss, on both myself and on the people around me, it becomes just one more thing in a series of things that makes me want to stick my head in a blender (I used to say that all the time when I was teaching: "I'm sorry I cannot focus on your question kiddo, there is so much background noise right now it feels as if my head is in a blender" or, if the class was particularly annoying I might say, "guys, if you cannot follow directions I am going to stick my head in a blender"). But yes, at times the loss of my ability to be spur of the moment does indeed make me want to stick my head in a blender.
Some cases in point: the weekends. The weekends are my time to spend with Kelly. Depending on her work schedule, we spend about 2 1/2 days together a week. However, also depending on her work schedule, she has three days to get her own stuff done. (Someone recently referred to this notion of "getting stuff done" as adulting, doing things that no one particularly wants to do but that all adults need to do – laundry, dishes, yard work, errands, etc.) in a normal relationship, partners can adult whenever they want: perhaps together, perhaps while the other partner is sleeping or otherwise engaged, or maybe they do their adulting simultaneously and separately. Regardless, when Kelly does her weekly adulting, which, because of her schedule, needs to happen over the weekends, what does she do with me? Does she do it while I am getting ready on Friday morning? Does she adult with me and have to worry about locking down my chair in between errands? Does she leave me attached to my computer in the comfortable chair in the corner of her living room while she adults? All of those scenarios have happened and they all have worked out perfectly well, but they all – every one of those scenarios – require planning.
Ages ago, before Izzy became an aggressive dog, I took her to the Baltimore dog park on afternoons after school. There, as she ran around getting her energy out, I would chat with other dog park regulars. One afternoon I was griping about having to go to the grocery store after the gym, and one of my dog-owning friends remarked, "that sucks, so you have to get your wheelchair out and put it together just go in for eggs and milk?" I replied in the affirmative and was amused by her response, "man, that's got to be even worse than carting a toddler around!" Although that scenario is no longer relevant because I can neither drive myself to the grocery store nor assemble (or use) a manual wheelchair, drawing an analogy between my disease and an unruly toddler seems somewhat apropos. I am a hindrance to adult with, and a responsibility to adult without. Just as you cannot leave the toddler at home unattended, I am a potential hazard when left alone. I can assure you I will not "get into" anything or stick my hand in the wood stove, but my proclivity to find myself in a pickle is almost without limit. At the very least, I need reliable access to my cell phone before conducting myself independently for more than 15 minutes.
Understandably having an in-depth plan for the weekend's adulting, let alone a minute-by-minute schedule for Friday through Sunday, is not always at the forefront of Kelly's mind at the conclusion of a 50-hour workweek. And I do not feel like badgering my already badgered girlfriend, but unfortunately, even without adulting, my life requires a lot of advanced planning: how long should my caregiver stay on Friday afternoons? Will I need my mom's help at any point or can she make plans? Do I need my college students to work over the weekend? Should we have a college girl come to Kelly's house on Friday or Saturday to help me with my nightly duties? If so, what time will we be home from whatever it is we decide to do? What about my dog? Will we have time to take her for a walk or play ball with her? What time should I be home on Sunday?
And don't even get me started on the holidays when my college girls are out-of-town for six weeks. Over the holidays I need to call in reserve caregivers so I need to know what days I will be at Kelly's and what days I will be at home needing someone to get me out of bed. This is a reality I could do without, but it exists nonetheless. As a consequence, I am micro-managerial to the extreme; a characteristic that I am well aware is excessively annoying. When one creates a dating profile for an online dating site, one will never list "micro-managerial" or "controlling" under the adjectives that describe me section.
Tuesday, October 27, 2015
Since we were already on the topic of relationships…
Kelly and I had a very enlightening conversation last Friday as we drove around Keuka Lake taking pictures of beautiful fall foliage. I told her my perspective of how outsiders view our relationship: that I am pitied and Kelly is viewed as a hero, as someone who is doing a great service, as the white knight who selflessly has taken on a project such as myself. Kelly's view is the exact opposite: that I am perceived as the hero of the relationship, as someone "inspiring" who bravely pushes through boundaries in my motorized wheelchair. She says she feels invisible and that, at best, people think nothing of her at all. Something tells me that both of our individual perspectives are wrong and that the truth lies somewhere in between.
Monday, October 26, 2015
Of all things I have done throughout the last 18 years with multiple sclerosis, being in a relationship is proving to be among the most difficult. I wrote a blog about a year and a half ago where I posited that I might never have a crush again, and I might never enter into another relationship because my "forever after" seemed so scary. I was defeated when I wrote the blog, deeply and profoundly sad. I was unable to determine what was harder: living inside of my body or dealing with my almost palpable sense of loneliness. I felt at that moment like I could live with one or the other, but not both. Both were suffocating me.
Shortly after I wrote that blog, I entered into a relationship. A relationship that was at once completely unexpected and completely inevitable. A relationship with my closest friend. Someone who knew both the intricacies of who I am and the complexities of the body I live in. Someone who, against all of her rational judgment and common sense, managed to fall in love with me – disease and all. At the inception of this relationship I felt an explosion of hope that I have not felt in decades. I believed that our love could conquer anything. There was a renewed sense of strength inside of me, as if my previous structure of fortitude that had long since been destroyed had been rebuilt. I believed our relationship could survive anything.
18 months later it truly has: it survived a weeklong stint in the hospital where I was on a ventilator in the ICU for three days, it survived an intensely and unnecessarily dramatic relationship with a previous caregiver, it survived the euthanasia of her best friend, Finnigan (the most perfect dog in the world). Our relationship has triumphed over more trials and tribulations throughout these 18 months than most couples encounter in 18 years. But I do not think that either one of us has escaped from these difficulties unscathed. In many ways I think we love each other more deeply than we ever did, and in other ways I think this relationship has taken a toll on each of us that neither of us could ever have anticipated.
I cannot hug her. If I want to take her out for dinner she needs to drive and she needs to feed me. If we want to go out of town for the weekend she needs to help me shower, get me on and off the toilet (and help me with everything in between), floss my teeth, scratch my nose, carry me out of my chair and into the bed when the day is over and carry me out of the bed and into my chair when the next day begins. But all of that only happens if we are able to find accessible accommodations to begin with – no stairs, wider doorways, a roll in shower and enough room in the bathroom and the bedroom for a motorized wheelchair. Meanwhile, on a daily basis I cannot even take a sip of water without her. Truly my needs are constant. And despite my effusive appreciation, and my absolutely enduring love I cannot even touch her face, put my arm around her, hold her hand or rub her back. I cannot cuddle, brush her hair out of her face or reach out and touch her reassuringly if she starts to cry. And those are the small things. I cannot help her chop firewood, stoke the woodstove, wash the dishes or cook meals. I literally cannot do anything. Imagine that. Imagine receiving love from someone with the physical capabilities of a mannequin. It would take a toll on you. And despite the fact that in this scenario I am the mannequin, it certainly takes a toll on me.
I think in a relationship like this honesty is extremely important. But there are two instances where honesty is not the best policy: 1) when she says something like "I wish you could put your arms around me" or 2) when I express my sense of inadequacy (which I am tempted to do with great frequency). I know that our relationship has so many seemingly insurmountable challenges, and I absolutely cannot imagine dating someone with my level of physical limitations, but I also know that in order for me to stay afloat in my quagmire of insecurity it does no good to hear about what my partner wishes I could do. Kelly understands this now, and she respects it, but I know that underneath her silence, sometimes the frustration remains. In the same vein, it does no good for me to articulate my repetitive fears of inadequacy, why are you with me? How can anyone be happy with me? Insecurity is so unattractive, and Kelly reminds me often that one of the things that attracted her to me in the beginning was my confidence. Honesty is of utmost importance in any relationship, but – as I've learned – some things are okay to save for my therapist.
Even my therapist, however, can't convince me that I am worthy of this relationship. That job is mine alone. So I took to the Internet in search of other people's stories with the firm belief that I am not the only person with a serious disability dating an able-bodied person. Granted I am not the best Internet searcher in the world, but I was unable to find one anecdote written from the perspective of the partner with a disability. I found some great blogs written by able-bodied partners of quadriplegics, articles with advice for caregivers, and a number of informative sites about "sex after spinal cord injury," but nothing about what it feels like to be the partner who cannot show affection. (Please feel free to point me in the direction of any blogs or articles that explain how to cope with being the inadequate partner.)
I know that right now there is a major need for me to shift my paradigm. I need to change my expectations of what a worthy partner should provide in a relationship. I do feel, however, that this is a paradigm Kelly and I should redefine together. Currently our relationship is so unbalanced and unfair which leaves me constantly on edge: when will my next request break the metaphorical camel's back? And despite the fact that my needs are so frequent, I honestly do try to prioritize what I ask for – just focus on something else and the itch will pass, just let the snot drip, nothing bad will happen if your nose runs into your mouth, stop, please stop that thinking about your uncomfortable left leg/behind/elbow etc. Sometimes it seems the only words out of my mouth start with "would you mind…" Or "will you please…" I am not exaggerating, it is constant; how then can I contribute to this relationship? And how can I prevent myself, as my eyes itch and my nose runs, from resenting the able-bodied love of my life who can so easily tend to her own needs? There is a large risk that my dueling emotions of guilt (that leads to insecurity), and resentment (that leads to bitterness) will converge and supersede the characteristics that make me who I am.