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 timeit took us to discuss the size of pursesthat 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.
Inexplicably, both Kelly and I were able to move beyond our frustrating morning-turned-afternoon. Once the laundry was finished, Kelly changed my clothes once again, and we were able to enjoy dinner with a friend before traipsing back to my parent's house on Sunday evening. A few days later, however, as I finish this blog while she works another 13-hour day, I am left with an immense sense of defeat. No matter how much I think about the complicating factors in our relationship, I cannot manage to come up with any solutions. Until we are able to live together I fear our relationship will always feel truncated; artificially shortened by circumstances that necessitate our continuous segregation. Kelly and I decided that we need some sort of plan in place by January 1, a plan that will minimize the back-and-forth nature of our relationship and will enable us to see one another more than twice a week. I yearn for such a plan: I yearn for a way to afford caregivers for all of the hours in Kelly's crazy workweek, plus the evenings and weekends, and I yearn for a way to make her house more Kate-friendly. Despite this yearning, however, I am still finishing this blog at my parent's house, while looking forward to another weekend with Kelly that will inevitably be interspersed with periodic bouts of inefficiency that remain completely beyond my control.