- I had an MRI a few weeks ago. The results could have gone one of two ways: no new activity, or new disease activity. I was hoping for the latter. If the recent worsening were attributed to the preexistent lesions, that would merely indicate that previous lesions were leading to atrophied neural circuits (am sure that last sentence is scientifically wrong, but it sounds better than how I usually characterize progression: "old shit is shriveling up and dying.")
- So I laid in the MRI tube for almost two hours while I should have been at school and tried to will an active lesion to appear in my brain.
- It worked: I have a brand new active lesion in my left frontal cortex. In the short-term I was psyched: active lesions can be treated, whereas when old shit dies it is dead. End of story. I started five days of IV steroids the following evening and took the next week off from school to rest and recuperate.
- Other than the emergence of about 700 new zits and a complete inability to sleep, though, the treatment that I'd mythically touted as potentially helpful didn't do a damn thing. Like nothing. Wait, I'm lying; it suppressed my immune system catalyzing a serious UTI. My arms are still weak, my fingers are clenched when I wake up, and my body yearns to exist in a constant state of rigor mortis. I cannot will my hands to properly hold a tissue up to my nose, and cannot -- for the life of me -- get enough strength behind my lungs to either cough OR to blow my nose. Am trying not to think about any of this, but as I cannot find a way to get away from my own body, distractions are few and far between.
- In the meantime, I have never, ever felt so alone in my entire life. I love this city, and my job (obviously). I love my doctor and the proximity of my current apartment to both Johns Hopkins and the amazing physical therapists at Kennedy Krieger. I also love the grittiness of this city; there are no pretenses in Baltimore -- it is what it is. You can go to a fancy restaurant wearing sneakers, you can fall out of a scooter while "walking" your dog and two homeless men will pick you up without asking for money.
- But. (Here it is...) I have no emotional support system here. There are days that go by where I have to remind myself to keep breathing, and the only people who seem to notice how sad I am are 14 and 15 years-old. I just got back from a short trip to Seattle, and it dawned on me that I have to fly 2,300 miles to let go of the guilty feeling I get every time I ask someone for help. I can almost feel people wince when I say their names; I imagine them thinking to themselves: Lord, what now? How many Kate-astrophies can she have in a day? I don't feel like that in Seattle (probably because I'm not there often enough to feel as burdensome as I do in Baltimore). I also don't feel like that in my classroom (which is only part of the reason I'm fighting tooth and nail to keep my job).
- The girl I hired to help me get my pants on in the morning is a Rock Star. She does far more than help me with my pants, obviously. I recently introduced her to a therapist at Kennedy Krieger as my personal savior. Some people have Jesus, and I -- at least while my faith is on (what I hope will be) a temporary hiatus -- have Kristen. Kristen is 27 years-old, 5'8" and maybe 120 pounds soaking wet; I was consequently skeptical of her ability to deal with my surprisingly combative rigor-mortis-esque, more-than-120 pound body. But she has consistently proven me wrong. She transfers me with the ease of a caregiver whose name should be Helga, and helps me with things I didn't even know I needed help with. Quick example before she reads this and immediately demands a raise: when Kristen first started working with me there was a two foot long gaping hole in the drywall in my bathroom. The hole was at knee height directly below the handy grab bar that I use to pull myself up while putting on my pants. For some reason, the only way I can get myself to stand is if I flail my knees into the wall, and push up while my knees are stabilized. The result: bruised knees and a cavernous hole in my bathroom wall. Kristen was appalled. Within a week, she requested I have my landlord patch the wall, and bought a yoga mat in order to fashion a pad for my knees beneath the grab bar. The result: bruise-free knees and a hole-free wall.
- Antonisha and Shaun-de'. They are students so it is questionably appropriate to say this, but I love them. In addition to being just generally awesome students, they are exquisite people. They both stay after school with me to make sure I have help into my car at the end of the day. That they sacrifice their afternoons to help me is awesome in and of itself, but in two instances their selflessness had made my heart break open with gratitude that I can barely articulate. Last week third quarter grades were due and I had 9 million things to do. After stupidly agreeing to let a few lazy AP Psych students make up tests that day, I spent all day changing grades, inputting grades, and selecting from one of 12 generic comments in the computerized grading system. Point being, by the time all of my grades were in and I had planned and prepared for the following day, it was ten of seven. Antonisha was still there. I asked her repeatedly to tell me when she had to go, and she continued to assure me she didn't mind waiting. Maybe sitting around school waiting for a teacher doesn't seem like a big deal to you, but as someone who can still vividly remember high school, I can guarantee you there is no amount of money in the world that would have kept me in school with a teacher until seven p.m.
- Then there's Shaun-de'. Shaun-de' is on the lacrosse team and had a home game last week. Since Antonisha was absent, Shaun-de' told me to text her when I had to go and she'd leave the game to help me get to my car. Shocked, I said, "Girl, you can't leave a game! I'll find another student, there are 1,400 kids in this school." Shaun-de' replied matter of factly, "Yes I can, Ms. Hooks, I'm Shaun-de'." So I relented and told her I had to leave at 4:15 and that if she was on the bench at that time and could run up to my room, I'd love her help, but that it was not a big deal. 4:15 came, and Shaun-de' didn't, so when Mr. Marinelli offered me help I took it. Ten minutes later, I got a harried voicemail from Shaun-de', apologizing for being five minutes late and promising me she hadn't forgotten me. Once again, I don't think I stopped thinking about myself for long enough in high school to even offer to help an adult get to her car at a certain time, much less leave an athletic competition to follow through with something I said I'd do. Gives the saying, "Kids these days..." a whole new meaning.
And finally, the ridiculous...
- Izzy. She is the single most ridiculous dog alive. Last weekend I needed to go to the mall to get my eyebrows waxed. In an effort to kill two birds with one stone, I brought Izzy with me. I didn't even bother putting her therapy dog-in-training vest on since at this point everyone in The Gallery downtown knows her. So I was two seconds away from steering my scooter into the handicapped accessible door I had just opened, when Izzy took off at full tilt in the opposite direction. The leash ripped out of my left hand and I immediately pictured the worst. Most dog owners might envision "the worst" as their dog running into traffic. Not I. I envisioned a small yorkie-poo swallowed whole by my "therapy dog" turned savage beast. I whipped my head around to discover that "the worst" was even worse than I'd imagined: Izzy was after a person. In her defense, he was a large man wearing a winter hat, carrying several bags and running towards me. He was also screaming like a child because he was being viciously pursued by a barking, growling beast. I vaguely remember yelling at him to stop screaming as he sprinted by me into the mall, but before I even got my words together, Izzy -- in hot pursuit -- followed him into the mall. It was only then, as she was immediately surrounded by security guards, that she seemed to realize I was no longer with her. Looking contrite and sweet as ever, she stood in the foyer of the mall, with her leash dangling pathetically on the floor, surrounded by mall security guards, peering through the glass doors at me. Mortified, I futilely willed the concrete sidewalk to open up and swallow me whole, but instead listened as the security guards regaled me for not "muzzling" my dog. It was at that point that I snapped out of speechless humiliation and felt immediately defensive on behalf of Izzy. To be honest, much (most) of her behavior is utterly indefensible, but this? This was almost admirable: she was clearly defending me from what she perceived to be a threatening man. Without thinking I yelled back; something about how she is a "protective" therapy dog, etc. etc. The guards seemed convinced and walked Izzy out of the mall where they handed me the leash and suggested I take her for a walk to "calm her down."
- I decided to get my eyebrows waxed the following day...
9 comments:
I love reading your blog. Take care and my thoughts are with you.
~Finski from South Carolina
I'm sure many have said this before, but it is no wonder that so many people are not only willing, but happy to pitch in to assist! It is a tribute to your unwaivering sense of humor overall character. My thoughts are also with you.
Those are some wonderful kids you have helping you.
Oh man, your description of IV steroids gone terribly awry is spot on. Never again for me, not so much for you either eh? I love your blog, you capture the heinousness of this dread disease with all the necessary humor. At the time it's not so funny, but after the fact if you can't laugh then, well, you know... So thank you. :)
I was afraid you'd never post on your blog again!
Kate, you are an incredible, resilient, and inspirational person. Thanks for your raw candor.
Love you, Meist....
So glad you are back. You're a wonderful, thought-provoking read, and I have missed you.
melanie
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