An Update...

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.) 

Attitude Adjustment

I need one.

It might involve a (temporary?) hiatus from facebook.

There is this ugly emotion that is about to suffocate me.  There is a kind reader out there who told me that my spirit was too big to be contained by a wheelchair (that was one of the nicest comments I've ever received, by the way), but I'm getting worried that this ugly emotion is threatening to strangle even my spirit these days.  The emotion is jealousy.

There seem to be two themes on Facebook these days: vacation and babies. And in an extreme form of masochism, I cannot stop looking at pictures. The thing that bothers me is that I truly, deeply and honestly am so happy for every one of my friends, but rather than ask questions, I want to lie in my bed, pull the sheets over my head and cry. My friend Molly who graduated from Colgate when I did, just had a baby girl and I swear to God she is the most beautiful girl I've ever seen. My roommate Meg just returned from a 10 day excursion to Alaska, and honestly, in this Baltimore heat and humidity I cannot think of a place I would rather visit.  Another girl that I ran track with in high school is gallivanting all over the countryside of Australia.   All of this is wonderful of course, but I wonder: do these people truly appreciate what they have?  Do any of us truly appreciate what we have before it is gone?

It makes my heart hurt.

So I guess, the whole point of this blog is just to implore you, if you are able to hike, or to climb mountains, or to snorkel with beautiful fish or to make beautiful, perfect children please know how happy I am for you. And please know that I wish I were strong enough to comment on your pictures, or in some cases to even pick up the phone and congratulate you.  But I am not. I am too busy sitting in my apartment wishing I were not imprisoned by my own body.  Hating myself for being a bad friend.  And wishing I had the emotional fortitude to eradicate this heinous emotion that is choking me from the inside out: jealousy.

Shattered

When I was a kid, my dad used to tell me Bobo and Floppy stories.  Bobo was a stuffed teddy bear and Floppy was his more practical, stuffed canine sidekick.  I always looked forward to a short goodnight story that included Bobo’s shenanigans and Floppy’s solutions.  There must have been a time when both Bobo and Floppy were new, properly stuffed, fuzzy and soft animals, but in my memory they looked much like one of Izzy’s chew toys (except I never ate the stuffing out of my stuffed animals.  Though I did, supposedly, chew off Bobo’s nose). 

Fast-forward two and a half decades.  I spent Monday, Tuesday and Wednesday of this past week at my home-away-from-home, Johns Hopkins Hospital.  It was a planned admission and, as such, was only slightly more organized than a late-night trip to the ER.  Though I was scheduled for admission at noon there were no rooms available, so I spent five hours in the Clinical Holding Unit before I was finally assigned to Meyer 927A.  In Meyer, I paid $10 for access to the room’s 20-year-old TV and settled in for a night of mindless Monday night television.  Right as my favorite show started, “transport” showed up to take me for a late-evening, surprise MRI.  Not a big deal, I figured I’d actually save a few brain cells by missing the Bachelorette, but I secretly wished I hadn’t wasted my $10 on an evening that would now consist of the inside of a tomb-like tube that sounded like the construction site outside of my apartment. 

As soon as they slipped the plastic “cage” over my head to ensure my head remained immobilized, they slid me into the tube where I was initially relieved to find that a mirror above my eyes reflected an image of the other room.   And though I was initially comforted to see it, it soon unhinged me in a way I never predicted: above my feet, perched at the foot of the MRI table, was a stuffed teddy bear that looked exactly like Bobo.  Agitated as I typically feel before an MRI, I attempted to calm myself down, and pass the time by creating a new Bobo and Floppy story.  This was a good idea for about 4.3 seconds.  The story involved Bobo inheriting a superpower that enabled him to leave behind all circumstances that made him uncomfortable or scared, and as I was telling myself the story I realized I was telling the story to a small child.  Not to just any small child, but to my own small child.  All of a sudden, I felt the walls of the MRI close in on me.

As this disease has progressed, I’ve lost things slowly, over the course of almost fourteen years.  All of these things have been physical though, and while the disappointment has seemed occasionally oppressive, and has required significant modifications to my lifestyle, it is physical.  As limitations accumulate, so do my needs: a person helps me get changed, my wheelchair helps me navigate my apartment, my giant mini-van helps me get to and from school, etc.  But the common denominator, as the numerator in the fraction slips closer to one, is who I am – not what I do (or don’t do as the case may be), who I am. 

As someone who spends a lot of time in her own head, I know what that means – probably better than I should.  I know that at my core I am hopeful.  I am hopeful that disease or not, I will share my life with a family.  A family that includes children.  And since I have no conscious aversion to adoption, when I agreed to try chemotherapy I didn’t give my fertility a second thought.  Which is why, when I found myself shallowly gasping for air and swallowing my own tears in the MRI tube as a result of a Bobo and Floppy story, I was – amidst other emotions – confused.

And that was just the beginning.  For two straight days I listened to and signed informed consents that consented to – among other things – the possible side effect of sterility.  I cried after every signature, but it wasn’t until I was halfway through the chemo that night that I figured out why.  This wasn’t physical loss.  As such, there was no amount of help that I could enlist to deal with it.  This was a loss that reached deeper than I can articulate.  Loss is usually characterized by something being taken away, but this loss included addition: it was the addition of a gaping black hole to my already hurting heart.  Because suddenly this disease had me in its grasp.  It had my hope.

I am sure that I am not the only person in the world who, at one point, is confronted with the realization that there is a major disconnect between the life you want versus the one you have.  But last week, in the cold confines of an MRI tube, I sure felt like I was.   And Bobo, as unassuming as ever, was impotent to help.

Perspective (?)

I'm wondering a few things about perspective these days.  I understand what it means and I see its value, but to put one's perspective into action?  That's a whole different story.

There are people that have it a whole lot worse than I do.  I see some of these people at Kennedy Krieger twice a week, and it's gut wrenching; small children with developmental and physical disabilities, a sixteen year old girl who was shot and is now a paraplegic living in a totally inaccessible house in West Baltimore, a great number of my students who have survived a level of loss that I cannot even comprehend, etc.  But to be honest, knowledge of all this makes me feel, a) guilty for not fully appreciating what I have (which I acknowledge is a lot), and b) pity, because I assume if I have as much as I do and I'm still this sad, someone else with less support or worse health must be even more sad.  Still, though, when it's a beautiful spring day and I'm out and about on my ridiculous scooter, with my even more ridiculous dog, I feel like every single person who runs by me is karate chopping me in the heart.  In those instances I have never once stopped and said to myself, self, you could be much worse off: you could have gangrene and be homeless and have the hantavirus.  I just remember running, and I remember loving it.

Probably thirteen years ago, I distinctly remember sitting in my dorm room at Colgate, listening to my caustically angelic roommate, Megs, complain about her one pimple that you'd need a microscope to see.  I was a few days out of a five-day course of IV steroids, and looked like a before picture for proactive acne solutions.  Without thinking, I spoke more sharply than I intended to, "Megs, have you seen my face right now?  Jesus."  My friend Meli interceded on her behalf, "Kate, imagine for one second that your entire family died.  Awful, right?  Now imagine, a few years later, Megs' mom dies.  Would you tell her to stop crying because your entire family was dead?  No, you wouldn't, because it's still a tragedy."  Defensively I snapped, "We're talking about zits, Meli, not dead family members."  Of course, though, I got what she meant: you can't prorate misery.  Point noted.

I've tried to apply that rationale to my life from that point forth.  I'm not going to lie, though, when people talk about "hating" their bodies' perceived imperfections, I have to fight the urge to say, stop bitching, you're healthy.  But I don't.  Because if a friend is upset, a friend is upset, and as a friend -- and I hope to be a good friend -- it is not my job to judge nor to undermine someone's sadness or frustration.

I've come to the conclusion, thus, that perspective in action isn't really feasible; at least not for me.  Maybe it's not wholly feasible for any of us, because life isn't easy, and when you're in the throes of it -- whatever it is -- it's almost impossible to not want something you can't have.  Unless you're Buddha.  (Which I'm not.)

So when it's spring and all I want to do is take a run, I guess it's okay that I still cry.

The bad, the good, and the ridiculous

The Bad.  To get it out of the way...

• 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 good.  To remind me that I shouldn't drink Liquid Plumber...

• 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...