Friday, July 21, 2017

On The Meaning of Life

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.

Mary Oliver, When Death Comes

The above is one of my favorite poems by one of my favorite poets, it encapsulates everything I want from my own life and what I believe everyone should aspire to: to make of [their] life something particular and real. It also, though, highlights my current existential crisis, and leads me to wax philosophical while writing a potentially self-indulgent blog. A blog that, I may note, explains why I publish a blog so infrequently: I pick hard topics.

It is amazing how, as my body and its function continue to wane, my cognitive dissonance grows exponentially. I feel increasingly as though I am having an out-of-body experience because really, this body is not me. I see myself in the mirror and internally gasp: this must be a mistake. Despite my horror though, despite my unwillingness to accept the reflection I see, there I am. Furrow my brows as I might, I'm not going anywhere. It is me staring back at myself with skinny arms and bad posture, it is me in a wheelchair that is slowly engulfing my entire body, it is just me. But without a body that works, what does that mean anymore? Am I my thoughts? Am I my memories? Am I the words I speak and the people I love? Who am I? I took a class in college called the Philosophy of Mind where I wrote a paper articulating that a person’s self is separate from his chemical makeup. I had only been diagnosed with multiple sclerosis a year and a half prior to that course, so my disease had nothing to do with my convictions. Nevertheless, at 20 years old I was a steadfast dualist and nothing could convince me otherwise: a person is more than his or her physical makeup; identity is indelible, invincible and inextricable from a person’s body, yet it endures even when the body does not.

From my current vantage point, I wonder, is that a good thing? What gives an invincible identity its value? Moreover, what gives a lasting identity its happiness? I still agree with my 20-year-old self, I still believe that my self will persevere in the face of my body's demise, but I question – sometimes – whether or not this is a good thing? This is the root of my existential crisis: it is hard for me to find fulfillment or to attribute value to an identity that can no longer do anything with its intentions or desires.

When I took education classes while getting my masters, we learned about Maslow’s Hierarchy of Needs. In the context of teaching, the idea was that a student could not reach his highest potential academically until his basic needs were met. In the context of life, the pyramid represents what steps we must ascend in order to reach our highest potential, our actualized, best selves. We cannot reach the top of his pyramid without first meeting our physiological and safety needs, and without achieving a basic level of security and belonging. Up until a few years ago, I felt as though I had things pretty much figured out when it came to this Maslow character: with caregivers I could complete necessary tasks to achieve safety and survival, I felt a sense of belonging thanks to my family and friends and students, and my achievements gave me the esteem I needed to motivate me towards my life’s purpose. There were numerous glitches along the way, and I by no means lived a perfectly fulfilled and “self actualized” life, but I felt generally as though I had climbed to the top of Maslow's hierarchy of needs, figured out what brought me fulfillment and joy, and then watched the entire pyramid flip over on itself (and me). So here I sit with the weight of the pyramid (and all of its competing needs) suffocating the self I had come to know and love.

Given the fact that I am currently squished beneath a theoretical pyramid, what is my next step? How do I find fulfillment and joy again within a broken body, how do I take solace in the endurance of a self that feels shattered?

Accepting the numerous roadblocks between my current reality and my previously imagined full potential, I wonder what to do next? I envisioned my fullest potential would encapsulate some, if not all, of the following: running, horseback riding, swimming, playing the piano, drawing oil pastels that would adorn the walls of my own house, teaching, maybe getting a PhD in educational philosophy, starting a program for at-risk middle schoolers in Baltimore city, writing a book, adopting kids and eventually leaving this world behind knowing that I had tried to make things a little bit better while I was in it. From the vantage point of someone who can no longer move, I understand that I need to reimagine this vision. I need to reconstruct a vision that lies somewhere between the superhuman Kate-goals of yesteryear, and my current expectations of myself that often involve just making it through each day. I need to make peace with the fact that the most time-consuming aspects of my day-to-day involve attending to my basic needs, and acquiesce to the fact that reaching the top of Maslow's pyramid will require a lot more patience this time. 

First, I need to rewrite my fullest potential under entirely new circumstances. My life continued after my previous achievements receded into memory: I am no longer a runner, a student, a horseback rider, a swimmer, a pianist, an artist or – most painfully – a teacher. I am no longer any of the things that gave me my previous identity; that gave me pride; that brought me joy. In my multiple sclerosis-imposed stillness, I have turned inwards and faced some unwelcome realizations. Namely, that just because you no longer do something does not mean that that part of you disappears. Just because I no longer can run does not mean I am no longer a runner at my core. This realization makes the grieving process difficult, because it is hard to move forward while the ghosts from my past insist they are part of my present. I know that I am more than what I have done with my life, yet the memories and the love I have for the things I did, construct an identity that is plagued by a constant level of inescapable sadness.

And that is not who I am. My fullest potential is not mired in grief.

Because despite the sadness, I do still feel pride in my resilience, and I do still find joy in the world around me. I can still love, I can still communicate, I can still appreciate the beauty in my surroundings and feel immense gratitude for the world I live in. There are times when something so simple can make my heart break open: my favorite horse at the Equine Research Park down the street rubbing my cheek with her nose, Izzy climbing onto my wheelchair with all four legs just to kiss my face, Truman curling up next to my legs under the covers, and any type of physical affection that isn’t functionally required. I love seeing people, out of the corner of my eye, watch in awe as Kelly carries me on and off her boat by herself, and I love watching the clouds streak by above me as we motor down the lake. I love when the sun hits my face on an otherwise chilly day, and when my dog demonstrates unmitigated joy at something as simple as her ball. I love when certain songs transport me elsewhere with their lyrics and melodies, and when someone constructs a perfect bite of delicious food to savor in my mouth. I love making others laugh, even if it is at my own expense, and sharing memories with old roommates that occasionally make me cringe. I love watching my friends’ kids grow up, and seeing my nephews live a childhood full of love and sports and more sports. I love hearing from old students, and knowing that so many of them have turned into fully productive and thoughtful adults. There are so many things that make my heart feel raw and alive and full of gratitude, that I need to stop listing them for time’s sake.

So, for now maybe my best self needs to fully embrace what I have when I have it. And to allow the memories of my previously fulfilled life to exist inside of me without strangling my ability to appreciate the now. I need to continue doing what I can with what I have even though what I have is subject to change, and may never again be what it once was. Maybe I can be more patient when my self is sad, and more forgiving of my interrupted life goals. Maybe I can realize that despite a body I would vastly prefer to live without, it is still my responsibility to do more – as Mary Oliver says – than visit this world.

There is a cliché statement, it is better to have loved and lost than never to have loved before. I have lost more than I ever imagined I could, and it has shaken me to my very foundation. But sitting in the cemetery of my life’s achievements, I hope I can concentrate on more than just the myriad gravestones around me.

I had a roommate once who said, in slightly melodramatic fashion, "Is this all there is?" And her boyfriend at the time looked at her and said, "I think so. But this is so much."

My 21-year-old self knew those words were true then, and I know them to be true now. But sometimes when I am chipping away at the bottom of Maslow's pyramid on a daily basis I forget.

Tuesday, April 25, 2017

On relationships

One of my favorite ex-boyfriends said something to me that he might as well have tattooed onto my skin, because, like most hurtful words, they were seared into my memory with the intensity of a young calf being branded, you know, my friends all say they could never date a chick in a wheelchair. An obvious response to the comment is: what a d-bag, I can't believe he said that to you, he probably has dick friends, he was trying to make himself feel good, etc. etc. And while there is truth to all of those responses, I'm sure his was not a fabricated statement. Further, while the hurtful words should never have been uttered, the sentiment makes sense.

For me, sometimes the only thing more difficult than living with this dumb disease, is trying to figure out how to be someone's partner while having it. I think I cognitively understood the risk going into this, and I think she did too. But the actual day-to-day is so. Damn. Hard. Why, you may ask? Let me shed some light on this subject:

No matter how long I am in a relationship I don't know if I will ever feel good enough. I don't think I will ever feel worthy of a beautiful, kind, hard working, compassionate partner because I will never be able to give her what she gives me. I understand that this is an unhealthy perspective to bring to our relationship, because it makes me feel like I need to prove that I deserve her. Mainly to myself. But like an ant trying to climb itself out of quicksand, I don't know that I will ever achieve my objective. And for those of you who wish to allay my fears, please don't. Just hear me out.

If I did not rely on caregivers to drive me to and from the grocery store I would love to bring her dinner or flowers five days a week, but then again, if I did not need caregivers to drive me somewhere, I would just help her make dinner and wash the dishes any night she was free. As it stands though, I try to do something helpful once a week, even if it is as banal as running errands for her at target. Other than that, she is stuck working too much, getting too little sleep, and taking care of her house, lawn, dog and – on the weekends – me. I cannot cook, I cannot drive to get takeout and I cannot even Google takeout menus without my Dragon software. Beyond that, once we eat I cannot help clean up. We cannot sit on the couch and watch a movie eating pizza without Kelly placing the order, driving to pick it up and then physically feeding it to me. I have caregivers come over to Kelly's every evening and morning of the weekend, but once they leave she is on her own to help me pee, give me a baclofen, straighten my left arm, push my shoulders back etc. No matter how long of a day she has or how stressed she is, my needs never give anyone a break. And, as Kelly is a human and not a robot, she is occasionally exasperated and I can tell. My response, no matter how effectively she attempts to hide her exasperation, is to recoil to the same spot that I was sitting over a decade ago on my green couch in Baltimore, where the words, my friends said they could never date a chick in a wheelchair were first introduced to my brain. Clearly this is not a helpful or healthy response, and unless I can squash my insecurities and remind myself of all the things I do bring to this relationship and of all the memories we have already shared in our almost 3 years together, I inevitably come out with something like: "I think we should break up."

Which never fails to piss Kelly off.

But I cannot help myself. I feel so selfish imposing my life upon her, and I immediately think of all the alternative scenarios that could enrich her life tenfold in my absence – she could be with someone who could drive to pick up the pizza, feed themselves, cleanup and even take themselves to the bathroom afterwards. It is my fault that she is not with this fictitious, superior alternative to me, which means I am a selfish person and if I truly loved her I would set her free. That is 100% my thought process, and 0% what I actually want, but sometimes it feels like the only solution to the stress in our relationship.

Meli – my best friend since high school – listens to me dutifully when I relay my relationship woes, and almost always responds with: "Kate, this is your shit, this is not Kelly's. You need to get a hold of your insecurities and deal with this on your own." And I know this is true, but sometimes self-doubt trumps reason and I speak. Which always makes an otherwise benign issue much less benign.

Because the next stage of the "fight" which was inadvertently caused by her exasperation, leads me to explain all the ways her life could be better without me, while she becomes increasingly annoyed. The more annoyed she gets, the more insecure I become and eventually we both get quiet and go to bed angry. Except unlike Kelly, I cannot sleep if there is any semblance of conflict in my life, so while she falls instantly into a peaceful-seeming slumber, I lie there and turn a perfectly normal confrontation into a Dr. Phil-worthy catastrophe. In addition to my insecurity is running rampant, I also start thinking, she knows I can't sleep when she's angry with me, why couldn't she reassure me? Why couldn't she at least put her hand on my arm or give me a kiss good night? How can she be so cold? In reality, I know at this point that Kelly's sole objective is to go to sleep and she has no ulterior motives, I cannot understand how anyone could sleep without resolution.

This is just one example of an issue that highlights both the normal and the abnormal aspects of our relationship. I think it is normal for a couple to have different confrontation strategies. I think it is normal for one person to want to resolve everything immediately while the other needs to digest and talk things over later. I think it is normal for a couple to have different sleeping preferences, and it is even normal to bicker about one person being "needier" than the other. Beyond that however, this scenario is completely abnormal. Our relationship is completely unbalanced, and it weighs on both of us in completely different ways. Further, it is difficult for either of us to vent about our respective burdens in any type of healthy and honest way without compounding my insecurities or Kelly's guilt. The obvious solution: vent to someone else. However, while obvious, this solution is not always viable because our individual burdens are so unique to us. All of our friends are in significantly more balanced relationships, or at the very least, in relationships where one person is not both a partner and a caregiver to the other. Even my therapist, who always offers a compassionate and judgment free ear, has yet to offer any concrete advice.

So until we find an equally unbalanced couple out there, we will continue to rely on our own strength. We will rely on our own patience, our own resilience and our own commitments to each other and to ourselves. Ultimately the success of this relationship comes down to two things: trust and choice. I need to trust that for Kelly, our three years together trumps her occasional frustrations with my body. I need to trust that she loves me and she chose me for the person I am in spite of the body I inhabit. At the same time, she needs to trust that when I say things like, "I think we should break up", it is coming from a place of deep insecurity and never from a place of rational thought. She also needs to trust that I chose her. And I acknowledge that this choice comes with great responsibility; responsibility to address my insecurities because she deserves the healthiest version of me possible. Trust and choice.

I will probably struggle until the day I die to understand why Kelly chose me, but it is a struggle I will happily embrace if she is by my side. Because as long as Kelly chooses to "date [this] chick in a wheelchair", this chick will work to believe it is a choice she does not regret.

I just hope that next time that I lose the internal battle with myself and I hastily suggest a break up, she will trust that I am coming from a deeply sad space and will summon enough patience to put her hand on my arm before we fall asleep.


Thursday, April 20, 2017

On Ethiopian Food

Quite a weekend this weekend. Kelly’s dear friend Annette got us tickets to go to the Head and the Heart concert at the State Theatre. I’ve been listening to the band and getting pumped for the concert since January, so I was pretty stoked that the day had finally arrived. I wore my favorite pair of jeans that I’ve had since my Baltimore days, and my favorite orange sweater because it’s, as one of my college girls said, a fan favorite. I even had one of my college girls put on makeup for the occasion, so I was feeling on point, ready to do something outside of the norm. Not to belabor the point that I make frequently, but there isn’t an overwhelming number of things that I loved to do in my pre-MS life that I can still do in my post-MS life, but listening to live music is still one of those things. (And honestly, I can do it better now than I could when I was healthy because I usually get pretty sweet seats.)

So you get the point, I was excited for the concert.

Kelly and I met Annette and her partner, Dan, at Hawii, a relatively new Ethiopian restaurant downtown. Kelly and I had both eaten there once, and though I recalled it was spicy, I also recalled it was delicious. And one of my best Baltimore friends and I used to frequent an Ethiopian restaurant in Baltimore that I loved. As dining out is another post-MS activity that I continue to enjoy, I looked forward to our Ethiopian feast almost as much as I looked forward to the concert. Upon arrival, we ordered three meat dishes and two vegetarian dishes that came on injira, a type of flatbread that reminds me of a flourless pancake, and we split everything three ways (Dan ordered to his own dish). Anyway, everything was delicious, and despite the fact that I was slightly nervous about the spices, I ate without abandon. A decision that I came to regret less than two hours later.

We got to the concert before the opening act and arranged ourselves in the front row insert after (one perk of the wheelchair). Kelly took the headrest off of my wheelchair so it wouldn’t interfere with anyone’s view, and we settled in to eat our stale Ithaca bakery cookies while listening to Springtime Carnivore. Opening bands are very seldom bands that I would independently elect to listen to, but for whatever reason the music from this particular band made me more uncomfortable than usual. Not uncomfortable in a I feel awkward type of way, but uncomfortable in a I need to get out of my skin-type of way. It wasn’t the band’s fault, but the uncomfortable feeling just coincidentally crept through my body simultaneous with their set. I am prone to these sorts of feelings on occasion, so I tried not to panic. My body isn’t particularly comfortable to exist in on a good day, so add a couple arm cramps, a neck spasm or two, and it becomes increasingly difficult to think about anything other than my own discomfort. As my discomfort morphed into queasiness, however, I became somewhat alarmed. Unfortunately at this point, The Head and The Heart had just started playing, so it was way too loud to express my growing concern to Kelly. I glanced around wondering if there was a nearby receptacle just in case I had to throw up, and seeing nothing I realized my queasiness should not have been ignored. I proceeded to vomit all over the front of my dryclean-only sweater, my pants, my wheelchair and even my shoes. There was almost no warning and no ability to contain myself, I felt like the girl from the exorcist. Kelly sprang into action and had my chair on, heading out of the concert before anyone even noticed what had happened, but her plans to whisk me away into the bathroom were thwarted by a broken stair lift. Unable to escort us from the stage level to the bathroom level a few stairs up, Kelly backed me out of the nonfunctional lift. I can’t say at that point I even noticed what was going on, I was just trying my best to convince myself that the nausea was over and I was going to be okay. Once Kelly backed us out of the broken elevator lift, Annette and Dan parted the crowd as we attempted to exit the concert amidst standing fans.

In retrospect, I’m pretty embarrassed that this happened, especially considering the fact that my face was covered in vomit. At the time though, all I wanted to do was get some cool air on my face and leave the concert.

Luckily, despite the fact that I tried to convince Kelly to take me to her house and get me changed so we could get back to the concert before it ended, Kelly took me straight home. It was a good thing too, because in the privacy of my own bathroom I vomited about 10 more times – all while Kelly held my head forward and the garbage can in front of my face. She was even able to hold the garbage can for me while giving me a shower, a most impressive feat. Suffice to say, the evening did not pan out the way either one of us planned, but more important than my retrospective mortification, I also am immensely grateful for several things:

·        Having a partner that is incredible in times of crisis. I hate to have Kelly see me vomit uncontrollably because I fear every time she sees me from now on she will picture me with vomit on my face, but she is undeniably the best person to have by my side. Nobody makes me feel more safe or more taken care of then Kelly. Something I do not take for granted and that I wish I could reciprocate.

·        Friends like Annette and Dan who immediately abandoned their front row seats at the concert to move the crowd out of our way during our exit.
·        Madison, one of my Ithaca College PT students, who changed her plans to spend the night at my house to make sure that I did not have any additional nausea related incidents. Her reliability and maturity enabled Kelly to go let her dog out, while trusting I was in good hands.
·        My mom, whose relaxing Saturday night of watching dateline murder mysteries on the couch, was exchanged for an evening of laundering Ethiopian vomit-saturated clothing.
·        The State Theater who, after learning about the broken lift, offered us complementary tickets to an upcoming show and had the lift serviced and fixed the next day.

I guess I will avoid Ethiopian food, at least for the near term, and in the future, as soon as I feel anything that could possibly be defined as “queasiness”, I will hopefully let someone know before it is too late.