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.