Sunday, May 16, 2010

Learning To Just...Be










No matter how you say it, no matter the culture, the country, the time period...the fact remains: friendship has always been important (hey, look at the cartoon. Even Cavemen needed Caveman buddies). Novelist C.S. Lewis has called the love of friendship "the highest form of human love" - existing somewhere between the more instinctual, familial love that you're born into and the romantic love of a life partner. Close friends can be intimate truth tellers, compassionate on whole new levels, and in my experience they can also fill different spaces within us that we didn't know were there.

I was an English major in college and one guy I always admired was the English poet, John Donne. Sure - his words can be dense and hard to manage at times, but they have also moved me tremendously. Take his famous lines: "No man is an island, entire of itself...any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee." I know he's speaking to mankind as a whole, but I also can't help but feel he's somehow reaching out to me and all those living with pain or illness - the message being we're not alone.

I guess this is how I've always tried to see my relationship to other people- somehow connected. I grew up in a close-knit family that was dedicated to helping others. I also attended a Quaker school from Kindergarten thru 12th grade because my parents wanted me to grow up learning the core values of peace, integrity, and charity (the pillars of Quakerism). Each school year focused around community service projects and a belief that every life is equal. Thus, I grew up learning that, in one way or another we're all responsible for other beings (people, animals, etc) - whether that means committing our lives to being helping professionals (doctors, nurses, therapists, etc), serving a stranger, or simply offering a smile to someone who might need one. Sure, on some people these gestures will be lost, but on others they could mean everything. If there is one thing I've learned through all the work I've done with vulnerable populations, my first year at Columbia, and my own battle with depression, we can never be sure what kindness can mean to another person. Whenever possible, I think we must give it freely because, to my core, I believe no man wishes to be an island.

So...frienship. More than any other element in my personal life, I've had the most trouble with friendships - getting into the right ones, being myself in them, keeping them, trusting them, etc. The list goes on and the issue is complex which is a direct consequence of battling illness through childhood and my most formative years. I'd say my time in high school was spent mostly in the denial phase (pretending I never had Spondylitis, telling no one, vowing I'd never be defined by an unpronounceable disease). And I think the only reason that worked for as long as it did was because my pain was manageable back then. Having Spondylitis at 16 meant having a name for my occasional aches and pains and getting to miss school for a bi-annual rheumatology appointment. It meant hearing: "one day it might progress", but not really knowing what that meant.

I believe this denial led to a certain shallowness with my high school friendships (not an uncommon thing, I know), but that's probably why one real connection remains after 13 years at that school. And then came college. In a random, unplanned visit I fell in love with Colby College in the heart of Maine..a small, liberal arts school and the school that was the furthest from home. It was also undoubtedly the school with the coldest climate.(the photo is the Colby chapel taken in January). While I wouldn't trade my time at Colby, the friends I left with, or the classes I took there for anything - in retrospect, what the heck was I thinking? Maine is gorgeous (my family spent many wonderful lakeside summers there), but Maine summers are quite different from Maine winters. I think this speaks directly to my denial: "Cold is bad for arthritis? Well for me it will be different:.."

And for the first few months, it was. But then the disease started picking up just like I always heard it would. No doubt this had something to do with caring for myself like a college freshman (read: terribly). I jumped right into the first friendships I could find for fear of being alone. These were girls that loved to party, but at that point I didn't feel strong enough to resist the group's mentality. Even though I didn't enjoy it, I drank for the first time in my life that year. A lot. I ate poorly and gained the "freshman 15". Incidentally, that year was also when I started my TNF blockers (at that time, it was Enbrel injections). When friends wanted to know why I was slowing down, why my alcohol tolerance was so low, why I was limping, or why I went to the health center every week and came back with a bruise on my arm, I passed over it all pretty quickly. I had learned in high school that my peers didn't understand arthritis (especially not in someone my age) and the truth is, I was terrified to be deemed "the sick one." I was terrified to be alone.

There came a point where I couldn't really hide my illness anymore and just couldn't keep up. But, as I had feared, this meant my "friends" went on to newer and more fun friendships. Staying in with me on weekend nights wasn't an option to these girls - it was college! I think, in many ways, I'm still dealing the pain of this; the nights spent alone feeling like I somehow had an inherent "strike" against me by being sick. Although it probably shouldn't have affected my sense of self the way it did, I can't pretend that I brushed it off. The loss of these friendships made me feel like I wasn't worth sticking around for.

Moving on, I became nervous and distrusting in friendships. I'd say I became even more closed off about my own struggles than I had previously been. When I met people, I tried so hard to be perpetually cheerful and the one everyone poured their heart out to. People even called me "the psychologist". I thought this made me happy... I really did (If I couldn't go drinking, at least I was a good friend). But the more the disease interfered, the more distant I felt from anyone my age. Thank God for my parents throughout these years. Many tearful nights were spent in my living room - the two of them reassuring me that I was special and, as my peers matured, it would be different. They have always been my unconditional best friends.

During the end of my junior year, I was lucky enough to find a fairly large group of girls at Colby that accepted me for me. But even though my heart told me they were different and genuinely good people, my insecurities kept creeping in. I still felt I had to be constantly positive and uplifting to somehow make up for my medical "shortcomings". If I was on crutches because of a flare up, it was only then that people usually remembered I was sick and asked about Spondylitis. Even with these wonderful girls, I'd respond with something brief, turn the conversation around to them, and made sure to end on some hopeful (and often unrealistic) note about my disease like, "Well, it could always be worse" or "everyone has their thing." It was easier to listen about the break-ups and boys and sub-par grades of my friends than try to explain my struggle with a disease that was never going away.

I mentioned in my previous post entitled "Staying Tuned In" that therapy has been a life saver and I'd say a majority of time is spent on my own security in friendships. Among other things, I've learned that I can be real. Just like everyone else who opens up to me freely and pours their feelings into me, I too have the right to friendship. I see now that, in some ways, I've taught people how to treat me. By awkwardly skimming over my disease and treating it like something not worth discussing, I've facilitated many one-sided friendships. If I can't even talk about my pain comfortably and honestly, how could anyone else be expected to? So it's a learning curve and for every person I open up to and who accepts me for being sick, there are three others that can't be bothered. But it's that first person - the one who really wants to learn - that I need to focus on. Actually, being chronically ill can be a pretty great built-in filter for lame friends. It helps me identify the right people and invest energy in those who will replenish mine (aka my spoons :) )

This hasn't all been my doing. Only now at age 24 with the best friends I could imagine (you know who you are), can I finally say I'm learning to Maya. And to be proud of that. I'm learning that to the right people - the people who have the capacity to truly empathize - Spondylitis is not a "strike against me." On the contrary, these friends remind me that my illness makes them proud to know me. They ask how I'm doing from day and really care to hear the answer. They can recognize what pain looks like in my face and do their best to make life easier. They understand when I can't travel to see them and instead come to me. They brighten my days and even know when to not say anything.

And from here on out? I'm seeing that being comfortable with myself and remaining open and honest about who I am right off the bat (which naturally includes being a Spondylitis patient) is bringing new, amazing people into my life. Words really can't capture how lucky I feel to have the friends I do now and, for the first time, I know the true value of friendship. I can honestly say that, for the first time, I feel like I'm worth sticking around for...



  1. I miss you, Maya dear.

  2. I miss you too, love. Hope I'll get to see you this summer <3

  3. so open and honest; shared it on my FB page. you are one wise and strong woman, maya!

  4. Babsy,

    Thank you SO much for your kind words! Also I love the pictures of your boys - you seem like a wonderful mother who really enjoys her family (refreshing!)

    Can you find me on facebook? My last name is Klauber...


  5. i just reread this post. now that i am open, it takes on a different meaning. i really have learned who are my true friends and am in the process of learning not to grieve those who i can't jive with because of my honesty. this is who i am and this is the disease i have. sometimes the disease can consume me on my darkest days, but my true friends are there even on those days. i try to find silver linings. i have hope. some days i just can't see those silver linings and it is my true friends who remind me they are out there. i'm worth sticking around for and so are you, my dear maya!