"What matters most is how well you walk through the fire" -- Charles Bukowski

Monday, September 5, 2011

Lessons Learned: A Beautiful Journey

There is immense strength to be found in yourself. Sometimes, we just need someone or something to show us how to find it.


When I had my first spine surgery in October of 2002, I had just started middle school. I started school about a week into September and left on the second of October, with no expectations of returning to school that year. I was lucky enough to live in a small town where the school had no problem accommodating me in having home tutoring. There was no cost or complications; the whole process was taken care of for us. I don’t remember exactly when my home schooling began, though I do remember it was still Autumn so it could not have been later than November.

I sat anxiously and uncomfortably at my dining room table, watching as this little (and I mean little and low to the ground!) black corvette convertible sped up my long (and steep!) driveway. At that point I remember not knowing who in the world to expect to step out of that car, but I was more than astonished when a six-foot-three elderly woman emerged. She was slender, with short near-white hair, wearing a evergreen colored peacoat. I vividly remember as she stood at my front door with a box of Krispy Kreme doughnuts in her hands and exclaimed an excited “hellooo!” with a light British accent. She was my English teacher for that year, and she changed my life.

No one else ever taught me about life the way Mrs. Herman did, and she did so without ever intending to at all. She had so much love to give and taught me about kindness in a way I had never experienced or received before. I remember reading Holes and Tuck Everlasting that year. When my class went for a field trip to see both movies in theaters, she personally arranged to make it possible for me to attend both trips— wheelchair and all (a big deal for me at the time to feel like a normal 11 year old). She had the entire fifth grade make cards and drawings for me to put up at home and brought them to me over the course of the year. After we finished whatever work she brought for me, she would stay an extra hour or so with my mum and I, just chatting over tea. She brought me books to read and things to keep me busy when I was down. Her kindness was overwhelming.

I always looked forward to seeing that little convertible speed up my driveway, and when the day came that I no longer needed her as my tutor, I realized she had become not just a teacher, but family. I still have the cards in a drawer next to my bed and the beautiful china frog she bought me before she said goodbye sits on the top shelf of my bookcase. I never have a Krispy Kreme doughnut without her coming to mind.
We stayed in touch until I moved in the eighth grade, though I would so much love the opportunity to write her a letter thanking her for the lessons she taught me that year.

Lately I’ve been having a rough time. Being off my medicine while waiting for this surgery has made me as sick if not more so then when I was going undiagnosed earlier this past spring. I’ve been in constant severe pain (words do it no justice, as most of you reading this will understand) and today I had a bad day. It’s been quite a while since I have really cried over the pain and out of frustration. When I started declining in the spring and no doctor would take me seriously, I cried constantly. The pain and frustration of feeling myself literally deteriorate consumed my entire existence. Everything in my life took a back seat to my body. I look back to spring and even now, just a few months later, I feel like a different person not physically, but mentally. Today, though, it consumed me. The disease had me, not the other way around.

I found myself thinking of Mrs. Herman and what she taught me that year, how her kindness inspired me to find strength and positivity through my pain and recovery. Like Mrs. Herman, my chronic illness has taught me the same.

There is nothing I detest more than my immune system and slew of diseases, yet there is (almost) nothing I am more grateful for. Chronic pain and illness have taught me so much about myself, my life, and other people.

Those that know me well or have known me since I was young know that I have faced more physical and emotional struggle in my short nineteen years than most people face in a life time. Even at my weakest moments, I knew of the strength I possessed (whether or not I knew how to find that strength is another story), but the strength I have now? This is not a strength I knew I had three years ago. I realized quickly that I had a conscious choice to make: let the disease have your spirit, or let your spirit possess the disease. I chose the latter and I learned that I have an indomitable will. I can (and I will) get through anything life throws at me. I believe in myself, truly have confidence in the person I am. I don’t believe I would have such a sense of self had I not gotten sick, so much like I thanked Mrs. Herman for inspiring my will in 2002, I thank my body for doing the same now.

I am more laid back and patient, both with myself and others. I am not afraid to ask for help and I do not push myself if I know I simply cannot do something. No longer do I see taking things slow as weakness in comparison to how I used to be. I stop to enjoy small things about my day. I appreciate the most minuscule things that bring me joy— a good meal, being comfortable in bed, a good laugh with my sister. I make a point to focus on myself. I buy myself flowers every week and treat myself to mani/pedis when I’m feeling blue. After a miserable doctor appointment, I let myself feel down, but always treat myself to something positive to pick myself back up. My entire being has changed for the better, and I have two very great teachers that have guided me to who I am.

I have made friends, so to speak, with my anxiety. Despite the meds that cause anxiety as a side effect, I have learned and chosen to conquer that anxiety. It takes hard work and took time to learn how to battle the nerves, but very rarely does it win.

Chronic pain and illness have ignited in me a desire to advocate, educate, and give back. In a category of diseases that go so widely misunderstood in both the physiology and psychology of their nature, I consider it my responsibility to help guide others just beginning their journey through such life sentences, or let those who are coming to the end of their rope that they are not alone, that there is hope for another hour, another day, another week. I consider it my responsibility to educate others without these diseases about what it means to understand someone suffering and how to help a friend or loved one in need. I consider it my responsibility to share the kindness Mrs. Herman taught me through her actions by striving to put an end to the words “I wish there was something I could do” and replace them with “Let me help you” or “How are you doing today? Are you up for me to bring by some lunch? I’d love to see you!” — an aspect of kindness that after the initial diagnosis, so many people with chronic illness see fading out of their social lives. I consider it my responsibility to provide others with the resources that have helped me so far. Though I would never have chosen to be this sick, I am eternally grateful for the opportunity to give back. I’ve always been a giver (Hey Loreal, remember the 9/11 fundraiser?), but never has a cause been so close to my heart.

Despite the pain, fatigue, and all that comes along with my spine and immune system, I feel this deeply rooted sense of peace that I can’t explain. The only way to describe it would be to call it spiritual. Peace does not mean that I am happy with my body or most of my life— I’m not— but I think I have made peace with my disease and more importantly, myself. There are days where I feel at war with my body, but I understand that fighting it only makes myself feel worse.

I used to resent that I for whatever reason had to carry such burdens around with me. Now my friends and family often joke that because I was born on Leap Year, my odds in all other aspects of my life followed suit. I hope that a decade, two decades, three decades from now that I will not look back at this entry and feel as if I was naive. I do hope that I still posses the same indomitable will, the same feisty spirit, and the same strength I have found through this journey. More importantly, I hope that anyone who has taken the time (sorry, I know this was long) to read this finds that in time of struggle, there is immense strength to be found in yourself. Sometimes, we just need someone or something to show us how to find it.

*I face my second spine surgery, essentially a reversal procedure of the first one, and I keep the memory of Mrs. Herman close to my heart. To the friends still up north (Dan, Loreal, etc), if any of you know of her whereabouts or someone I could contact to try to find Mrs. Herman now, pretty please send me a message on facebook.

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