Monday, October 8, 2012

Dear Michael

Recently, I've been communicating with a young friend who is recently paralyzed. He shares his concerns, worries, and questions with me and in return I offer advice or wisdom on the issues. I'm not exactly sure if what I say is helpful or comforting, but I do my best to just be honest, even when it is hard. This experience continues to teach me many lessons, but mostly I am learning, once again, how similar we all are to each other. His feelings parallel my feelings then and now. I have so much I want to tell him, but I am trying not to overwhelm him. Instead of rattling off a bunch of advice, I decided to write him a letter. But, as I was writing it, I realized it is a letter that should be shared with everyone, from the perspective of a paraplegic. I am only speaking from the point of view of my own disability and suffering. I am not presuming in anyway to speak for loss, grief, or tragedy of any other kind.

Dear Michael,

“Hope
Smiles from the threshold of the year to come,
Whispering 'it will be happier'...”
― Alfred Tennyson

Today I sit, as a veteran paraplegic, contemplating words of wisdom to share with you, the newly paralyzed. I wonder what words can I share that will give you hope, will ease your pain, will encourage you to fight for your independence, and will keep you from fearing your future. I write this from the best place I know, honesty. I hope it brings you some comfort.

Life is different now. You were walking, just a few months ago and now you are not. You sit alone at night contemplating how and why your life changed so abruptly and severely, while friends your age drink beer and dance into the wee hours of the night without a care in the world. You envy their freedom, their innocence, and wonder why yours has been ripped away all too soon. That moment, that instant when everything changed runs rapidly through your mind, you see every detail as if it was happening live and torture yourself thinking if only you could go back and change just one thing how different life would be now. You search for a reason, an answer and come up empty handed every time because there isn't one, there isn't an answer to the why, it just happened. As far as I know and believe, it isn't part of a plan, you aren't being punished or tested, you had an accident and this is the result. Sure, you can try to be more careful from now on, looking before you leap, but the worst part, the toughest hill to climb, is the realization that we are human and we are fragile. Ten out of ten of us die. We all suffer, we all lose things way too soon, and tragedy knows no boundaries. You are far too young to know this already, but I assure you there are far more and far younger learning the same lesson every single day. This discovery is not all bad, no not at all. It is actually wonderful, freeing, and exhilarating. I like to call our paralysis, our disability, a key to life.

Right now you are learning to live again. For twenty years you lived as a walking person, not thinking about each step, about the effort it takes to put one foot in front of another. You aren't worrying about your calves hurting or spraining an ankle while playing football, you are worrying about pressure sores and circulation. Tasks of daily living that you have accomplished independently for years are now sources of frustration and aggravation. Having to relearn these things feels degrading and inhumane. People who are walking and living as you once did are now teaching you to sit and balance and reach. You want to scream because your head knows exactly what to do, but your body no longer responds. It is hard to imagine ever gaining control of your body again and it is equally difficult to picture yourself living independently as you did before. You fight the urge to shut down and give up every second of every day. But, don't give up, don't give into that urge. What is happening to you, what you are feeling, this is the key to life. This is what stripping away all of your humanly conditions means. Everything you thought was important isn't anymore. Living and breathing and being surrounded by those you love, this is what becomes important. What you can and can't do will no longer be limitations. You are learning to rely on your spirit, yourself, the core of who you are. An awareness never thought possible comes along and takes a hold of you and you are free, freer than you ever thought possible, I promise.

You worry and agonize over what people will think of you now and if they will stare or judge you for your disability. I assure you most people will express a kindness you have never seen before. Most people will rush to hold doors for you, ask to carry things, approach you and offer to help with your chair or just give you a push. If you ask a fellow shopper to reach the chicken stock or heavy cream, she will not only reach it, but strike up a conversation and ask what you are cooking. She will also offer to carry your groceries to your car as she sees you in the check out line. People will offer to buy drinks for you and your seats at football games and concerts will be outstanding. Strangers will stop and tell you stories of family or friends who have similar experiences or conditions as you have. Strangers will also tell you silly stories and make funny comments like they know your pain because they were once in a wheelchair for three weeks. You will learn to laugh and actually enjoy these moments because you will see people are just trying to connect. Children will loudly ask their mothers why you are in that thing and you will giggle inside, I promise. Friends will go to lengths unimaginable to make you comfortable or assist you in any way possible. Friends will offer to just sit with you on your worst days and party with you on your best days. Friends will forgive you and understand and love you. Without a doubt, the good moments will easily out way the bad. But, the moments you are fearful of, the moments you lie awake wondering about at night, they will happen too. You will be saddened or left feeling defeated. You will be scared to go to places like bars and malls and restaurants filled with people because people might look or comment, and they will. Strangers will say things that bother you or stare at you in ways that make you feel uncomfortable. They will sometimes speak loudly and slowly to you or assume you can't hear them when they make comments about your swollen feet or skinny legs. It will hurt, but you will learn they simply do not understand. They don't understand you have incredibly poor circulation or your muscles have atrophied, they just see someone who is different and comment. You will learn the nastiness comes from their own insecurities, their own anger. People will not understand little things, like why you are cold all of the time, or why you are late, or how it takes a marathon of energy just to get dressed or wheel yourself up a hill. Friends will disappoint you. Instead of being angry about this, you will begin to see people in new ways, with eyes of compassion and empathy. You will see everyone is suffering in his or her own way. For I have learned, when we attack each other or those weaker or less able, it is an outward expression of our own inner suffering, our own demons. Others' angry or harsh words will become a mirror for your own. It will be easy to forgive and to understand because you will know for sure we are far more alike than we are different. You will know this for sure because you have faced suffering and pain head on and have had to pull yourself out of the darkest of moments and you know you are not the only one. You look deeply and see how indiscriminate suffering is, you see children with cancer, moms and dads ripped away from their children in car accidents or because of terminal illnesses, widespread and unnecessary starvation, humans trafficked for financial gains, children running from warlords, it seems to never end. You learn each one of us is broken, has a seething wound, a heart that needs repair. You learn to offer kind words and gentleness because you know, without a shadow of a doubt, pain is debilitating and hurt is excruciating. You will never want to be the one who causes these things, never. You will learn to be the best friend, the friend who offers unconditional love, the one who talks to the wallflower, and tries to be a light in the room instead of a shadow of darkness. Knowing the sting of judgement and the loneliness caused by a lack of understanding will fuel you to let go of and release your own judgements, your own harsh words, and your own inability to understand others. You will try your best to do these things, knowing you too will fail, knowing you too will momentarily forget the harshness of your own words and thoughts, but now you will know how to recover, how to mend the wounded spirit.You will become kinder, more gentle, and more aware of how you make others feel. Because, as Maya Angleou once said, "When you know better, you do better."

The road ahead is long and filled with many obstacles. It seems impossible that any dreams you once envisioned have any possibility of coming true. It seems like you will never learn to get dressed, drive a car, or cook for yourself because right now you can't even balance on the edge of a bed. But, I promise you, in a just a short time, you will learn to live again, you will feel like a person again. You will learn to live with your lack of muscle and find the balance you need, you will learn to drive with your hands, getting dressed will take far less time, and life will become about living again instead of learning to live again. All of this will come with time and practice. But, what is coming, what you don't know about yet, is what you will learn, how much you will know. How you will with out any hesitation or doubt know and live the definitions of the words love, hope, kindness, gratitude, perseverance, and faith. Your heart will expand and love in ferocious ways. Your ability to see our commonality, our sameness, will come into full focus. Your eyes will see things in ways they never did before...the sky will be bluer, the flowers will smell sweeter, the music will be prettier, and the dreams will be bigger. You will reach for things higher than you would have before and won't care one bit about having to sit down and try to reach for them...it will become easier than ever. You will know your spirit and that it is not disabled, it never was.

Much love,
Sarah








19 comments:

  1. Awesome letter...truthful, inspiring and from the heart!

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  2. Wow. I'm breathless because I held it when reading, and my eyes are burning from tears I refuse to shed because I want to read without interruption. The depth of your empathy is incredible and your gift for writing is outstanding and inspiring.
    Your words never fail to put life in a new perspective, these words more so than ever.
    I hope your letter brings Michael comfort, even if he can't believe it all now, I'm sure he'll return to this letter again and again, like the light at the end of his tunnel.

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  3. Sarah, how wise you have become, way beyond your years. I am glad to see you are sharing this with the world.
    <3

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  4. Wow, I agree with the other comment about holding my breath while I was reading that letter. Very moving. I cannot imagine that young man not finding some comfort in your heartfelt words.

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  5. Thanks for sharing this not only with others experiencing commonalities but with all others, too. This is one I may return to when I need reminding of considering others' perspectives and what's truly important in life. Glad to call you my friend!

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  6. Beautiful and inspirational, Sarah. Thank you for your encouraging and wise thoughts.

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  7. Sarah, thank you. Although this is meant for Michael, who suffers only as you understand, your letter helps me. It is beautifully written and even more so, beautifully thought, felt, and lived. Thank you for sharing this with all of us.

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  8. What an amazing letter, both for Michael and...all of us. Sarah, you exude strength and unparalleled human spirit. Thank you for your honesty, and inspiration.

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  9. This letter is beautiful. It is a gift. Thank you for sharing it.

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  10. i LOVE the part about just appreciating people trying to connect - even if they do it clumsily!!!!! and i love the movie star story.

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  11. Beautifully written. I love the idea that change brings opportunity. For me, embracing disability culture was a revelation. Our challenges give us strength and perspective, appreciation and empathy. I always want to say, Welcome! Life through the looking glass is all kinds of wonderful :)

    Best wishes!

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  12. This is a letter of comfort and inspiration...for all of us! If we, as readers can help to support Michael, please let us know.

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  13. *newly following your blog from EnjoyingTheSmallThings*
    This letter is so very eloquent, and absolutely beautiful - even if your words change just a few lives, the world's better for it. Thank you so much for sharing.

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  14. Thank you for such an amazing letter. My 8 year old niece (who has difficulty using her left hand and leg due to cerebral palsy) was in tears last night because a couple of "mean girls" wouldn't let her do the dance routine with them at recess because they said "she couldn't do it right". People like you give me hope that one day soon she will realize that she is amazing because of all the wonderful things she can do and not lesser because of things she can't do.

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  15. You're spirit is not disabled, it's never been. My son has been in a wheelchair since birth, for 9 years, and these are the words that have resonated with me more than any others. Thanks for sharing. Eagerly awaiting your next posts ;)

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  16. Daer Sarah,
    Thank you so much for sharing your honest and heart-felt words of wisdom. Please continue to do so as long as possible, so that others may find comfort and motivation in them.

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  17. Thank you Sarah Sitting Down. This brightens my day, and I'm not even in a wheelchair and have never been in one. But I have a morsel now of more understanding. Thank you.

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Thank you for commenting. I appreciate all of your words.