Dandelion Wishes

I lost my innocence the day I realized life changes in an instant. At first, I felt a deep sense of sadness. I felt entirely too young to face such a truth. I felt dreams, and hopes, and wishes weren't possible because they could be taken so fast and without mercy. But, after time went on and after I fully accepted the idea, I discovered this knowledge is actually quite a gift and it certainly doesn't destroy dreams or hope, it only makes them grow stronger.

Gratitude. Joy. Love. Forgiveness. I wasn't quite sure where to find these things before my accident. I searched everywhere and everything. I tried new personalities, new outfits, new locations, new jobs, and while I found them for a bit, they always seemed fleeting and ready to escape. The day I learned I was paralyzed I assumed this feeling of joy was lost forever. I struggled to grasp a small piece of it, but quickly felt it slide between my fingers and fall to the floor. As my illness progressively grew and took over my body, gratitude was a rarity and hidden in the depths of my pain. I couldn't even begin to imagine what life would feel like with this thing called love, dictating moments and circulating through my body once again. Forgiveness wasn't something I practiced because too much anger and resentment prevailed.

The loss of basic function is fierce. I learned and lived the true definitions of isolation, burden, and cruelty. A life sentence seemed quickly thrust upon me. Over time, independence won in certain areas only to be taken away, yet again. And all while my body ebbed and flowed, the one thing that remained constant and never changed was my spirit. It took massive hits, the flame would almost go out, but it never fully extinguished. On some of my darkest days, I almost let go many times, but in the end, after a good cry, after an emergency call to a friend, or after a yelling session into the air, at whom I really don't know, I always ended up holding tightly to any chance at life. And that little bit that was left was forced to exercise. It soon acquired practices of gratitude, moments of joy and love, and I demanded it find forgiveness.

Gratitude. Joy. Love. Forgiveness. These are my mantras, the tour guides of my thoughts. Because I know everything can and will change at any second, I fervently practice these principles. Gratitude is powerful. I challenge myself to catch it when it is hardest to find and to notice it when it is easy to see. When something with my body happens that is so overwhelming and so demeaning to deal with, I think, at least this is better than the last time this happened or at least I am at home and not at a football game. When my dog barks incessantly or tears up paper and scatters it all over the living room, I think, at least she is here to bark and tear up paper. And during moments of extreme illness and while I continue to heal, I think, at least I am better than I was yesterday. And before I fall asleep each night, I think of at least five things I am grateful for that day. Sometimes it's an effort to come up with them and sometimes I can't stop thinking of new and different additions to my list. And when gratitude permeates my life, joy is never far behind. Joy creeps through doorways and opens windows and flies in like giant gusts of wind. And when I finally pause long enough to notice and feel these gusts I learn to love and forgive myself. I drink in the love for my body, no matter how broken, and I forgive myself for not accepting it. I acknowledge its fragility and forgive my carelessness. I love its uniqueness and ability to mold itself and learn new methods and forgive my determination not to give into this ability to change. And the most wonderful part about extending these moments of grace to myself, is I finally have something to give others. I need to feel gratitude to extend it to others. I need to be joy to be joyful for others. I need to love myself in order to have any love to give. And I must forgive myself, in order to offer forgiveness.

This past week I learned my chronic bone infection no longer exists. It just left my body. My doctors ran many tests and discussed the results several times and several different ways and the infection is just gone. And this week, this wonderful news found itself juxtaposed with a week filled with paralysis troubles. I battled my independence in a lot of areas. My body was just out of whack, as it is so many days. Only now, instead of loathing my condition, I know, as fact, everything changes in an instant. I know the good comes with the bad and moments pass. I know on Monday I might combat the loss of basic human functions, but I also know on Friday I may experience the greatest of human emotions.

I ended the week at the park with Ashlea and her kids. We played waitress with her daughter and ordered chocolate milkshakes and hot dogs delivered to us in the form of sticks and grass. We watched her toddler son slide down the twisty, tube slide head first and jump right back up and do it again. We laughed hysterically when her daughter tried to make a wish on a dandelion and when its feathery petals refused to blow off its stubborn stem, she just ripped the top of it off and said, "There, now that wish will come true." We ventured back to the place I call home, the place eight years, almost to the day, Ashlea helped me move into as I grasped to any shred of life I had left. She and her then boyfriend, now husband, carried box after box and every piece of furniture. And later that evening, after all of the other help left, we gathered in my living room, surrounded by boxes, eating cheeseburgers from the bar down the street and played Super Mario Brothers on my very old, and vintage Nintendo I've had since I was twelve. And this past Friday, we gathered around my kitchen table, ate our grown up lunch of healthy avocado, cucumber, and tomato salad, and watched while their children, the children that didn't exist all those years ago, played in the same living room and ate peanut butter sandwiches.

Gratitude, joy, love, and forgiveness. It takes all of these things to awaken to the blessing of a moment like this. And the fight to stay alive and the work it takes to have every moment and everyday is more than worth it when I have a week like this week....even with the bad stuff smashed in between. It all can change in an instant and I am no longer afraid to allow it to change, because I never know what is right around the corner. Sure, the initial alteration might sting a bit or quite a lot, but as time goes on and wounds heal, life just seems to get richer, lovelier, and so full of joy. I am ever so thankful to know this truth. And when I am frustrated because a wish just won't come true, well, I'll rip the head off of that dandelion and make it come true.

Bella, Bella

I worked on a post all week and planned to publish it last evening, but, in light of the recent tragedies in my country, I changed my mind. I almost pressed the publish button and felt an urge to hold back. I wrote on a topic that seemed too heavy and too dark for such a sad week. Instead, I am sharing a little something I jotted down in my purple composition book. I record all kinds of thoughts and quotes in this little book and it is filled with pages of handwritten notes and paragraphs. I am old school and don't always run to the computer to type ideas. There is just something so nostalgic about pen hitting paper and a hand that aches from too much writing. I promised myself I will eventually post what I wrote, just at a later date. My heart is heavy this week and I need to feel a little hope and a little bit of love.

Shortly after my injury, someone, I honestly can't remember who, handed me a piece of paper with an essay printed on it entitled, Welcome To Holland. It is written by the famous Sesame Street writer and mother of a child with a disability, Emily Perl Kingsley. At first, I loved this piece of writing. I pinned it to my bulletin board and read it several times. I understood its beautiful sentiment to challenge readers to find wonder and awe in any given situation and to be grateful, whatever the circumstance. The author compares raising a child with a disability to arriving in Holland instead of Italy, when the planned trip was really to Italy. She shares all of the magnificent attributes of Holland, windmills, tulips, and Rembrandts. She argues Holland, or life with a child with a disability, is just a different place, but still offers wonderful things.

     

"It's slower paced than Italy, less flashy than Italy...And for the rest of your life, you will say, "Yes,    that's where I was supposed to go. That's what I had planned."...But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland." 

As I said, I used to love this work. But, then one day I didn't. As a person with a disability, it suddenly angered me. I took it down and put it in a drawer. I love Holland. I love tulips and Rembrandts, and I also love Italy. The time I spent in Italy, right after high school, were some of the best weeks of my life. I rode on the back of scooters, looked up and was silenced by the grandeur of the Sistine Chapel ceiling, tasted incredible food, and sipped wine and homemade limoncello. I woke up to elegant Italian women talking out of windows and hanging clothes on the lines that hung all the way across to the neighbor and friend's window. I watched fashion shows,  in the middle of the day, on ancient steps in the heart of Rome and, in awe, witnessed the models hop on scooters in short skirts and stiletto heels and drive speedily away. Italy is full of life. The gorgeous men walk and pass by while saying, "bella, bella." The outdoor street cafes are buzzing with conversation and beauty. It's lovely and romantic. I've traveled to other countries as well and equally appreciated all they had to offer. Travel is the chance to experience and learn. I don't spend time ranking these joys. I don't consider any of the places I visited a lesser alternative. Each has so much to offer, so much to enjoy.

I did have a different life plan for myself. I did "buy a bunch of guidebooks and make wonderful plans", but just because my plan didn't exactly work out to my exact standards and specific ideals, doesn't mean I didn't still land in Italy. It is my job to make my own Italy. Italy is mine for the taking.

Last evening, my friend Liz, called out my name, "Sarah, Sarah." I quickly ceased chopping my avocado and headed to the open kitchen window. In my kitchen, there is a large window that is almost floor to ceiling in length. It is a perfect spot for window conversation especially in the spring and summer time, when the windows are almost always wide open. I am blessed enough to live near great friends and we talk so much out of our windows, we started calling it Italy. I actually never realized the significance until last night. As I approached the window, I saw Liz standing outside with a friend, Libby. This was my first time meeting Libby. Liz introduced us and right away her friend exclaimed, "I wanted to come to Italy too!" She had no idea the gravity of what she just said or the lump in my throat I forced down. We all happily chatted and laughed and then waved goodnight. I returned to chopping while trying to hold back the same tears, the same lump in my throat. 

I did it. I created my own Italy. My life may not be exactly as I planned, but it doesn't mean it is any less satisfying or worthy of being called Italy. Sometimes my condition may be difficult and force me to grow and change in ways I resist or loathe, but at the end of the day, I cherish these lessons and feel an overwhelming sense of gratitude for my life and the experience to learn from it. Mostly, I know for sure, my life is what I choose to see and feel and think. I can have Italy anytime I want it...it's in my very own kitchen and outside my very own window. 

Seasons

Winter this year mostly looked like this picture. It snowed often, but not enough accumulation to close anything and just enough to eventually grow tedious. Winter gifted this lovely city with wet, cold, and really cold days. While I eagerly anticipated its arrival, I became weary of drying my wheels, wiping wet paws, short days, hats, scarves, coats, and gloves. And just when I thought handling it one more day would drive me to exhaustion, the sun brightly glistened, the crocuses inched through the once frost bitten dirt, and the soft heat of spring warmed my cold bones.

I appreciate the change in mood accompanying each season. Spring is delicate, breezy, and peaceful. It brings hope and rejuvenation. The rain waters the colorful and aromatic flowers and brightens the grass, washing away the winter grayness. Summer sneaks in and I see bare shoulders and smell sunscreen. The pools are filled and steam rises from the blacktop. Fans buzz and long evenings on porches with frosted drinks and endless conversation gleefully fill my neighborhood. And just when I think I can't take the humidity and sticky skin and twice a day showers, fall beckons with its crisp leaves and sweatshirts and football on the lawn. Instead of smelling grills charing summer staples like hot dogs and hamburgers, I smell bonfires and hear the echo of laughter. I see kids and moms rushing to soccer games and the school buses lining the sidewalks. I open the armoire filled with blankets and grab an extra one for my bed. Before long, the sweatshirts are replaced with heavy parkas and hats, the fireplace fires are stronger and more often, and the cool, crisp breeze is replaced with the gusting and howling winds of winter. The cotton percale sheets are switched out with warm flannel and pots of chili simmer on the stove. The evenings are shorter, begging intimate conversation and warm drinks, while watching white snow gently fall on the once green and budding trees. And although I may tire too quickly of extremes, I always welcome each change of pace with open arms.

Honoring and welcoming each season is, yet, another practice of gratitude. While I may prefer the perfection of spring and fall and sometimes loathe the doldrums of winter and the scorching heat of summer, I remember a transformation is just around the corner. Such is life. When life seems so unbearable I think it can't get much worse, I remember to stay positive, grateful, and remember what is just around the corner. Each day, each moment has something new and glorious to offer. And while there are moments I am not fond of, they are always flanked by cherished memories and anticipatory occasions. But mostly, when I let go and learn to swim with the ebbs and flows, learn to relish in the present moment, whatever it may be, and practice a deep appreciation for what is now, I see everything is just as it should be. And if it isn't exactly where I wish it to be, well, the season will soon change.

Stillness

I frequently yell at inanimate objects. I'm convinced my bed frame carries a personal vendetta against me and protrudes itself every time I pass by it. My door frames jut out and deliberately hit my knuckles. I raise my voice to both of them and ask, "Why, why do you do this? I am not robbing a bank, I am not murdering anyone, why do you always do this?" As if robbing banks and murder are equally punishable by angry door and bed frames. And I always seem to encounter their wrath when I am in a hurry or carrying entirely too much on my lap. And whacking into still and mounted furniture or walls causes the stuff to fly off of my lap or my body to lurch forward. I act really disgusted for about two minutes, pick up the stuff, and inevitably realize I need to slow down.

I embrace slowing down on a large scale quite well. I know now to take life one day at a time and that baby steps really do pay off in the end. But, the day to day tasks, the errands, the cleaning, and the cooking, well, I don't pace myself very well through these activities. Everything takes longer now. It just does. With each push of the vacuum, I also have to push one of my wheels and then the snake like cord wraps itself all around my chair and entangles itself in my wheels until I reach down, fight it off and throw it out ahead of me. Carrying things from one room to another is simply a pain. I make multiple trips for the silliest of items. If I hurry too much in the kitchen, a bowl shatters or food splashes everywhere. I can honestly spend most of a day picking up after myself and carrying junk. An errand becomes a nightmare when another car parks way too far into my space, leaving a tiny bit of room for me to shimmy my wheelchair through so I can almost fall getting in my driver's seat. Then I have to push my wheelchair back a few feet, back the car up, and pull it over and forward, open the door again, pull up the wheelchair, and then finally pull the car all the way forward, just so I can put the chair back in the car. Gone are the days when an errand is just an errand. Sometimes I allow these petty little instances to rule my mood. The stress takes over and I don't stop it. I wake up with migraines and a level of irritation that is simply not healthy. And although they are few and far between, they still happen and still consume me.

Recently, a day just like this occurred. I silently raged about how long it takes me to do everything and how I will never move forward in life if I can't do simple tasks efficiently. I told off the kitchen table, the garbage can, and even the laundry detergent. But, then nighttime came, I took the dog out, and like I do every single night, I looked up at the sky. I love to take her out at night. It is so peaceful and calm. There are only a few cars out and about, windows are dark, except the few lit by the soft colors of the television. Other dog walkers are out and we pass each other and nod, knowing how lucky we are to be in this club of night walkers. And then I always pause to look at the sky. I see brightly shining stars quite often, a blazing moon, or just a sliver of moon, small, but still glowing. Sometimes it is so black I can't see anything but its vastness. Whatever its state, the sky always amazes me. The second I tilt my head back and look up, all of my worries disappear. I realize how small I am, how I am just a tiny speck in this magnificent world. I see how little my speed matters. And this particular night, the stars were bright and sparkly, almost putting on a show just for me. I continued to tilt my head back in wonder and Belle continued to sniff. Neither of us in a hurry, both of us content. I wasn't worried about my speed or accomplishing a mundane task in record time, I was simply in awe.

I need to remember how fortunate I am to be forced to enjoy stillness and time. Banging into things is a wake up call reminding me to slow down and notice my surroundings. These petty frustrations are just that, petty. I fought to be alive and experience moments like running errands and cooking my own food. The same awe and wonder I have for the sky is the same awe and wonder I should have for my own life. Every moment is a gift and slowing down is a lesson in gratitude and awareness. So, when I think my bed is mocking me, really it is just jumping out to remind me, Hey you, quit moving so fast, you are starting to take your life for granted. Remember the days you couldn't get out of me? Remember those days and be happy you are just bumping into me. 

Normal

"Wouldn't take nothing for my journey now." -Maya Angelou


I am reminded by my therapists on a fairly regular basis that I missed out on a decade of 'normal development'. While I was experiencing my years of illness and recovery, others my age were experiencing 'normal' life events. I know and understand the intention and thought behind this statement. It is meant to alleviate the stress I feel when I express worry over my life as it stands now. I sometimes feel behind or out of place or different from all of my peers. I feel like I've been in a dark abyss while everyone else moves gleefully along. But, while I know these feelings come and must be addressed, I also do not believe I am really and truly all that different from everyone else.

I believe each of has a journey, a life experience worthy of admiration and respect. And if I compare myself to the small group fluttering around me, I might feel a bit excluded or behind, though ridiculously untrue. Each of us has something to offer and no one has it easy. When these feelings creep in, I look at the bigger picture, the larger world and I see my path and my life is just that, my path and my life. I am sure all over this world there are other twenty somethings with far greater struggles and superior levels of achievement I can't even begin to fathom. I know there is suffering and marginalizing I can only read about and will never experience, simply because I am lucky enough to be born in my country. I can't begin to compare myself, nor should I.

Life is not about comparison or competition. It is not about meeting a check list of experiences by a certain age. Life is about individual experience and finding the commonalities that lie in individual purpose. While each of us has a unique gift to offer, a unique journey to forge, we all have a purpose to offer the world. And that purpose is found through and with the help of our singular path. What we contribute to the greater good or the common good are the lessons we have learned along the way. This is our common charge, our common purpose. And without our difference or diversity, our world lacks beauty and strength.

Instead of loathing my separateness, I choose to acknowledge my experience as a gift for understanding. I choose to be grateful for all of the events in my life, even if they are not found on a 'normal' check list. The word normal is dangerous. It decides that one is better or more common or more acceptable than another. I believe every life is precious and purpose filled, whatever the path. Just getting up to face the day is a struggle and a profound achievement for some and should be honored with the same dignity a diplomat or any other grandiose position in life is honored. I am 'normal' because I have life experience, a personal journey, suffering, joy, and struggle. None of these things brought me to a place of comparison or competition. They led me to a place of compassion, love, and humility. And if that isn't normal, than I prefer to be anything but.

My Reflection

On one of my regular walks with my dog, Belle, we always pass a small section of local shops. One is a pilates studio, one a clothing studio, and one a stationary store. I occasionally look up to see the window displays, but very quickly put my head down. I need to pay attention to the uneven sidewalks, debris, and any cracks in the pavement. The slightest bump can suddenly halt my chair and jolt by body forward, sometimes causing my chair to tip and even better, cause me to fall out of my chair. But, the other day I noticed another reason why I put my head down so immediately. The pilates studio has very clear and plain windows that are almost mirror like. I actually don't look in mirrors very often. Very soon after my accident, I realized it upset me in a way that made me very uncomfortable. It forces me to see myself as a paraplegic or disabled person. I constantly shift around in my chair trying to make the refection better, even pushing myself up to see what I look like standing again. I notice all of the results of my injury, the skinny legs, swollen ankles and feet, the protruding hips, and only want to look away and change the thoughts rapidly running through my head.

On my walk, I can see myself everyday in the reflection of the pilates studio window. See, I even call our outing a "walk." In my head, I am not paralyzed. I simply don't picture myself this way. I feel as whole as the morning before my accident. My brain knows I am paralyzed. I know the physical differences blaring in my life, but somehow my spirit, the core of who I am, has not received this message. I dash out of the basement door in the morning and feel the warm blood pumping through my arms with every push of my wheels, much like feet hitting the pavement. It is fluid and normal to me. I pause to let Belle sniff, check for bags in my pockets, and really don't think about my body in the wheelchair. Yes, I accommodate a new way of life and have new ways of doing things, but I still feel like myself most of the time. And then we pass the pilates studio and I see it. I see the reflection. I can see my shriveled legs locked in my wheelchair and my upper body doing all of the work. I see my giant wheels and the chair itself. For some reason, it is always catches me off guard. It makes me think, "oh yeah, you are paralyzed, Sarah." I know this seems funny to write because I spend so much time caring for my body and all of the issues that accompany such a lifestyle, but the visual of it is far more alarming than I am ever prepared to see. I don't think about all of the extra equipment attached to my body until I bump into a door or have to squeeze onto an elevator. After I saw my reflection in that window, I started shedding tears behind my sunglasses. I really wasn't sure why and I tried to hold them back for a block or so, but then I just let go and let them flow. Over the years, I have learned that crying is courageous. It is an admission of sadness and pain and it takes bravery to allow myself to admit these feelings. So I cried the entire walk and all the way back home. Upon our return home, I wheeled back to my room, where the only mirror I can see myself in is located, and stared at myself. And while I know the physical does not matter, I still tried to force acceptance. And then I discovered something. This is just my body. This reflection is the vessel I reside in and not who I am. And yes, it is broken and mangled and difficult to accept, but it is not who I am. I care for my physical form, respect, and honor it because I need it, but it does not limit me. Who I am inside, the person in my head, my spirit, these things are not scarred and bruised and swollen and shattered. In fact, they are for more complete and strong and brave than long ago when the outside wasn't so ravaged. I decided it is okay to be shocked by the outside because it proves how healed and whole my inside truly is and continues to be everyday. I manage to live with my injury, but it does not have to define my spirit and my will. My legs may not work, but my wings are fully intact and I will continue to fly.

Favorite Conversations

This past week I've had two notable conversations with two different people. One of the conversations left me speechless and the other conversation encouraged optimism and hope. I always say one of the benefits of my condition is the ability to see humanity at its best. Many people stop me when I am walking my dog to tell me how great it is to see me out and about and how much I encourage them just simply walking my dog. Runners clap and cheer for me as they pass by and always share a few kind words. So much so, last summer I was down at the river, walking Belle, and I noticed an unusual amount of people cheering and yelling. They were saying things like, "Way to go, keep it up, you are almost finished!" I thought maybe it was a nice day and everyone was just really happy. I was so confused until I saw cones, signs with mile markers, and a finish line in the distance. I was apparently dead last in a race.

However, I also have conversations that boggle my mind and leave me chuckling. I rarely, if ever, feel angry or judged. A lot of people say a lot of silly comments, not harmful silly, just funny silly. I lead with kindness, rather than trying to prove something or correct them, but sometimes I can hardly speak for fear of bursting into nose-snorting laughter. My medical services company, a company I've worked with for twelve and a half years now, called this past week. I am in regular contact with this company because I order supplies or ask them to set up services I might need. They are hired by my insurance company to provide such services. A representative, with a nursing degree,  called and stated she needed to ask me a few questions. I obliged. She asked about the performance of my cleaning service, if I recieved my supplies in a timely manner, and then she asked me a question I could not believe I was hearing. She asked, "And one last thing, are you still using your wheelchair?" I paused and said, as kindly as possible, "Yes, yes I am. I am paralyzed." Then she asked, "Well do you know how long you will be using your wheelchair?" This time I really paused because I honestly didn't know how to respond. I laughed and replied, "Well, I am paralyzed from the waist down which means I can't walk or feel my legs at all. So, until there is some sort of miracle cure, I will be using a wheelchair for the duration of my life." And then she said this, "Oh, well okay, please let us know when you don't need one anymore." I could only say, through giggles, "Sure thing, I'll call you right away." I did not stop laughing for days. Every time I recounted the story, I laughed even harder. I told my doctor and he was left speechless as well. I guess she knows something about paralysis I don't know.  I guess I should also appreciate her optimism.

I also have conversations that teach me lessons. Like the conversations I regularly have with my friend Ashlea's four year old daughter. Every time I see her daughter, Kate, she asks about my legs. She wants to know why I can't find a doctor to fix them and asks if I am very, very sure I looked everywhere for a good doctor. I never, ever mind these questions and always try to explain to her that it isn't the doctor's fault, they are just broken and don't work. She usually asks, I answer, and then she is on to the next thing which is usually discussing favorite princesses, favorite colors, and climbing up my wheelchair to sit in my lap. She usually only mentions it once, still asks me to get her drinks and carry things and completely accepts me as I am. A few days ago, she asked again. This time she questioned, "Are you sure, are you really, really sure your legs are broken forever?" I said, "Yes, I'm very sure they are broken for a long, long time." Then she quietly said, "I just want you to be able to go up and down stairs." While trying to hide my tears, I replied, "I do too, Kate, I do too." Later,  I used the restroom and told her I would be right back. She asked, "Hey, how are you going to get out of your chair to go to the bathroom?" I told her I would just use my arms and then demonstrated how I lift myself. She thought for a minute and with as much authority as a four year old can muster she said, "Well, you need to be careful, I don't want you to hurt your legs any more just in case we find a doctor to fix them!" I told her not to worry and promised to be careful.

Kate reminds me every time I see her and hear her innocently hopeful and optimistic questions not to let go of hope and determination. She has no idea how much she teaches me and reminds me of such powerful lessons. She never gives up and honestly believes one day I will walk upstairs with her and play with her dollhouse. I need her questions, her spirit, and her innocence. They come in handy on the days when I am running low on optimism. The world is simple to her, doctors fix what is broken and prayers are answered.