Wednesday, December 5, 2012

Favorite Things

Oprah Winfrey once said she used to dread her Favorite Things show.  She said she felt guilty for the lavish materialism and felt foolish for encouraging adults to become utterly hysterical over things. Then, one day, Oprah had her own "aha" moment. It finally occurred to her that her Favorite Things show wasn't about the vast and ridiculous amounts and types of gifts. What the show was about, what it really meant for people, was the chance to discover, maybe for the first time, and to believe that just as much as bad events happen randomly and without warning, good events, good moments, good days happen equally as much and equally without warning. Oprah said she upped her enthusiasm and hosted the show with a brand new attitude because she now realized why there were so many tears, people falling to the floor, strangers embracing and crying together, something good happened in their lives. Something out of the ordinary struck like a bolt of lightening and left a deep and penetrating scar of joy. She believes everyone leaves with a tiny bit more optimism and a tiny bit more belief in the good.

After a traumatic accident, followed by a decade of illness, I began to give up on the good. My twenties were mostly spent suffering and struggling to stay alive, struggling to want to stay alive. I watched as peers headed to and from fraternity parties and endless nights out. I saw a life after college filled with sports leagues, dinner clubs, football games, tail gating, summer evenings at baseball games or playing softball. I watched as well and able bodied people woke up early, dashed to a job, returned home only to run or put on different clothes for an evening out. I watched all of this and wished so desperately to belong. I wanted to feel free, to feel as if I was choosing everything I did every single day. I wanted to feel the goodness life has to offer. However, my body was in charge, and its illness and needs ruled my life. I escaped its prison time and time again, only to be forced back into the solitary confinement of illness. The more I tried to be normal, the more my body fought against it. I saw many good things happening to so many good people, marriages, babies, exotic and interesting vacations, and countless adventures. I longed to attend music festivals, once again camp and sleep under the stars, hike over muddy and rocky terrain, and canoe and swim in a lake. I wanted to put on three inch heels and dance the night away in a hot and sticky night club. The twenties seemed like a time of freedom and fun, filled with countless adventures and milestones. My twenties were not filled with these things. I, instead, spent countless days in the hospital, had a blood transfusion the week before I was in a wedding, tried desperately to work more than twenty hours a week, all as my body continued to fight every urge, every desire to be a normal twenty year old girl. The optimism usually associated with this free and energetic time of life was little, if not gone for me. Over time, I expected bad things to happen. My loss of optimism or the expectation anything good would happen slowly disintegrated. I figured it was just easier to expect the worst rather than deal with the disappointment. But then, I had a night alone on the floor, where I had no other choice, but to beg and expect mercy and grace and it was granted. In that moment, I chose, once again, to try, even just a little bit, to believe in the good, believe in hope. It took a long, long time to eliminate the hateful and negative noise my active and ever present thoughts generate, but slowly and steadily I started thinking positive and good thoughts. I expected things to get better, I started hoping for a future. And with this attitude change, came a life change. I found the freedom I was searching for in the acceptance and respect of and for my condition. I became my own advocate, fighting for my own good. I also surrendered to my situation. I stopped pushing against the stream and started flowing with it. I am acutely aware I missed many regular, developmental life experiences, but I am also aware I have experienced, witnessed and learned a depth of irreplaceable knowledge and lived through many life altering experiences, only coming out stronger, more hopeful, and more aware of what is truly important. Mostly, I've learned to expect the good. Sure, the bad will happen, but so will the good...and that is the important part.

Last Saturday evening, after I returned from an immensely generous and equally thoughtful early birthday cooking lesson, given to me by one of my best friends, Kelly, I received a text from Eileen asking me to read a text she was forwarding to me from her brother. Eileen's younger brother, John, is very involved in The Miami Project to Cure Paralysis.
In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is the world’s most comprehensive spinal cord injury research center, and is a designated Center of Excellence at the University of Miami Miller School of Medicine.  The Miami Project’s international team is housed in the Lois Pope LIFE Center and includes more than 250 scientists, researchers and clinicians who take innovative approaches to the challenges of brain and spinal cord injuries.
He asked Eileen if we could meet him in Chicago, on Thursday, to attend one of The Miami Project's fundraising events and if we were able to attend, the rest was on him. His generosity, thoughtfulness, and kindness made me weep and smile, all at the same time. Kelly, the oldest hen, would also attend the event, making an already wonderful night even better. The two other girls are away at college and Kevin works late into the evening. They were sorely missed, but very much there in spirit. My very sweet mom and my dog's favorite person, other than me, offered to keep her so I could go and feel comfortable knowing Belle was in the most loving and caring hands. My parents knew how much I needed this and strongly felt I deserved a get away after my long fought battle and felt it was the least they could do to watch Belle. The days preceding our adventure my thoughts were so good, so filled with hope and joy, I thought my head would burst. I wouldn't let a negative, debbie downer thought to even slightly cross my mind. To think, just a few short months ago, I wasn't sure if I would ever receive a clean infection report and now, in a few short days I would be going out of town, for the first time in seven years. Yes, it was just a day and one night and only a short distance away, but it is still out of town. We left early Thursday morning, just like we used to for dance competitions, only there were only adults in the car, no little girls. Time moves on, things change, but love stays the same. Even though the car was empty by at least four, it was still filled with the same laughter, energy, and life it always was. I could look back at anytime and see the memory of girls with Ipod buds in their ears and if we listened closely enough, we could hear them cackling. True to form and tradition, we talked the entire drive, never once turning on the radio. When we finally arrived in Chicago, we pulled up to our beautiful hotel and quickly noticed it was directly across the street from the event venue. How thoughtful.

Then, Eileen pointed out we were a block away from her brother-in-law's brownstone...the one with the twisty steps.

As we walked to get a quick bowl of delicious potato soup and a harvest salad, Eileen also made me stop and look at a restaurant we were passing. I, of course, was too busy craning my neck to see Ted Baker, Scoop, and the Waldorf Astoria, to even notice the restaurant. But, as I took a minute away from the big and gorgeous city all around me, and looked at the restaurant, I saw it was the restaurant we went to the night after Thanksgiving all those years ago.

The name Carmine's also has great significance to my journey...sometime soon I will share. 

We ate here the night after, the same uncle, who was now treating us to an extraordinary evening, rescued me from the genuine, but futile attempts of the I've had too many Manhattans dads, and carried me safely down the stairs of the brownstone and outside to level ground. It is the same restaurant I took six Advil, wore a wool turtleneck sweater and a down puffy coat and drank hot tea because my fever was so high, and tried to pretend as if nothing was wrong. And now, here we were, several years later, only this time I was well. It took days for the gravity of this moment to fully absorb, but eventually it did and now I can't let go of it. I can't let go of the joy, relief, humility, love, and freedom that come from visiting a place where I was once so sick, so afraid I wouldn't wake up or make it through another day. I just can't let go of the body chilling, soul awakening feeling that comes with a moment like this and I don't want to. Later, we primped and prepped for the fun evening ahead and as Kelly did my makeup and Eileen straightened my hair, I took a breath, I took a breath and realized, here it was, it was happening. A normal life experience. Girls getting dressed and all fancied up together. I may not have had it as much as I should have in my twenties, but if that sacrifice led to this moment, it was well worth it. The love I have and feel for the two people making me feel like a Real Housewife in a hotel room, is immeasurable and heart bursting, and to share this moment with them is worth a thousand years of waiting and sacrificing.

Kelly and me. Be still my heart. Watching her grow up has been an invaluable pleasure and I am forever grateful to her for always, always, understanding me, believing in me, trusting me to give advice, giving her own empathetic advice, and being the best darn fashion consultant that ever lived. If you think her face is beautiful, you should see her soul.

And Eileen. I think it is perfect she is peering over my shoulder. Many years ago, she stood for hours, with her arms crossed, forcing herself not to help for my own good, while I practiced folding and unfolding my chair and lifting it in and out of my car. She has always been behind me, supporting me, cheering me on, loving me, and most of all helping me to set and achieve the most difficult and life changing goals.  She never is anything but positive, even in the most trying of situations and constantly guides me towards the good. Love doesn't begin to describe my feelings for her. She also completely understands why I need to bring three pairs of boots for one night. 

When we arrived, I was kindly greeted by another person with a disability. It was a young man and he was with an entire table of guys with paralysis. I'm usually the only one in the room in a chair, but tonight I was not, I kind of fit right in. The evening was filled with fantastic food, flowing drinks, and extraordinary company. Each person knew a bit about paralysis. There was little I had to explain. Sitting down to talk to me, instead of standing while my neck aches from looking up, was the norm. The awareness was astounding. We were presented with mountains of information and floods of personal stories about the groundbreaking research and discoveries The Miami Project is currently funding. I urge you to check out their website and see for yourself. To think there is a possibility of walking again is difficult and scary...I don't let myself go there much. I feel I need to be most comfortable as I am and not cling to false hope. But, for the first time, I truly felt the possibility was possible. My dreams are now different and dancing again has inched its way back into the forefront of my imagination. I still remain content and confident in my current condition, but a little hope doesn't hurt now and then. I let myself believe in the possibility again. The night continued to amaze, not only because of the progress towards full recovery, but because of the conversation, the people, and the sheer enjoyment. We only snapped two photos because we couldn't stop long enough to pose. There was far too much fun and excitement to pause. Poor Uncle John will remain a mystery, for now. After what was an already magical evening, we went out to a bar. At first, my normal anxiety about bars crept in, I even moved away to a corner thinking I just had to get out of there, but then as the loving and caring people I was with found a more than comfortable location with chairs all around, I began to forget I was in a bar. I looked across and saw Kelly and Eileen and Uncle John. And it suddenly hit me, it didn't matter where I was in life, mentally or physically, these are three of the people that were there all along in one form or another. Through all of my struggles, countless cups of tea on ninety degree days, they were there, smiling just as big and bright as they are tonight. Sure, John wasn't there for the everyday nitty gritty like the girls and Eileen, but he was there, he was there enough to notice and to plan something so thoughtful, so needed, and so good. Something good that came out of the blue, unexpectedly, as if I was on Oprah's Favorite Things, all because of him. The possibility of good in my life is forever renewed.

After we returned home, I sat alone in my room, reunited with my happy dog, and cried. I cried and thanked everyone I could think of...I sat crying on my bed saying names out loud over and over. I couldn't stop remembering all of the good and all of the acts of kindness along the way. And as I struggled for breath amongst the sobbing, I shed my fear, my trepidation, and mostly and finally my expectation of the bad. And the gratitude and jubilant, hopeful wonder, they don't come from the material side of the trip, they come from the love, from the kindness, from the thoughtfulness....from the possibility that good things really do happen. So go ahead, expect them to happen and they will. Don't let the bad moments hold you back, they are there just as much as the good, and sticking them out and waiting for the good makes it all the better. Trust me, I, too, was once a non-believer.

Tuesday, November 27, 2012

Gratitude...for now

The entire Thanksgiving holiday I meant to write this post. But, I came down with a cold and have been barely surviving each day. I don't mean barely surviving in a really bad way, just in an over dramatic, I am so tired from life, way. It has been years since I have been worn out from regular happenings and regular illnesses like colds and flus. It almost feels like a luxury. However, like all healing, balancing my new found freedom with my desire to stay strong and healthy, takes time and patience. I won't always get it right and when that happens, I just give in and sleep. Each night I start to write and feel my eyes and body sink and I give in to the healing and the resting.

This is quick and funny story of a moment along my dark and scary path, that I paused and took a breath and realized everything might just be okay. I have so much to say about the power of gratitude in my life, but this is just a tale, just a moment, when I remembered to be grateful.

Gratitude is tricky. I think it is easy to be grateful when everything is going our way. We start feeling lucky and blessed and act as if we have finally discovered the key to life. We have so much, we start taking our blessings for granted. But, inevitably, something happens, throwing us off course and into a tailspin of worry and self pity. And whatever that thing may be, it grows and festers, chipping away at the once easily found and easily cherished moments. But, it is time like these, when it seems gratitude is a fleeting ship in the night, we find it lurking in the shadows and creeping slowly into the light. And this kind of gratitude, the kind that must be sought out, that has to be found on a dark night amongst the ruins, grasps so tightly, it is all you can see for miles and it is so worth the effort.

A few weeks ago, something happened that hasn't happened in eleven years. The gravity of what happened trickled ever so slightly until my cup of optimism was overflowing. I fear actually typing the words, as if it will some how jinx the outcome, but I am sure now, I am sure the results are around to stay. For the first time in eleven years, I am not infected with anything. I am not on any antibiotics and have good blood reports and negative wound cultures. I may have hiccups along the way, but the toughest battle is finally over, the beastly infection is gone. I am working on the long and involved tale of my infection and the surrounding tales of the massive impact it had and has on my life and will post much of it in the coming weeks. Right now, I am letting the freedom and relief sink in and enjoying life without illness. And as I said before, I may have a cold or the flu or feel overwhelmed by this situation or that, but I am here and I am well.

Over the holiday, I spent time with old friends and we reminisced about past Thanksgivings. I spent many Thanksgiving holidays with my dancing family because one of the largest competitions, the Oireachtas, is held over the holiday, beginning Friday morning and ending Sunday evening. Several years ago, during the throes of my infection, I traveled to Chicago with the Johnstons and joined their family for the actual Thanksgiving Day meal and then we all stayed and watched Kelly compete in the competition over the rest of the weekend. But Thanksgiving night was a night to remember. I took a ton of Advil before we left that morning to stave off a fever. By the time we arrived in Chicago my temperature crept back up and I had to take more Advil and rest for a minute before throwing on my sick armor, thick sweaters and bottles of Advil. We were all heading to a beautiful home for a gorgeous dinner prepared by Eileen's sister-in-law. Her family lived in a brownstone with a wrought iron gate. As we walked, bundled in hats, gloves, and scarves, from our hotel to their house, I noticed how stunning my surroundings were. I specifically remember noticing, through the frosted windows, families gathering, hugging, laughing, passing food, pouring drinks, and joyfully personifying a picturesque, movie-like image of the holiday. I couldn't help but pause and take in the magnificent architecture housing the beautiful and idyllic images through their wrought iron, well cared for, casement windows. For a few moments I forgot about my infection and illness and soaked in the beauty and imagined the football game buzzing in the background and music humming ever so faintly.

The houses were brownstones in Chicago. So they had steps. A lot of steps. And not just a plethora of steps, twisty, swirly steps. Before dinner there were many participants volunteering to carry me up the winding and steep stairs. The living and dining room were on the second floor. The evening and setting was comforting and lovely and made the stair climb very much worth the effort. Dinner was typically perfect with all of the traditional fare and traditional holiday drinking and reveling. We laughed so hard our cheeks hurt. After hours of celebration, bellies were full of turkey and kids were exhausted. We all decided to head back to our hotel. Quickly we realized many of the helper men had a few too many Manhattans to carry me back down the stairs. One of them did try, but picked me up and had to put me right back down again. To say we were all laughing hysterically would be an understatement. Thankfully, an uncle, who refrained from the Manhattans or from having too many, came to my rescue and carried me safely downstairs and outside. Eileen's family walked with us to the hotel and so did their St. Bernard, Scooby. We walked in the streets because it was past midnight at it was snowing. We didn't need as many hats and scarves and gloves...everyone seemed to be warm from the inside out. As we made our way talking entirely too loud and laughing way too much, I realized I was having a moment I watched earlier. I was with people I loved, sharing joy and laughter and love. And yes, we were in an uncommonly beautiful place, with perfectly timed snowflakes, but it wasn't about the spectacular buildings or amazing sky or even the feeling of wet snowflakes on my nose, it was about the people. The kids running ahead cackling and women walking in the back talking loudly and quieting the kids...the kind men offering and trying to help me down the stairs, but clearly unable to walk down themselves...the feeling of a filling dinner shared with familiar and close felt just right. I forgot about how the fever would spike ten minutes after we would return and I would spend the next two hours huddled in a ball, shaking, waiting for the fever reducer to begin to work so I could finally get a few hours of sleep. I forgot about all of the pain and the hurt for just a moment and was grateful. Grateful to have these few moments of peace. Grateful for the laughter, the Manhattans, the snow, and for my life, no matter how icky it was at the moment. I finally fell asleep with a smile on my face and the memory of the cold snow gently falling on my eyelashes, knowing I would be up in a few short hours wondering why I was dealing with such junk, but for a bit I was happy and that would be enough to make it through to the end. I know it's true because I did it. I made it to the end.

When I finally allowed my new, good news to sink in, I did and do think about the struggles, but I also relish in the good and the sunshine. The memories of what sustained me, not what defeated me dominate my mind.

There are so many moments, so many memories, that caused me to pause and to forget the pain for a bit. I am grateful for all of them. I have so many stories to share, past and present. So much good is happening and continues to happen and I will be stopping by a lot more. The last few weeks have been overwhelming in so many ways, but I am finally finding the ground again. I have much to share and have been writing a lot. This week I am doing something I can't wait to share. Look for pictures and stories this weekend. It is very special and very close to my heart.

And lastly, speaking of gratitude, I want to thank all of you. This little blog wasn't in the plan and just sort of happened mostly because of my friend and source of inspiration, Kelle Hampton. She brought back to life a part of me that was dead for too, too long and she brought a lot of you to me...I can't thank her enough. Your kind words and thoughtful messages have come at some of the most crucial moments. And many of you are here for many other reasons and from many other places. I thank you equally as much. It is a blessing to be a part of your lives for just a moment. I feel honored and humbled to read your words and comments. Thank you to all of you and see you soon. And remember to pause and look around...we are all living in a storybook.

Sunday, November 11, 2012

The Power of Empathy

Come, come, whoever you are, 
Wanderer, worshiper, lover of leaving. 
It doesn’t matter. 
Ours is not a caravan of despair. 
Come, even if you have broken your vows A thousand times. 
Come, yet again, come, come. 
~Inscription on Rumi’s tombstone

Empathy, as the Merriam-Webster Dictionary defines it, is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this. I think the last line, the capacity for this, is the most important and the hardest to achieve. Before I was paralyzed I never really thought about paraplegics, quadriplegics, or really any other disability. I knew disability existed, I knew people with disabilities, but I never truly took the time to learn to empathize. I was never unkind or hurtful, I just maybe thought about what it would be like to be disabled for a fleeting second and readily returned my attention and focus to probably my biggest worry at the time, which pair of shoes I should buy. I thought the problems I had were huge and really nothing could compare. I was young. 

One of my first memories of rehab is sitting around a large room with fellow patients tossing a ball. I assure you, none of us found this amusing. The therapists gleefully encouraged us to randomly toss the ball around the circle...I think the randomness was supposed to be the fun part. It was not. For a second, after I threw the ball, I stepped outside of myself and looked around the room. I saw college students like myself, young mothers, young fathers, uncles, aunts, doctors, lawyers, best friends, grandmothers, and grandfathers. I scanned every one's eyes. I saw bodies struggle to toss a light, rubber ball and eyes quietly fill with tears as the once capable hands, timidly released the silly toy. The pain living and breathing behind the blue, green, brown, or hazel exterior was common. Grief, fear, gratitude, and humility flowed gently with the tears. Just weeks before, we all were free. Now, even though life twinkled ever so faintly in each of our eyes, the bleakness of confinement, the despair of feeling trapped, took over with a vengeance. As I sat, I slowly felt the ripples of empathy. My thoughts turned to our commonalities, not our differences. We were trapped together, all equally and passionately sharing the desire to be free. 

Day by day feeling physically trapped by my body slowly eased. I learned how to do most of the things I could do before. Some took much more time than others, but slowly the physical freedom returns. However, confinement remains an ominous presence. My body is always in charge. It makes my decisions for me. If I want to watch television, the position of my body and duration of time I rest on my side and when I turn to relieve pressure must all be considered. Food choice is a me, jalapenos dipped in nacho cheese at a football game is not a wise one. I am in charge of controlling my bowel and bladder, my brain no longer has control. I think carefully about what I eat and drink. My legs don't have any feeling, so my thoughts constantly stay with them, protecting and caring for them. I have to consider their well being in every situation. I must remember to prop my legs up and relieve pressure all throughout the day. Stretching is the key to proper alignment and must be done with diligence. Clothing choices and shoe choices are limited and difficult. Ramps and bathroom access and ease of parking all must be carefully planned before attending the mall, a lunch, a friend's party, church, a wedding, or a funeral. I could continue. Awareness of physical limitations sneak in and dominate my mind for days. These are all things I live with daily. I sometimes feel like I am going crazy because I constantly talk to myself, reviewing my check lists. There are days when the loss of freedom is more apparent than others, but mostly, with a lot of practice and patience, these check lists become second nature. Most days, I push forward with ease.

"I just want my freedom back." This is a text I received from my dear friend Michael this weekend. Later, he sent another message expressing his eagerness to drive. He understands the way out of his physical bondage. He is pushing forward and willing to head out the door, check list in his head, and attempt a giant stage of freedom. Driving awakens a deadened and defeated part of the spirit. To regain the ability to hop in a car and go after months and month of relying on rides, drivers, and other forms of transportation is simply priceless. The day I picked up my newly fitted, hand control car and pulled down on the control as it lurched forward stays permanently in my mind. I finally stopped lurching, found the express way, rolled down the windows, filled the car with music, and had the ride of my life. My hands can still feel the steering wheel. Later, I drove out to see the hens and Eileen and everyone jumped in the car and we drove and drove and drove. Eileen said, "Oh Sarah, don't you just feel like yourself again? And Sarah, you are just you when you are driving, no one has a clue you have a disability. " She put my exact feelings into words. For the past year, my wheelchair, physical limitations, and variety of needs presided over every moment of my life, but this day, I was free of all of it. I didn't have to even think about anything, but the road and safety. Driving and mastering folding, loading, unfolding, and unloading my wheelchair spurred a furry of steps towards independence. I finally had the ability to practice so much more. I secured a great job that I loved, moved into a fun apartment with a great roommate, and was a tiny bit excited about life. Hope resurfaced for a bit, even started to swim, but quickly it sank. My illness started and that feeling I loathed, confinement, ferociously roared its way back. But this time, I couldn't master the physical challenges, the infection was in charge. My job became a luxury and extreme illness became a way of life. I spent countless hours in my bed and in my apartment. I would fight against the clutches of this nasty and persistent blood infection and venture out, doing my best impression of a thrilled escaped convict. Solitary confinement is brutal and losing control over the body is dehumanizing. I fought feeling trapped constantly, until one day, after years and years of fighting a losing battle,  I decided to surrender. I risked my job, my doctor, my family, my friends, and mostly my sense and need for control. I just let go and gave in and listened to everything my body needed. When I started to allow my body to be in charge, feed it the food it needed, give it the rest it craved, and advocate to find it the right medication it needed I started to notice how much control I actually gained. Sure, I had to become an advocate for myself and care for myself in ways I just didn't want to, but slowly I started to see how forward momentum and healing would become a way of life. Yes, I have to be healthy and strong and wise, but I am not complaining about any of these things. These are all things that free me to live longer and better. And as I made the lists I needed to make in order for events and appointments and coffee with friends to go smoothly, instead of resenting this effort, I quickly discovered I became more aware and more present. Because I put so much energy and thought into my appointments and events, I started thinking about others and seeing how important their check lists and needs are. Sure, my stuff might be about my disability or an illness, but who knows what someone else is carrying. I really don't have a clue. And when I quieted my mind and really thought about another person's struggles and let it sink in deeply, I awakened to the idea that we are all trapped. We all feel confined by something or another. We all feel a deep and longing desire to be free and to be ourselves. We want to rid our minds of others' opinions, we want to choose where we go and what we do, we want to love who we want to love, and wave our own personal freak flags with pride. (I stole the term freak flag from the Luke Wilson character in The Family Stone.) But, instead of feeling like we are driving and have the wind rushing through our hair, we roll up the windows, turn on the air conditioner, put on what ever armour we wear, and assume the position of perfection. We show the world what we want it to see. Instead of confessing something is just too hard or too much because of a hectic week, we cover and smile and nod and exaggerate just how happy we really are. A life in a wheelchair or long term illness creates a physical and emotional sense of vulnerability, that at first seems harsh and cold and ridiculously unfair. But, as time goes on, an awareness of others and their vulnerability heals it. I see everyone hides behind something and presents the picture he or she wants to show the world. I see how concerned everyone is about shattering an image or hearing a negative word. I see forced smiles and relationships lacking any real depth because the surface is only what is important. I see everyone taking others' moods or needs or feelings personally and further trapping themselves into a tunnel of insecurity. And once I started to see the suffering and self loathing we all share, I saw my wheelchair as a ticket to freedom. I couldn't worry about things like these anymore. I had to do what was best for my body, my spirit, and my mind. If people criticize me or don't understand why I have trouble or emotional turmoil over an issue or a place, I can't spend time worrying about it. I abundantly communicate and tell everyone why I am late or forgetful, purely to help with understanding and empathy. The more we understand and see ourselves in each other, the more peace we share. We all feel trapped. We all feel less free than this person or that person. Celebrities have it all, don't they? The key is though, our limitation to see ourselves in others is exactly what traps us the most. Physical limitations will always be there, for all of us. But the emotional confinement, the protection of our ego, and the delusions of our own imaginations of what others are really thinking, feeling, or intending, we can extinguish all of these. We can do this by seeing ourselves in everyone else. It is as hard for me to ask for help in my wheelchair as it is for the able bodied person to ask for help. The guilt and pain and love and fear and insecurity I feel is the same everyone feels. It is all the same. There isn't a hierarchy. 

These last few weeks I felt so tired and worn out from my cold and my lists and my life. I had events to attend that wreaked emotional havoc. I felt alone and misunderstood. I started to feel trapped once again. But, then I remembered I was once misunderstanding and mistreating. I was once not seeing someones pain or suffering as my own. I freed myself as I started to see the similarities. I knew the trappings of anger, protection, and pain were to blame for the misunderstandings. We all have habits and tools for self preservation, but sometimes these tools and hardened habits become inhibitors to true and honest empathy. We must first,  have the capacity. Empathy is a practice, a way of being. It doesn't come in moments here and there, it is a way of life. Sometimes we might forget and fall prey to our most immediate and strongest reaction or emotion or trap, but if we take a breath and see the handcuffs we are about to lock with our harsh judgement and stinging opinions, we save ourselves and are quickly on our way to freedom. My wheelchair is just an obvious sign of insecurity. It is all of my weakness on display. I may not have a choice about the physical imprisonment it provides, however manageable,  but I do have a choice about the emotional constraints.  Because where I can see pain and suffering in another, I can also see forgiveness and hope and humility and love. I see we are all yearning for the exact same desires. We all need to be free from our disability to see others as ourselves and be willing to offer a caravan of forgiveness and hope to anyone and everyone who is willing and wanting to join. Because when we let go of our hard and practiced exteriors and surrender to our commonality and bear witness to our collective pain and suffering we see that contentment and joy and freedom rise from the ashes and we know why the caged bird sings.

Tuesday, October 30, 2012

Broken Refrigerators

My refrigerator broke today. Upon discovering the few remaining thin, little pieces of ice swimming in the water made from the already melted pieces of ice, I became a bit irrational. I spewed, vented and complained. Why does this stuff always happen to me? How am I ever going to get anywhere in life if I constantly have trivial and petty little issues like broken refrigerators? I'm a good person, I follow the rules, I do my part, why do bad things always happen to me? And for about an hour I continued to express my overwhelming distress and certainty I was going to end up alone and penniless all because my refrigerator is broken. I also decided I wouldn't be able to eat or drink for days. I was sure of it and I let my mom know all about it. With my neck hung low and moving like Eeyore, my mom and I hauled the contents of the fridge and freezer up to the vacant unit on the third floor with a working and empty refrigerator. A new one will arrive Thursday, but until then this is the best option. With a little physical work I started to overcome my mood and feeling of destitution. And then, as I was pondering my pity once again, I began to laugh at my silliness. I laughed because a memory of years ago, when I was so sick and so sad, flashed brightly, begging me to notice and linger. I saw myself, stick thin, lying in my bed, crying and bargaining, and pleading, "I just want to have regular life problems, please, whoever you who are, whatever your name is, just listen to me, I will give anything to be well again and have car problems, clogged sinks, broken doors, broken refrigerators, and even a regular illness like the flu or a cold. Please, I will give anything just to feel well enough and be healed enough to be outraged about these things." My laughter turned to pure joy. My wish came true. Over the last year, my wall leaked, my sink clogged, my car needed help, I had a cold, and now the refrigerator was broken. All regular, everyday life problems and I foolishly fumed about each one. I wasn't preoccupied with a temperature or my extreme weight loss, no I was just exacerbated with privileged predicaments. Obviously the frustration quickly wears off and I make the best of it, but the relief that comes with feeling well enough to be spewing about broken refrigerators, well it is freeing and exhilerating. One day I hope to be zen enough to brush everything off, but I'm okay with the silly frustration right now.

Oh and this evening, Mark and Daniel (Will and Jack) live on the third floor, right across the hall from my food and were kind enough to help transport cups of ice, sparkling water, and chocolate ice box cake, putting it in my cart and sending it up and down the elevator. Four people chose to take out dogs, get mail, come home, all while I was returning the cake and it was making its way up the elevator to a waiting Mark...we shared a wonderful laugh. Mark wondered what they must lazy he is to not just walk it down the stairs. He called himself Lazy Will. I haven't walked in so long I forgot walking the stairs was an option and insisted they do it my way. I'm still giggling. Sorry Will.

These were my worries today. Mostly, I was frustrated I wasn't able to do what I planned. That's it. Yes, I constantly torment myself about my health and finances, but I am thrilled to worry about them in the way I do now. No longer do I struggle with the unknown when it comes to an infection, I know it is over and the wounds are healing. I now worry about wellness and preventative health and keeping and building on the strength I do have. Agonizing over who will get my measly possessions, morphs into worry about how I will turn them into something lasting for the future and a long life. Sure, the unexpected will happen, I may wallow in bed, and security is always a concern, but to have a day where I only complained about a broken refrigerator, to have a year where healing is common instead of fleeting, well, it makes the unknown, the unexpected all worth it. To know I begged to have these small concerns and now I do, well it makes me believe even more and even better is possible. I may just be getting well, for real this time. I'm normal and over reacted to a stupid broken appliance, ended the day laughing about it, and a new one is showing up Thursday...I have regular life problems...finally.  Not a bad day at all.

Wednesday, October 24, 2012

Slow and Steady

Over the last week and a half I coughed until I was dizzy, ached everywhere, breathed through my mouth and blew my nose a million times. Exhaustion took over my body and weighed down my limbs so much it felt like giant sandbags were attached to each arm and each leg. As my sore throat lingered and my head pounded, I barely resisted succumbing to the frustration and irritation of dealing with illness, yet again. My brief encounter with self pity quickly turned to overwhelming gratitude upon the realization that I was just sick, just sick with a cold, not a blood infection, not a bone infection, just a simple cold. Comparing my current, everyday cold to the previous illness filled years, immediately forced a new perspective. I used to feel the same, or much worse almost every single day for the last ten years and the luxury of consistently feeling well again and like myself caused a brief memory lapse...I almost forgot how truly lucky I am.

Recently, coincidences and their true meaning sporadically occupy my mind. Do they occur through happenstance, or are they a part of a larger plan, or do they happen because of energy or prayer or thoughts or are they a message or a lesson begging to be learned? I am not really sure of the answer, but good or bad, I try to use them as moments to sit up, wake up, and pay attention. When I look over the past several years, especially post accident years, I see many moments easily defined as bad coincidences or wrong place, wrong time moments. These experiences, of feeling blind sided by life, leave me questioning and denying a master plan or the idea there is a reason for everything. Believing suffering and misery are selectively bestowed upon people is an idea I am simply not willing to accept. I am human, bad things happen, they just do. But, if I take a minute, slow down, and pause, I also see the bright moments, the blaring joyful coincidences happening all around me. I desperately try to control the frequency of the good and the elimination of the bad, but I cannot. I can only be sure of my faith-the faith I will overcome, the love I extend myself and others despite how defeated or wounded I may feel, and the hope I pursue, instead of pursuing the fear of the unknown. I surrender to life waving the white flag of faith, love, and hope because I know these are the only weapons I need. Trusting in these defenses, allows me to persevere and succeed instead of crumbling and falling victim to defeat.

Immediately following my injury a chaplain visited often. By pure circumstance the hospital, where I stayed in the ICU, was in close proximity to an Episcopal seminary. And not just any Episcopal seminary, Sewanee, the University of the South. This is a seminary and liberal arts college I knew well and where I spent much time as a young undergraduate. Since it was the middle of July, most of the chaplains were doing their required hospital rotation. And because of my familiarity with Sewanee, I felt very connected to the chaplains, one in particular. Emily walked up to my bed and moved the curtain after she dismounted her motorized scooter. Emily was a beautiful, young, vibrant lady with a deep and loving heart and a melting smile, who also happened to be disabled. I am not exactly sure of her disability and it obviously doesn't matter other than she needed a scooter to help get around sometimes. Not only was Emily a student at Sewanee, she was also the daughter of my cousin's sorority sister and a friend of many of my closest and dearest friends. She popped by to chat multiple times a day and always stayed as long as I needed her to. On the last day of my two week stay, Emily came one last time to my bed side and held my hand, opened it, and placed a small, green and gold turtle in the palm of my hand. She looked my in the eyes and said, "This was given to me by a dear friend who told me to look at this turtle and remember the story of the Tortoise and the Hare. Days will be tough and painfully slow and sometimes the end or the light will seem so far away you want to give up, but don't, instead remember the tortoise and remember that slow and steady wins the race."

After I was released from the hospital and returned to college, I couldn't wait to travel to London, England and visit two of my favorite and best camp friends. We planned this trip before my accident and I was going to go through with the plan. We visited Windsor Castle, Buckingham Palace, Burberry and Harrods, had tea at the Ritz, and sat thirty feet from David Beckham while he kicked the ball for Manchester United during a match of the European cup. We saw countless plays, devoured art and literature and relics at museums and cathedrals and traveled to Leeds to visit and stay at their flat and experience university life. I couldn't ask for a better trip with better people. However, as excited and overjoyed as I was, and believe me, I was pinching myself the entire trip in disbelief, I was also struggling with huge pangs of sadness and loneliness and fear. I remember one morning just sobbing in the shower while the hot water ran down my scarred back. I wept because I was, while having the time of my life, also deeply feeling the sting and realization that I was different, I was disabled. Traveling to another country is forever changed. Accommodations need to be made, friends have to go to extra lengths to make things work, and sometimes being carried up a flight of stairs repeatedly has to happen just to be a part of a group. My friends were more than accommodating and worked out every accessibility detail, but still, since this was my first time in another country in my newly paralyzed body, I was feeling detached and isolated. I didn't like the dependency I was feeling, I never like feeling dependent. Dependence leaves me vulnerable and exposed. I start to worry I am a burden and a bother to those responsible for me. It is a issue I still have, a feeling I cannot shake. I dressed every day and went along with the plans because I wanted everyone to see the smiling side of me, the side that laughs about her discomfort instead of giving into the tears. I pretended I was just fine while craving my home. I put a smile on my face and new boots on my feet and headed out the door desperately willing a feeling of comfort. After a night of tenth row seats at the Lion King and a good sleep, we headed out the next day to see a production of the Complete Works of William Shakespeare (Abridged) and were crossing the street of Piccadilly Circus when time stopped and I took a breath and paused in awe and wonder at the goodness of life. Before I left for England, I arranged to meet a dear, dear friend, Bayard, in London for a night. He was living in Spain and planned to venture over to London since we hadn't seen each other in months. If anyone was home at this point it was the other half of two of my closest friends, Briana and Bayard. Cell phones and international calling were still difficult to use at this point, so getting together with Bayard was proving more difficult than expected. We tried and failed to connect...several times. I was sad we weren't able to meet, but knew I had only four, short days left and I would soon be home. Katie and I crossed the wildly busy street that is ridiculously long and chatted away, not paying attention to anything but traffic. As we chatted and flew towards the other side of the road I felt a breeze, a gust of wind. And then, almost dream like and surely in slow motion, I heard a voice, "Sarah, is that you, Sarah, Bayard's friend, is that you?" I turned around, certain I was hearing incorrectly or was having a dream, but as I turned white with disbelief I saw a group of Bayard's teammates. They were equally thrilled to stumble upon us because they were struggling, along with Bayard, to connect with us. We exchanged phone numbers and information. Later that evening, I finally talked to Bayard and planned to meet up the following night. All of my friends and a few more, dressed up and hailed a black cab and headed into London to meet Bayard's team at a club. Everyone was giddy with excitement. Inside I felt like crying, but not because I was sad this time, but because I was so happy. So happy I would be seeing my friend. A person I knew loved me no matter what and had already been there for the tough stuff. He and Briana came to my bedside in the hospital and never left. Seeing Bayard would make it okay to be broken because he would know. I wouldn't have to tell him it was great, but it was also really, really heart-wrenching and painful. He would just know. He would be proud of me for being there, but know how much it hurt. His face would be familiar among all of the wild and unfamiliar spectacular chaos and take away the loneliness because he knew my new life, my new life in a wheelchair I was adapting to and working so hard to live with, he already knew. We arrived at the club and Bayard was outside waiting. He ran over and gave me a hug and I cried. I let out what was trapped and bottled inside and he didn't let go until I was done and played it off like we just missed each other. His friends, my friends, the music, the lights, the dancing, all were picture perfect for a night out clubbing in London. We all left, dancing, laughing, hugging, and posing for pictures in London streets at three o'clock in the morning. His friends walked away, headed the few blocks to their waiting hotel room and we loaded up once again in a black cab. As we were getting settled, Bayard came running towards us yelling, "Wait, wait!", I was not yet in the cab and pivoted my chair around and immediately saw Bayard with open arms heading towards me. He was asking us to wait just to hug me one more time. He knew I had four days left and wanted me to know it would be okay. On the way back to Katie's house I was quiet. I was thinking about the evening, the week, my trip. Thinking how eager I was to get to London with these new friends I made over the summer. Desperate to feel our bond and relive our memories and determined not to allow my wheelchair to change anything. Thinking about how difficult this adventure truly was, how dependent and broken I really felt, wondering if I would ever try something like this again. And as I felt a hot tear trickle down my cheek, I remembered Emily's words once again. Slow and steady wins the race. I wanted to run to London despite my new life and challenges and wanted to do this with people I only met a few short months before. I wasn't feeling upset because London or traveling was upsetting, I was upset because I expected too much too fast. At a time when I needed familiarity and protection, I forced myself into isolation and vulnerability. I thought checking an adventure off of the list would make me feel whole again. But, what really happened, what really left me feeling whole again, was knowing that when I felt the loneliest and most fearful, something good happened and that good was in the form of a friend, not a destination, a vacation, a thing, but the face of a friend. The fear of the unknown, particularly of new challenges never leaves, but the faith that good things do happen all on their own, when I need them most and I don't need to force them...I needed to know this and it happened.

A few weeks ago, I went to a bar with some friends. Bars are still difficult for me. For some reason I feel very awkward and obviously in a wheelchair when I am in a bar. The space is not plentiful, people constantly move around me and bump into me, I'm constantly apologizing and drawing attention. I basically see mostly crotches and belts and waists. Independence is not an option and because of this my frustration and feelings of defeat usually fester. I feel more than comfortable most places, so when I am confronted with this uneasiness again, I must resist feeling defeated and broken. I left the bar, yet again, feeling pathetic. Why is a bar so difficult? I wrestled and agonized for days. After a discussion with a fellow paraplegic friend experiencing similar issues, I learned I am not alone and bars are just something to overcome and I resigned myself to understanding maybe they will just always be difficult, but it doesn't mean I can't adjust and do my best to make them work. Around the same time I went to visit a very sick friend in the hospital. During the visit, my friend's nurse continued to return to the room to change her IV bag or give my friend a pill to swallow. I was sure I recognized the nurse, but assumed it was because of my frequent past visits to the hospital. As I was leaving, the nurse stopped me in the hall and asked if I was Sarah Berger. When she was a home nurse, eight years ago, she saw me at my old apartment and commented how sickly and close to death I was then. She more than complimented my current health and was astounded to learn about my tumultuous journey of achieving the newly found health I do have. She was a reminder of where I had been, how hard I had fought, the mountain I climbed. I met her at the beginning of my illness and back then she was impressed with my ability to fight, she didn't even see the years that followed, the nights filled with sweats and vomiting. My friend's suffering and illness combined with the nurse's elation and surprise to learn I was well, were enough to knock me out of any pathetic or self loathing feelings I was having about a stupid failed experience at a bar. Seeing my sweet, very sick friend and knowing I was not too long ago, the person in the bed, the one wondering my fate, gave me enough courage and strength to let go of the force and speed I am using to forge my dreams, and to once again, slow down and remember where I am going and where I have been. Slow and steady wins the race. I don't have to master each challenge with any sort of speed. This nurse didn't question the length of time it took me to get well, she asked about how I was able to heal, how I found the right doctor and while we talked I couldn't help but think back to myself at the time she was my nurse and how hopeless I felt, how alone and scared I felt. Floods of memories rushed back and I saw the moment I found my doctor because another doctor went out of town and how it all just worked out. And how this doctor is still my current doctor and can fix any problem I have and consistently checks and rechecks his diagnosis and orders. PICC lines and hospital visits are now a blur and regular life becomes what is important instead of fevers and antibiotics. How contentment and hope once again a part of my vocabulary. This encounter, this brush with the past, left me in tears. I cried heavily when I finally arrived at my car.

A few days later I had my weekly doctor visit with my regular, amazing doctor. He did his regular check and when he was finished, he shook my hand and said, "Nice work, keep it up, we are almost there, slow and steady." My jaw hit the floor and I tried to shake his hand back, but I have no idea what I did because the rest of the visit is hazy. I couldn't concentrate on anything other than his words, Emily's words, slow and steady. As soon as I fell and learned my fate, I couldn't wait to get back to my life. I couldn't wait to do everything I did before and do it just as I had done before. I didn't want to wait and relearn anything bit by bit. I wanted to do it all by myself and as quickly as possible. Each time an illness or issue was discovered, I wanted to solve it and heal it and move forward at warp speed. I wondered why bad coincidences were outweighing the good and realized they weren't, I just wasn't allowing the good to happen. I was forcing so much to happen and so fast, that bit by bit, I was literally falling apart. An illness, an injury, an abrupt life change takes time and patience. The physical healing and adjustments require so much diligent care and attention, the emotional damage is left to smolder. My mind, my spirit wanted to return to my old life, the person I knew and the plans I made. I had no idea my dreams could still be my dreams, I just had to adjust how I achieved them. Running and escaping and avoiding and trying to pretend my paralysis didn't exist, caused deep and excruciating physical and mental wounds. When I finally slowed down, when I finally paused long enough to make a plan, a steady plan, I started to see progress. I started to see all of the good that "suddenly happens". I started to look back and see love and friendship popping up all along when I needed them most, I started to see a pathway opening up to healing and how to grab a hold of it and not let go, and I started to finally understand what Emily was trying to tell me when she gave me that gold and green turtle and told me to remember the story of the Tortoise and the Hare. The race isn't towards a finish line or to another country, or to be the best paraplegic ever, it is the race with myself. The race of discovering what is truly important. But the goal, the prize of this race isn't a gold, silver, or bronze medal, it is the moral, if you will, the discovery that life, even though it is filled with the unexpected, the difficult and the oh so challenging and soul crushing, doubting moments it also bursts spontaneously with goodness and light and a hope that sustains through the toughest and longest of journeys. Our scars and damages become our war wounds and the magnificent moments and people peppered along the way become our medals. We just have to slow down and be willing to stick it out long enough to notice.

Monday, October 15, 2012

French Onion Soup

One of my favorite programs on NPR is the Splendid Table. The radio show features a variety of famous and not so famous chefs from around the world and the entire hour is spent discussing food and cooking. On a cold Sunday morning last October, I was listening to the show and Wolfgang Puck happened to be the guest chef of the day.  He had a mountain of information to share and allowed listeners to hear some of his secrets of cooking. At the end of every show the host asks the featured chef what his or her favorite go-to meal is...a recipe he or she cooks at the end of a long day and a recipe using items usually on hand. Much to my surprise, Wolfgang Puck quickly responded, "Oh that's easy, onion soup." I was shocked because I always assumed real onion soup would be quite difficult to create. He explained his reasoning, "All you need are simple, yellow onions, beef stock, white wine, and Cognac. Then you caramelize the onions to death, add the liquids and you have a beautiful soup." He emphasized the caramelizing, reassuring the audience the bottom of the pan should be black. Apparently, this intense caramelizing is the secret to perfect onion soup. Later that evening, I pulled out my Barefoot Contessa cookbook and found her recipe for onion soup, it was surprisingly similar to Wolfgang Puck's version. I halved Ina Garten's recipe, eliminated the veal stock and replaced it with beef stock, and ignored her direction to saute the onions until they turn a rich golden brown color. Instead, I caramelized the heck out of them, just as Wolfgang Puck suggested, and WOW did the soup turn out well. Another time, I didn't caramelize them as much and it was still good, it just didn't have the wow factor at all. A friend ate a leftover bowl of the Wolfgang Puck inspired batch and said it was the best onion soup he has ever tasted. I am not sure about that, but I am sure it is one of the best bowls I have ever tasted. Honestly, caramelize them until they are almost burned. You will be scared, but when the liquids deglaze the pan and all of the black bits combine into the soup, you will be ever so grateful, trust me. And this soup gets better as it sits. It is so easy for me now, I don't even have to open the book. I have a raging cold right now, I can hardly breathe and am coughing non-stop, but this soup always seems to hit the spot...I think it even helped my cold. Enjoy and good luck. Oh and it might seem as if this is a lot of alcohol to purchase, but once you make it the first time, you will want it again and again. I keep the bottles on hand and always seem to use them up during the fall and winter months.

Ina Garten's list of ingredients: (from The Barefoot Contessa Cookbook)
(serves 4-6  *I halve the recipe when I am making it for two people...I always have leftovers. When I serve a larger group I make the entire amount and there is plenty for at least six good sized bowls.)

2 1/2 pounds yellow onions, halved, and sliced 1/4 inch thick (8 cups) *about 4 large onions
1/4 pound unsalted butter
1 bay leaf
1/2 cup medium-dry sherry
1/2 cup brandy or Cognac (I used brandy)
1 1/2 cups good dry white wine
4 cups beef stock
4 cups veal stock (I use more beef stock, I am not a big fan of veal)
1 tablespoon kosher salt *must use KOSHER salt! It truly does make a difference!
1/2 teaspoon pepper

Freshly grated Parmesan and Gruyere
Also, add the Parmesan Croutons from the Tomato Soup Recipe if you like bread in your onion soup.

First, slice the onions. This is really the only major effort. It hardly takes any time either.

Then, put the onions, bay leaf, and butter in a large, heavy-bottomed pot.

Caramelize the onions until they are really brown. This is the part Wolfgang Puck said is so very important. This will take a good amount of time, 20 or 30 minutes. I always do dishes or start to prepare the Parmesan toasts and stir the onions every so often.

This is how dark the onions should be...see the black bottom?

A close up of the finished onions.

Once the onions are really, really caramelized, deglaze the pan with the sherry and brandy and simmer uncovered for 5 minutes. All of the black on the bottom will not come up this time. Some of it will, but do not be alarmed if most of it is still stuck. You should get a nice, dark soup base from this step.

This part looks really scary because of the black stuff, but I promise the darkness is the secret.

Add the white wine and simmer uncovered for 15 more minutes. When you add the wine, scrape even more of the bits from the bottom of the pan and the soup will get richer and darker. The darker the color, the better the soup.

Finally, add the beef stock (scrape the last of the black bits) plus salt (please remember to use kosher salt, my sister used table salt and it was way too salty) and pepper and bring to a boil. Then, simmer uncovered for 20 minutes. Remove the bay leaf, taste for salt and pepper, and serve hot with grated Parmesan and Gruyere cheese. Add the Parmesan toasts if you prefer. When you add the beef stock, it will turn a perfect onion soup brown and you will know you did everything right.

If you caramelized the onions enough, the soup will be this dark in color after you add the beef stock.

Finished product...notice the color of the soup. It tastes every bit as good as it looks, wait until you try it.

I hope you enjoy it as much as I do...I have already made it three times this season.

I am off to bed to rest this snotty head. Have a wonderful evening...or what is left of it.

Saturday, October 13, 2012

The Missing Wallet

Sometimes not feeling my legs provides serious comic relief. I will look for hours for my keys, only later to discover they fell in between my legs and I simply didn't feel them. Or I will get all the way to my car and realize I forgot to put on my shoes. These discoveries always leave me laughing, never upset. I guess I could get frustrated and overwhelmed, but usually what happens is so hysterical it outweighs any sadness that may cross my mind. Mostly, the mistakes are small like missing keys or shoes, but sometimes not feeling my legs causes huge, frantic mixups, leaving me in a fit of hysterical laughter. Like the other day on a regular trip to Biggs. I go to a few grocery stores because of the way I eat. I work out a system for each store based on what type of carts are available, how high the shelves are, the distance to the parking lot, etc. I go to Biggs to stock up on sparkling water. I am addicted to fizzy water...just the plain, no flavors. I was a long time devoted addict of Diet Coke and one day, after reading an article about the toxins in Diet Coke, I decided to give it up cold turkey. I bought a bunch of sparking water and reached for one every time I wanted a Diet Coke. I quickly realized I was on addicted to carbonation, not the Diet Coke flavor. Biggs usually offers the best deal on the water I buy, so I shop at Biggs about once a month to stock up on water and any household items like dish soap or laundry detergent. So, I pulled up in the spot I prefer, not right in front of the store, but down a little bit. There is too much traffic right in front of the store to put together my chair, so I always park down a bit. This particular day, I put together my chair, grabbed my keys and my wallet, putting them both in my lap and headed into the store. I selected a large, standard size cart because that is all they offer. Some stores offer smaller, mini carts, which are a dream and a whiz to wheel around. I don't usually bring a purse or bag because that is just one more thing to carry. My wallet and keys usually sit very nicely on my lap and I don't have to worry about them. For some reason, I was in a hurry this day and wasn't paying as much attention as I usually do. I zipped through the aisles, collecting the few staple items on my list and headed straight for the sparking waters. I push the cart with one hand and wheel with the other and constantly look down at my lap to confirm that my keys and wallet are still resting comfortably. But, then I became distracted. I started worrying about my dog sitting in the car and fretting about being late for some activity or other. So I started whizzing around, making large, sweeping turns on the freshly waxed floors...I was feeling pretty fancy and like I had it all together. I lifted six twelve packs of water into my cart and pushed the now heavy metal basket on wheels to the checkout line. I unloaded everything and waited for the cashier to scan my items. As she was scanning, I decided to get out my wallet and credit card so I would be prepared to pay. But, I looked at my lap and a sinking, blood rushing feeling came over me. No wallet, only my keys. I looked all over my lap, in between my legs and to the side of my legs, making sure it wasn't lodged somewhere. My face turned white and my mouth became as dry as sandpaper. I very nervously said to the cashier, "I lost my wallet." I was panicking, but trying so hard not to show it. The sweet cashier said she would finish ringing up my stuff and put the order on hold until I could figure out what happened to my wallet. I immediately began frantically wheeling around looking for it. I retraced my entire shopping trip, going up and down the aisles and looking thoroughly through the shelves. I still could not find it. I knew I had it because I remembered putting it in my lap and I had my list in my hand, which I always keep in my wallet. So it had to be in Biggs somewhere. I started getting very nervous and very upset, allowing my head and thoughts to venture into the worst scenarios I dropped it and someone picked it up and stole it and ran off with it and now I was going to have to renew my license, cancel my credit card, and oh all of that missing cash and my cute Kate Spade wallet. I kept in my emotions, but continued to wheel around Biggs as if I was a contestant on Super Market Sweep. Several employees were now assisting me and an announcement was made over the loud speaker...everyone was looking for my black, Kate Spade wallet and not finding anything, not even a trace of the wallet or anything inside of it. I was beginning to become a royal mess, but then I decided to go look by the sparking water one more time. I have to lift the water, so I only assumed while lifting I knocked it off and it was maybe tucked between two waters on the shelf. I took off by myself because I didn't want anyone to see the hot tears starting to well up in my eyes. I knew on the grand scale of what has happened to me in my life, this was nothing, just a scratch that could be easily repaired, but I was allowing my emotions to get the better of me and I was embarrassed. As I was wheeling towards the waters, I hit a small bump and lurched forward and had to brace myself on the lower bars of my wheelchair. As I did this, my head flew forward, catching a glimpse of my lower legs and feet and shoes. When I looked down at my light grey running shoes, I saw it, a large, black wallet staring up at me, almost grinning. There it was, just resting on my shoes this entire time. And then I reacted in such a goofy way, I still can't believe what I did. I grabbed the wallet, while still bending over and quickly and very lightly I tossed it under one of the shelves, exclaiming, "Oh there it is, I found it!" My cover up happened just as the other volunteers, searching for the wallet, rounded the corner. Someone picked it up and handed it to me and I gave an Oscar worthy performance of shock and surprise. Inside I was relieved and giggling and it was all I could do to pay for my groceries and get out to the car without falling into a fit of hysterical laughter. And I did fall into that fit of laughter, the entire way home, the next day, I am still laughing. Not having the use of my legs is a cross I would prefer not to bear most of the time, but it is days like these, moments like this, well it makes it all go away and it becomes just a funny part of my life. And I also know where to look now when I can't find my wallet. My legs may not be good for walking anymore, but my feet sure know how to hold onto a wallet and for that I am forever grateful.

P.S. I can't thank you enough for all of your kind and thoughtful comments. Your encouragement is priceless and your words invaulable. I learn so much from you all. What a loving and giving world this is. I will stop back by tomorrow night with a French Onion soup recipe that will knock your socks off and put them right into the dryer. (Paula Deen once said this about her Not Yo' Mama's Banana Pudding). The soup recipe is courtesy of Ina Garten with a little bit of Wolfgang Puck via the Splendid Table. I have yet to have better onion soup. I hope you all will enjoy it just as much. 

Have a Happy Happy Weekend,

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,

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 will become easier than ever. You will know your spirit and that it is not disabled, it never was.

Much love,

Monday, October 1, 2012

A Different Perspective

As many of you know I constantly struggle with idea of having children. I believe more and more it is truly possible and something I can handle. And to assure me even more, sometimes a moment occurs to remind me just how possible my dreams really are. Today, as I was cleaning out my closet - an enormous project going on for weeks and weeks - I came across some photos and started peeking through the stack. Much to my surprise, I stumbled upon a couple of pictures taken just a little over 4 months after my accident. I completely forgot about these pictures and this moment. I was at a dance competition, holding a dance mom's baby and I was holding him just fine. I hardly had any balance at this point and was still healing, but I did it and didn't even realize it until today.

After looking through the pictures I remembered another memory that always brings a smile to my face. A few years ago, I traveled with a friend and her daughters to a dance competition in Michigan. The morning of the dance competition I was, of course, running late. Eileen and two of her girls already headed over to the venue where the competition was underway and I was following close behind with the other one. Since we were in a hurry, I didn't dry my hair, which was as long as it is now, and I let it stay wet and wavy, hoping the wind would dry it out. It was very bright outside, so I put on my sunglasses and we headed to the competition. We were moving very fast as we hustled a few blocks to our destination. The wind was fierce and to say my hair was windblown would be an understatement. Quickly, we threw open the doors and sped in, hoping not to miss Kelly dance. Propelling myself in my wheelchair requires both hands, so I don't always remove my sunglasses, coats, hats, or gloves until I am settled. We raced into the auditorium and spotted Eileen and the girls. As we hurriedly headed their way, a little blond girl, who was all of about five years old, came running towards me. Her little feet were running so fast she stuck out her hand and braced herself on my knee. Then with her cottony blond hair and tiny face, she looked at me with a dimple forming grin and sparkling eyes and said in a voice, filled with excitement and wonder that only a five year old can create, "Are you a movie star?"
I laughed, put my arm around her and said, "No, honey, no I am not." She asked me about fifty more questions, not one of them pertaining to my wheelchair or paralysis, and took off when her mom called, running backwards and shouting, "Bye, I have to go dance now."
When I am feeling really down about something silly or start to feel self conscious or nervous about the way I look in my wheelchair or when I too quickly judge someone or something else, I think of this little girl and her question. I think of her perspective and how simple and kind it is. And how unaware of difference, disability, and prejudice she is and I try to view life through her lens. The lens that assumes because you are wearing sunglasses and have windblown, wavy hair you must be a movie star. Because we are all movie stars and rock stars...just grab a fan and some sunglasses, you'll see.