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 friends...it 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 luxury...trust 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.