Friday, March 29, 2013
Normal
"Wouldn't take nothing for my journey now." -Maya Angelou
I am reminded by my therapists on a fairly regular basis that I missed out on a decade of 'normal development'. While I was experiencing my years of illness and recovery, others my age were experiencing 'normal' life events. I know and understand the intention and thought behind this statement. It is meant to alleviate the stress I feel when I express worry over my life as it stands now. I sometimes feel behind or out of place or different from all of my peers. I feel like I've been in a dark abyss while everyone else moves gleefully along. But, while I know these feelings come and must be addressed, I also do not believe I am really and truly all that different from everyone else.
I believe each of has a journey, a life experience worthy of admiration and respect. And if I compare myself to the small group fluttering around me, I might feel a bit excluded or behind, though ridiculously untrue. Each of us has something to offer and no one has it easy. When these feelings creep in, I look at the bigger picture, the larger world and I see my path and my life is just that, my path and my life. I am sure all over this world there are other twenty somethings with far greater struggles and superior levels of achievement I can't even begin to fathom. I know there is suffering and marginalizing I can only read about and will never experience, simply because I am lucky enough to be born in my country. I can't begin to compare myself, nor should I.
Life is not about comparison or competition. It is not about meeting a check list of experiences by a certain age. Life is about individual experience and finding the commonalities that lie in individual purpose. While each of us has a unique gift to offer, a unique journey to forge, we all have a purpose to offer the world. And that purpose is found through and with the help of our singular path. What we contribute to the greater good or the common good are the lessons we have learned along the way. This is our common charge, our common purpose. And without our difference or diversity, our world lacks beauty and strength.
Instead of loathing my separateness, I choose to acknowledge my experience as a gift for understanding. I choose to be grateful for all of the events in my life, even if they are not found on a 'normal' check list. The word normal is dangerous. It decides that one is better or more common or more acceptable than another. I believe every life is precious and purpose filled, whatever the path. Just getting up to face the day is a struggle and a profound achievement for some and should be honored with the same dignity a diplomat or any other grandiose position in life is honored. I am 'normal' because I have life experience, a personal journey, suffering, joy, and struggle. None of these things brought me to a place of comparison or competition. They led me to a place of compassion, love, and humility. And if that isn't normal, than I prefer to be anything but.
Thursday, March 21, 2013
My Reflection
On one of my regular walks with my dog, Belle, we always pass a small section of local shops. One is a pilates studio, one a clothing studio, and one a stationary store. I occasionally look up to see the window displays, but very quickly put my head down. I need to pay attention to the uneven sidewalks, debris, and any cracks in the pavement. The slightest bump can suddenly halt my chair and jolt by body forward, sometimes causing my chair to tip and even better, cause me to fall out of my chair. But, the other day I noticed another reason why I put my head down so immediately. The pilates studio has very clear and plain windows that are almost mirror like. I actually don't look in mirrors very often. Very soon after my accident, I realized it upset me in a way that made me very uncomfortable. It forces me to see myself as a paraplegic or disabled person. I constantly shift around in my chair trying to make the refection better, even pushing myself up to see what I look like standing again. I notice all of the results of my injury, the skinny legs, swollen ankles and feet, the protruding hips, and only want to look away and change the thoughts rapidly running through my head.
On my walk, I can see myself everyday in the reflection of the pilates studio window. See, I even call our outing a "walk." In my head, I am not paralyzed. I simply don't picture myself this way. I feel as whole as the morning before my accident. My brain knows I am paralyzed. I know the physical differences blaring in my life, but somehow my spirit, the core of who I am, has not received this message. I dash out of the basement door in the morning and feel the warm blood pumping through my arms with every push of my wheels, much like feet hitting the pavement. It is fluid and normal to me. I pause to let Belle sniff, check for bags in my pockets, and really don't think about my body in the wheelchair. Yes, I accommodate a new way of life and have new ways of doing things, but I still feel like myself most of the time. And then we pass the pilates studio and I see it. I see the reflection. I can see my shriveled legs locked in my wheelchair and my upper body doing all of the work. I see my giant wheels and the chair itself. For some reason, it is always catches me off guard. It makes me think, "oh yeah, you are paralyzed, Sarah." I know this seems funny to write because I spend so much time caring for my body and all of the issues that accompany such a lifestyle, but the visual of it is far more alarming than I am ever prepared to see. I don't think about all of the extra equipment attached to my body until I bump into a door or have to squeeze onto an elevator. After I saw my reflection in that window, I started shedding tears behind my sunglasses. I really wasn't sure why and I tried to hold them back for a block or so, but then I just let go and let them flow. Over the years, I have learned that crying is courageous. It is an admission of sadness and pain and it takes bravery to allow myself to admit these feelings. So I cried the entire walk and all the way back home. Upon our return home, I wheeled back to my room, where the only mirror I can see myself in is located, and stared at myself. And while I know the physical does not matter, I still tried to force acceptance. And then I discovered something. This is just my body. This reflection is the vessel I reside in and not who I am. And yes, it is broken and mangled and difficult to accept, but it is not who I am. I care for my physical form, respect, and honor it because I need it, but it does not limit me. Who I am inside, the person in my head, my spirit, these things are not scarred and bruised and swollen and shattered. In fact, they are for more complete and strong and brave than long ago when the outside wasn't so ravaged. I decided it is okay to be shocked by the outside because it proves how healed and whole my inside truly is and continues to be everyday. I manage to live with my injury, but it does not have to define my spirit and my will. My legs may not work, but my wings are fully intact and I will continue to fly.
On my walk, I can see myself everyday in the reflection of the pilates studio window. See, I even call our outing a "walk." In my head, I am not paralyzed. I simply don't picture myself this way. I feel as whole as the morning before my accident. My brain knows I am paralyzed. I know the physical differences blaring in my life, but somehow my spirit, the core of who I am, has not received this message. I dash out of the basement door in the morning and feel the warm blood pumping through my arms with every push of my wheels, much like feet hitting the pavement. It is fluid and normal to me. I pause to let Belle sniff, check for bags in my pockets, and really don't think about my body in the wheelchair. Yes, I accommodate a new way of life and have new ways of doing things, but I still feel like myself most of the time. And then we pass the pilates studio and I see it. I see the reflection. I can see my shriveled legs locked in my wheelchair and my upper body doing all of the work. I see my giant wheels and the chair itself. For some reason, it is always catches me off guard. It makes me think, "oh yeah, you are paralyzed, Sarah." I know this seems funny to write because I spend so much time caring for my body and all of the issues that accompany such a lifestyle, but the visual of it is far more alarming than I am ever prepared to see. I don't think about all of the extra equipment attached to my body until I bump into a door or have to squeeze onto an elevator. After I saw my reflection in that window, I started shedding tears behind my sunglasses. I really wasn't sure why and I tried to hold them back for a block or so, but then I just let go and let them flow. Over the years, I have learned that crying is courageous. It is an admission of sadness and pain and it takes bravery to allow myself to admit these feelings. So I cried the entire walk and all the way back home. Upon our return home, I wheeled back to my room, where the only mirror I can see myself in is located, and stared at myself. And while I know the physical does not matter, I still tried to force acceptance. And then I discovered something. This is just my body. This reflection is the vessel I reside in and not who I am. And yes, it is broken and mangled and difficult to accept, but it is not who I am. I care for my physical form, respect, and honor it because I need it, but it does not limit me. Who I am inside, the person in my head, my spirit, these things are not scarred and bruised and swollen and shattered. In fact, they are for more complete and strong and brave than long ago when the outside wasn't so ravaged. I decided it is okay to be shocked by the outside because it proves how healed and whole my inside truly is and continues to be everyday. I manage to live with my injury, but it does not have to define my spirit and my will. My legs may not work, but my wings are fully intact and I will continue to fly.
Tuesday, March 12, 2013
Favorite Conversations
This past week I've had two notable conversations with two different people. One of the conversations left me speechless and the other conversation encouraged optimism and hope. I always say one of the benefits of my condition is the ability to see humanity at its best. Many people stop me when I am walking my dog to tell me how great it is to see me out and about and how much I encourage them just simply walking my dog. Runners clap and cheer for me as they pass by and always share a few kind words. So much so, last summer I was down at the river, walking Belle, and I noticed an unusual amount of people cheering and yelling. They were saying things like, "Way to go, keep it up, you are almost finished!" I thought maybe it was a nice day and everyone was just really happy. I was so confused until I saw cones, signs with mile markers, and a finish line in the distance. I was apparently dead last in a race.
However, I also have conversations that boggle my mind and leave me chuckling. I rarely, if ever, feel angry or judged. A lot of people say a lot of silly comments, not harmful silly, just funny silly. I lead with kindness, rather than trying to prove something or correct them, but sometimes I can hardly speak for fear of bursting into nose-snorting laughter. My medical services company, a company I've worked with for twelve and a half years now, called this past week. I am in regular contact with this company because I order supplies or ask them to set up services I might need. They are hired by my insurance company to provide such services. A representative, with a nursing degree, called and stated she needed to ask me a few questions. I obliged. She asked about the performance of my cleaning service, if I recieved my supplies in a timely manner, and then she asked me a question I could not believe I was hearing. She asked, "And one last thing, are you still using your wheelchair?" I paused and said, as kindly as possible, "Yes, yes I am. I am paralyzed." Then she asked, "Well do you know how long you will be using your wheelchair?" This time I really paused because I honestly didn't know how to respond. I laughed and replied, "Well, I am paralyzed from the waist down which means I can't walk or feel my legs at all. So, until there is some sort of miracle cure, I will be using a wheelchair for the duration of my life." And then she said this, "Oh, well okay, please let us know when you don't need one anymore." I could only say, through giggles, "Sure thing, I'll call you right away." I did not stop laughing for days. Every time I recounted the story, I laughed even harder. I told my doctor and he was left speechless as well. I guess she knows something about paralysis I don't know. I guess I should also appreciate her optimism.
I also have conversations that teach me lessons. Like the conversations I regularly have with my friend Ashlea's four year old daughter. Every time I see her daughter, Kate, she asks about my legs. She wants to know why I can't find a doctor to fix them and asks if I am very, very sure I looked everywhere for a good doctor. I never, ever mind these questions and always try to explain to her that it isn't the doctor's fault, they are just broken and don't work. She usually asks, I answer, and then she is on to the next thing which is usually discussing favorite princesses, favorite colors, and climbing up my wheelchair to sit in my lap. She usually only mentions it once, still asks me to get her drinks and carry things and completely accepts me as I am. A few days ago, she asked again. This time she questioned, "Are you sure, are you really, really sure your legs are broken forever?" I said, "Yes, I'm very sure they are broken for a long, long time." Then she quietly said, "I just want you to be able to go up and down stairs." While trying to hide my tears, I replied, "I do too, Kate, I do too." Later, I used the restroom and told her I would be right back. She asked, "Hey, how are you going to get out of your chair to go to the bathroom?" I told her I would just use my arms and then demonstrated how I lift myself. She thought for a minute and with as much authority as a four year old can muster she said, "Well, you need to be careful, I don't want you to hurt your legs any more just in case we find a doctor to fix them!" I told her not to worry and promised to be careful.
Kate reminds me every time I see her and hear her innocently hopeful and optimistic questions not to let go of hope and determination. She has no idea how much she teaches me and reminds me of such powerful lessons. She never gives up and honestly believes one day I will walk upstairs with her and play with her dollhouse. I need her questions, her spirit, and her innocence. They come in handy on the days when I am running low on optimism. The world is simple to her, doctors fix what is broken and prayers are answered.
However, I also have conversations that boggle my mind and leave me chuckling. I rarely, if ever, feel angry or judged. A lot of people say a lot of silly comments, not harmful silly, just funny silly. I lead with kindness, rather than trying to prove something or correct them, but sometimes I can hardly speak for fear of bursting into nose-snorting laughter. My medical services company, a company I've worked with for twelve and a half years now, called this past week. I am in regular contact with this company because I order supplies or ask them to set up services I might need. They are hired by my insurance company to provide such services. A representative, with a nursing degree, called and stated she needed to ask me a few questions. I obliged. She asked about the performance of my cleaning service, if I recieved my supplies in a timely manner, and then she asked me a question I could not believe I was hearing. She asked, "And one last thing, are you still using your wheelchair?" I paused and said, as kindly as possible, "Yes, yes I am. I am paralyzed." Then she asked, "Well do you know how long you will be using your wheelchair?" This time I really paused because I honestly didn't know how to respond. I laughed and replied, "Well, I am paralyzed from the waist down which means I can't walk or feel my legs at all. So, until there is some sort of miracle cure, I will be using a wheelchair for the duration of my life." And then she said this, "Oh, well okay, please let us know when you don't need one anymore." I could only say, through giggles, "Sure thing, I'll call you right away." I did not stop laughing for days. Every time I recounted the story, I laughed even harder. I told my doctor and he was left speechless as well. I guess she knows something about paralysis I don't know. I guess I should also appreciate her optimism.
I also have conversations that teach me lessons. Like the conversations I regularly have with my friend Ashlea's four year old daughter. Every time I see her daughter, Kate, she asks about my legs. She wants to know why I can't find a doctor to fix them and asks if I am very, very sure I looked everywhere for a good doctor. I never, ever mind these questions and always try to explain to her that it isn't the doctor's fault, they are just broken and don't work. She usually asks, I answer, and then she is on to the next thing which is usually discussing favorite princesses, favorite colors, and climbing up my wheelchair to sit in my lap. She usually only mentions it once, still asks me to get her drinks and carry things and completely accepts me as I am. A few days ago, she asked again. This time she questioned, "Are you sure, are you really, really sure your legs are broken forever?" I said, "Yes, I'm very sure they are broken for a long, long time." Then she quietly said, "I just want you to be able to go up and down stairs." While trying to hide my tears, I replied, "I do too, Kate, I do too." Later, I used the restroom and told her I would be right back. She asked, "Hey, how are you going to get out of your chair to go to the bathroom?" I told her I would just use my arms and then demonstrated how I lift myself. She thought for a minute and with as much authority as a four year old can muster she said, "Well, you need to be careful, I don't want you to hurt your legs any more just in case we find a doctor to fix them!" I told her not to worry and promised to be careful.
Kate reminds me every time I see her and hear her innocently hopeful and optimistic questions not to let go of hope and determination. She has no idea how much she teaches me and reminds me of such powerful lessons. She never gives up and honestly believes one day I will walk upstairs with her and play with her dollhouse. I need her questions, her spirit, and her innocence. They come in handy on the days when I am running low on optimism. The world is simple to her, doctors fix what is broken and prayers are answered.
Monday, March 4, 2013
Silver Linings
Recently, I saw the film Silver Linings Playbook. Do not worry, this post will not be filled with spoilers or a synopsis of the film or even discussion of parts of it, other than the gratuitous mention of the hotness that is Bradley Cooper. That was the mention, I will not discuss him or the character he plays in the movie anymore, though I could easily go on about his blue eyes and scruffy beard...
I am also currently reading, Man's Search For Meaning by Viktor Frankl, published in 1959. Frankl, one of the twentieth century's great psychiatrists, survived the Nazi concentration camps at Auschwitz, Dachau, and Turkheim. He writes about his experience, as well as the experience of his fellow survivors, and the common thread that helped them survive the brutal, dehumanizing environment: they all held on strongly to a reason to live, a meaning to their lives more significant than their own immediate pain. Though completely unrelated in plot, the movie and this book both guide my thinking in the same direction. Suffering is not something to hide, not something degrading, but rather ennobling.
Through my own experience of suffering, I learned to ignore the attempts of others to explain away my suffering. I do not discount the well intentions behind these explanations, but find them to be useless and aggravating. I firmly reject there is a reason for my suffering or a master plan at work. Because, for me, in order to believe this, then I must believe there was and is the option to find the cause of it and stop it. And to believe I do not deserve or am not chosen to receive this cessation or relief, makes the suffering masochistic, rather than a normal, albeit difficult to accept, part of the human condition. I believe everyone suffers at some point. Some much greater than others, but the feeling of suffering does not have a hierarchy. It just happens without explanation or reason. I feel this is hard to accept because as a human, I too, feel the need to control or to have power to manipulate or predict my fate. I do not have this power and have given up the search for the reasons why bad things happen. To me, this search is useless and futile.
However, I do find the search for the meaning of life to be of great value. When I was first paralyzed I allowed my broken back to break me. I attempted to hide my suffering, to be successful in spite of my pain. I thought of it as a scar on my life, rather than a medal of honor. I trudged on secretly carrying the weight of my burdens and pretending I was happy. I listened as I heard I was a lesson for people, there was a reason behind my suffering, something greater at work. And listening to this only made me more angry and more resentful. Why weren't those around me lessons or greater plans at work? Why did I have to be this example? Why wasn't my life, my choice as important as the next persons? Why was my life dictated for me? It took me a long time to discover my accident was just that, an accident. I didn't have a choice as to whether or not it happened. It was not a lesson for others or a lesson I needed or deserved to learn. And my choices were and are important and I do have them. My choice, as far as my suffering, is how I respond to it. And though I do not believe disabled people are here to teach lessons for others, our lives are our own lives to live, I do believe my disability enhanced my ability to help others and find the meaning of my own life. I also believe I would have eventually discovered this without my paralysis.
Finding the silver linings in situations, finding meaning to my life other than my own vanity and desires, is the great epic of life. I take my suffering, which is forever a part of me, and learn to live with it and honor it. I learn to forgive, to accept, and to love. I learn it is far better to be kind than to be right. I learn to look for the good, rather than the bad, but also to love the bad as part of the good. I learn to love the entire person, including myself. I can not explain away or justify suffering, it just is. Therefore, my pain is not the meaning of my life, nor is it my purpose in life. Rather, my response to it, and all other uncontrollable events in my life, is where I find meaning and purpose. Instead of trying to stop the pain or cast it aside and pretend it doesn't happen, I can decide to transcend the hurt. I make the best of my situation and, at the same time, discover the true meaning of my life which is to triumph over my anger, frustration, resentment, suffering, and hatred using empathy, compassion, forgiveness, and love. This triumph is my true silver lining, the meaning of my life, my master plan.
And as Viktor Frankl so clearly states, "...there are three main avenues on which one arrives at meaning in life. The first is by creating a work or by doing a deed. The second is by experiencing something or encountering someone; in other words, meaning can be found not only in work but also in love...Most important, however, is the third avenue to meaning in life: even the helpless victim of a hopeless situation, facing a fate he cannot change, may rise above himself, may grow beyond himself, and by so doing change himself. He may turn a personal tragedy into a triumph."
I am also currently reading, Man's Search For Meaning by Viktor Frankl, published in 1959. Frankl, one of the twentieth century's great psychiatrists, survived the Nazi concentration camps at Auschwitz, Dachau, and Turkheim. He writes about his experience, as well as the experience of his fellow survivors, and the common thread that helped them survive the brutal, dehumanizing environment: they all held on strongly to a reason to live, a meaning to their lives more significant than their own immediate pain. Though completely unrelated in plot, the movie and this book both guide my thinking in the same direction. Suffering is not something to hide, not something degrading, but rather ennobling.
Through my own experience of suffering, I learned to ignore the attempts of others to explain away my suffering. I do not discount the well intentions behind these explanations, but find them to be useless and aggravating. I firmly reject there is a reason for my suffering or a master plan at work. Because, for me, in order to believe this, then I must believe there was and is the option to find the cause of it and stop it. And to believe I do not deserve or am not chosen to receive this cessation or relief, makes the suffering masochistic, rather than a normal, albeit difficult to accept, part of the human condition. I believe everyone suffers at some point. Some much greater than others, but the feeling of suffering does not have a hierarchy. It just happens without explanation or reason. I feel this is hard to accept because as a human, I too, feel the need to control or to have power to manipulate or predict my fate. I do not have this power and have given up the search for the reasons why bad things happen. To me, this search is useless and futile.
However, I do find the search for the meaning of life to be of great value. When I was first paralyzed I allowed my broken back to break me. I attempted to hide my suffering, to be successful in spite of my pain. I thought of it as a scar on my life, rather than a medal of honor. I trudged on secretly carrying the weight of my burdens and pretending I was happy. I listened as I heard I was a lesson for people, there was a reason behind my suffering, something greater at work. And listening to this only made me more angry and more resentful. Why weren't those around me lessons or greater plans at work? Why did I have to be this example? Why wasn't my life, my choice as important as the next persons? Why was my life dictated for me? It took me a long time to discover my accident was just that, an accident. I didn't have a choice as to whether or not it happened. It was not a lesson for others or a lesson I needed or deserved to learn. And my choices were and are important and I do have them. My choice, as far as my suffering, is how I respond to it. And though I do not believe disabled people are here to teach lessons for others, our lives are our own lives to live, I do believe my disability enhanced my ability to help others and find the meaning of my own life. I also believe I would have eventually discovered this without my paralysis.
Finding the silver linings in situations, finding meaning to my life other than my own vanity and desires, is the great epic of life. I take my suffering, which is forever a part of me, and learn to live with it and honor it. I learn to forgive, to accept, and to love. I learn it is far better to be kind than to be right. I learn to look for the good, rather than the bad, but also to love the bad as part of the good. I learn to love the entire person, including myself. I can not explain away or justify suffering, it just is. Therefore, my pain is not the meaning of my life, nor is it my purpose in life. Rather, my response to it, and all other uncontrollable events in my life, is where I find meaning and purpose. Instead of trying to stop the pain or cast it aside and pretend it doesn't happen, I can decide to transcend the hurt. I make the best of my situation and, at the same time, discover the true meaning of my life which is to triumph over my anger, frustration, resentment, suffering, and hatred using empathy, compassion, forgiveness, and love. This triumph is my true silver lining, the meaning of my life, my master plan.
And as Viktor Frankl so clearly states, "...there are three main avenues on which one arrives at meaning in life. The first is by creating a work or by doing a deed. The second is by experiencing something or encountering someone; in other words, meaning can be found not only in work but also in love...Most important, however, is the third avenue to meaning in life: even the helpless victim of a hopeless situation, facing a fate he cannot change, may rise above himself, may grow beyond himself, and by so doing change himself. He may turn a personal tragedy into a triumph."
Wednesday, February 27, 2013
My "Instant Happy" Happiness Tool
“Much of the pain in life
comes from having a plan
that you’ve fallen in love with,
but that doesn’t work out.
Having to find a new
life plan hurts.
The trick is not to become
too attached to any particular
life plan and to remember
that there is always a better,
even-happier
life plan out there somewhere.
-Instant Happy
Karen Salmansohn
As a young girl, I fantasized about my life as an adult. I imagined my job, my family, and all of the choices I could make without my parents’ or teachers’ approval. I desired a second grade teaching position, four kids, a husband who looked like Luke Perry from Beverly Hills 90210, two cute little dogs, all of the shoes I wanted, and the freedom to do anything and everything I chose. I set up a classroom, in the basement of my childhood home, and gathered all of the neighborhood kids to act as my students. I taught them lessons while I circled the room with a ‘teacher’s copy’ book cradled in my arms and swirled chalk in my hand, just as my second grade teacher, Mrs. Argus, did. I chose all of the names for my future children by the age of ten, decided how many boys and how many girls and hung posters of Luke Perry everywhere, hoping I might bump into him one day. I knew exactly what I planned to do with my life.
My plans were brutally interrupted. At the age of twenty-one, I woke up one morning walking and went to bed that evening paralyzed from the waist down. A new reality was thrust upon me and my plan, my version of choice and freedom I yearned for as a child, was no longer applicable. For quite some time, following my injury, I desperately clung to this vision of freedom I had so carefully defined, as a child and young adult, that involved only my desires and neglected my body and my soul. I grew angry and resentful of those who seemed to choose freely and without consequence.
My health declined so rapidly and so greatly, I finally surrendered. Kindness to my body and its needs was imperative. The courage and faith to finally submit to the demands of my health were not found easily. I, reluctantly, tapped into a great deal of self discipline and routine. I began with simple choices, such as food and activity, choosing only what benefited my health the most. And as this practice blossomed, I added prayer, meditation, exercise, and anything that encouraged my physical and mental wellness. I soon discovered my value system was confronted because of my health situation. I adopted a new plan for my life. A plan that involved a level of undiscovered conciseness. A level I knew of, but never explored at any depth. I released the power of choice over to a higher power, instead of my own desires. This discipline opened my eyes to an alternative life plan, one guided by awareness, kindness, intention, and mindfulness. Though not always easy, instead of falling victim to judgement, desire, resentment, or envy, I now calmly surrender to love and servitude and purpose. This new found freedom is true freedom and offers a level of contentment I never knew existed.
Monday, February 18, 2013
Smile
Moments with friends in the hospital following an injury.
The first time out of the hospital...I was given a special pass to attend a party with a special friend.
Or days after I was finally released from the hospital and went to a concert with the dancing girls.
I returned to camp for the first time and saw the pure gentleness and heart of an animal who refused to leave my side.
And during the same return visit, my friend Neely attached flashlights (see pic above), with duct tape, to my wheelchair so we could see while she pushed me across the rugged terrain under the blanket of darkness only camp provides. And I remember how she sat in my other wheelchair, as we hung out with everyone, so I wouldn't feel alone.
Dashing to New York City to see a dear friend after 9/11.
The look of freedom after purchasing a car with hand controls. That smile isn't about the car, it's about the freedom. To go where and when I wanted after relying on the kindness of others for so long...priceless.
And my dad doing what ever he could to give me the freedom.
Taking off to see a dear friend play soccer for the first time, all by myself.
Attending a Christmas tradition I thought would only be a memory.
And cuddling with the cutest Sprite there ever was at said Christmas tradition.
Making gingerbread houses and gingerbread men with my roommate and friend.
Christmas moments with cousins and family.
And although I can see the illness taking its toll in this picture, I also see a smile and remember all of the laughter of this beautiful day. This was just a few short days after a blood transfusion.
A day at the park even though I wanted to stay in bed.
Tennis with Ashlea. Love.
Volunteering and helping with my church youth group. Fevers dominated these days, but moments with these kids took away the pain...if only for a fleeting second.
And this day. I decided to take a friend's daughter to the Bengals' training camp and the coach and quarterback noticed us struggling to find an accessible seat. The coach waved for us to come down and sit on the field and every player signed our footballs, jerseys, and hats.
And one of the greatest football seasons for the Bengals and we had season tickets. I soon discovered the perks of having a wheelchair...great seats at football games.
Some of these are hard to look at and notice my illness taking over, but then I remember it didn't win. It didn't even win when it was at its worst. I kept going and doing and living and believing. Life goes on.
And the hardest memory of all...with my dancing girls, still standing, and loving every minute of it. See if you can find me.
Just a story in images today. I will be stopping back by later in the week with many more words, but these pictures say enough. Remember to smile today...whatever the pain or however strong. It helps, I promise.
Sunday, February 10, 2013
Hope for Michael, Sweet Hope
There is a pervasive and constant fear that accompanies paralysis. Of all of the warnings and instructions doctors and therapists give, they neglect to share how overpowering this daily fear becomes. I struggle, daily, not to focus on the fear and try to put it in the back of my mind, but much like quick sand, it sucks me in without warning.
There are small fears, like the ever present worry of a fall outside without a cell phone or flinging my chair too far when I flip it over while I'm sitting in my car and putting it together. The fear of dropping hot food or spilling boiling water on my lap. And there are large looming fears like the shock of autonomic dysreflexia, which is a reaction to the autonomic (involuntary) nervous system to over stimulation, resulting in severe hypertension or high blood pressure. It is a fatal condition and can occur without much warning at all and happens because of very simple reasons. Simply waiting too long to use the restroom is an example of a stimuli of autonomic dysreflexia. And if it is not quickly treated or noticed, this reaction is fatal. Wounds anywhere below my line of injury can quickly form, in about ten minutes, because of clothing that is too tight or because I sit too long on a hard surface without a proper cushion. Even a regular couch can cause a wound if I am not diligent and remember to switch positions, relieveing pressure on specific points of my body. And when wounds develop, the risk of infection is enormous. Any type of infection, at any time, can sneak in and reek havoc on my body. Preventing infection, especially urinary tract infections, and pressure relief become a part of daily life. And after I finally talk myself out of these fears, I am left with the numerous fears that come with normal, everyday life. Fears I am sure everyone shares, but mine seem to be on a much larger scale. My security is always a risk, both financially and personally. I'm constantly anxious I will run out of money and be too sick to work or worry I can't run from someone who tries to attack me.
And then there are the emotional troubles and fears. I fear someone will never love me or posses the ability to handle such a life on a day to day basis. I trouble myself with others' perceptions of my reality and how they view my struggles. I fear I will get trapped in the deep abyss of fear and loathing and never return.
My newly paralyzed friend, Michael, shared some of his fears and over riding anxieties with me this weekend and he wonders if anyone understands or possibly knows what it is like to live with such mind numbing and debilitating fear. I want him to know I understand. I understand the mind power it takes to overcome these things and to peel myself out of bed everyday. I know the will power it takes not only to propel myself, but also strive for better, yearn for the good. I know the mental battle it is to care for a damaged and broken body and the courage it takes to build a positive fortress out of the wrecked and ravaged bones and soul. But, I also know how to fight the fear, how to allow the goodness to win. I've been a fighter and believer for twelve and a half years and have yet to give up.
I find the flickering flame of faith and hope and stare at it until it becomes blinding. I latch onto the hope and try my best not to let go of it. I focus on the moments my family swoops in and offers assistance financially or emotionally. I focus on the MRIs and blood reports that after twelve years, finally show infection free bones and blood. I try ever so hard not to let go of the joyful and grateful feelings that come from moments with friends or my dog. Or come from a good meal or just sitting and watching a movie or reading a book. I focus on the good, the kindness, and the love that only suffering can plaster so brightly on a billboard. In our darkest moments, we find the greatest strength. I fight the fear with every bit of hope I have inside of me and I have the audacity to believe it will prevail. Because, in the end, hope is the only antidote for fear. Hope, sweet hope.
There are small fears, like the ever present worry of a fall outside without a cell phone or flinging my chair too far when I flip it over while I'm sitting in my car and putting it together. The fear of dropping hot food or spilling boiling water on my lap. And there are large looming fears like the shock of autonomic dysreflexia, which is a reaction to the autonomic (involuntary) nervous system to over stimulation, resulting in severe hypertension or high blood pressure. It is a fatal condition and can occur without much warning at all and happens because of very simple reasons. Simply waiting too long to use the restroom is an example of a stimuli of autonomic dysreflexia. And if it is not quickly treated or noticed, this reaction is fatal. Wounds anywhere below my line of injury can quickly form, in about ten minutes, because of clothing that is too tight or because I sit too long on a hard surface without a proper cushion. Even a regular couch can cause a wound if I am not diligent and remember to switch positions, relieveing pressure on specific points of my body. And when wounds develop, the risk of infection is enormous. Any type of infection, at any time, can sneak in and reek havoc on my body. Preventing infection, especially urinary tract infections, and pressure relief become a part of daily life. And after I finally talk myself out of these fears, I am left with the numerous fears that come with normal, everyday life. Fears I am sure everyone shares, but mine seem to be on a much larger scale. My security is always a risk, both financially and personally. I'm constantly anxious I will run out of money and be too sick to work or worry I can't run from someone who tries to attack me.
And then there are the emotional troubles and fears. I fear someone will never love me or posses the ability to handle such a life on a day to day basis. I trouble myself with others' perceptions of my reality and how they view my struggles. I fear I will get trapped in the deep abyss of fear and loathing and never return.
My newly paralyzed friend, Michael, shared some of his fears and over riding anxieties with me this weekend and he wonders if anyone understands or possibly knows what it is like to live with such mind numbing and debilitating fear. I want him to know I understand. I understand the mind power it takes to overcome these things and to peel myself out of bed everyday. I know the will power it takes not only to propel myself, but also strive for better, yearn for the good. I know the mental battle it is to care for a damaged and broken body and the courage it takes to build a positive fortress out of the wrecked and ravaged bones and soul. But, I also know how to fight the fear, how to allow the goodness to win. I've been a fighter and believer for twelve and a half years and have yet to give up.
I find the flickering flame of faith and hope and stare at it until it becomes blinding. I latch onto the hope and try my best not to let go of it. I focus on the moments my family swoops in and offers assistance financially or emotionally. I focus on the MRIs and blood reports that after twelve years, finally show infection free bones and blood. I try ever so hard not to let go of the joyful and grateful feelings that come from moments with friends or my dog. Or come from a good meal or just sitting and watching a movie or reading a book. I focus on the good, the kindness, and the love that only suffering can plaster so brightly on a billboard. In our darkest moments, we find the greatest strength. I fight the fear with every bit of hope I have inside of me and I have the audacity to believe it will prevail. Because, in the end, hope is the only antidote for fear. Hope, sweet hope.
"You are the community now. Be a lamp for yourselves. Be your own refuge. Seek for no other. All things must pass. Strive on diligently. Don't give up."
~Gautama Buddha
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