Wednesday, January 30, 2013

The Power of Thoughts

But do not ask the price I paid,
I must live with my quiet rage,
Tame the ghosts in my head,
That run wild and wish me dead.
-Mumford and Sons, Lover's Eyes

I struggle quite a bit with my thoughts. For a long time, especially after my accident, I let them run wild and didn't pay enough attention to their power, their stronghold over my life. I felt as if the thoughts just came and went and I didn't have control over them. And then, I slowly became aware of each and every thought and its affect on my life. Depression, for me, is the frequency at which these thoughts occur. I soon realized how often my mind pictured negative outcomes and succumbed to pessimistic thoughts.

Life in a wheelchair, as a paralyzed person, is hard. There are ways of life much more difficult, but it is hard nevertheless. When I wake up in the morning, I can't just hop out of bed as I once did, prior to my injury, and pour a cup of coffee and start my day. I have to slowly sit up and stretch my limbs so I don't faint as I get in my chair. My circulation is changed and is poor, so I have to work to keep it moving properly. Going to the bathroom without thinking is no longer an option either. It takes twice as long and takes more effort to manage. As soon as the day begins, I must pay attention to my fluid intake and what food I eat. Too much or too little or too much of the wrong food or drink can have lasting and frustration consequences throughout the day. I prefer to exercise first thing, so having a cup of coffee right away is not an option. If I do, I must stick close to home where I can use the restroom at my leisure. Coffee is a diuretic and greatly lives up to this classification. If I do not stay on top of a bathroom schedule or have the option to go as soon as I feel I need to, many messy problems ensue. In addition to stretching and moving slowly, as not to send blood rushing to my feet, I must take care of my wounds or any issues I may be having at the moment. Wounds must be cleaned and bandaged carefully, to prevent infection and promote healing. Finally, after all of the self care or body care, I can finally start my day. Any task I take on, whether it is laundry, the grocery, or cleaning a cabinet takes twice or three times as long as it used to. I also reach a level of exhaustion sooner than I would like. I quickly feel my body giving up and wanting to rest. I choose to push through and each task and each hour becomes more and more difficult. Cooking a meal or doing the dishes becomes an event in and of itself. Sometimes, after preparing the meal, I am too tired to eat and then clean up the mess. Moving around the kitchen requires balance and monumental effort. My kitchen isn't very accessible, so stirring with my arms up in the air or doing dishes with my arms raised and extended, is quite a workout. After a day of propelling myself with my arms, they have little energy left. There are many days when I just want to crawl back in bed and give up and forget my life.

Very quickly and very early on, I stared noticing just how strenuous my new life was. I tried to balance class or work with the daily full time job of caring for myself and something always suffered. As I became more ill and suffered constant fevers, I saw my frail body wither away and become more and more weakened until it didn't have much left to persevere. I felt a deep desire to achieve my goals and overcome my obstacles, but my new body and its illness were winning. I suddenly felt just how in charge my body was, I no longer had a choice. When the body is ill or injured it is in charge. It comes first and dictates every, single activity. I try to explain this to well or able bodied people to no avail. I can't explain what it is like to want, with every part of my being, to go to a regular job and eat and drink what I want when I want. I struggle to express what it is like to have to leave something because my body is failing and needs aid only home can provide. I hear people talk about vacations or days off or Friday night plans and know that I will never have a true vacation or day off from anything. My job, my quiet and unnoticed job, lasts all day, every day. I can't stop it or walk away from it. If I do, even for a second or a brief moment, my body retaliates in return. The idea of completely focusing at work or on a task is foreign to me. I know I can find any job or start any task I would like to, but eventually, my health and my body will be the focus once again. After a few years of fighting against this life sentence, my thoughts quickly turned dark and stormy. The balance I was striving to achieve was just not possible. The scale always tips in the direction of my body and its needs. Always. I don't have a choice. I would sob and beg for this to change, but I knew, deep down inside it never would and never will. It is my situation now. I let the voices in my head that tell me to give up and cry take over, I let the bad thoughts win. It is hard not to allow them to win. When everything I do or try ends up in disaster, the negative quickly takes over and doesn't let go. For a long time I released myself from feeling anything good or positive. I decided this life was what it was and I couldn't change it. And while I still can't change it, I soon learned, the one thing I did have control over, the one thing I could change, was how and what I thought about it.

I am sure depression is different for everyone. It manifests itself in anger, sadness, and all kinds of other ways. As a twenty year old, I wanted to be out with my friends and enjoying the pleasure life had to offer. I wanted to have a regular job with regular hours and then meet friends out for dinner or at a bar. I wanted to exercise early before work or hit the gym on the way home. I wanted to be normal, or my idea of normal. I didn't want to be at the doctor's office or in bed with a fever or managing a vomit schedule. And after trying to compete with my body and seeing every type of doctor under the sun and reading and thinking and crying and begging, I finally took charge. I was willing to try anything and everything to feel well again, both physically and mentally.

It is a common belief that our attitudes and energy shape us, I just wasn't aware how much. After trying a plethora of fixes, I found myself in the self-help section of the bookstore. This isn't a section I ever frequented or wanted to frequent. After perusing the aisles, I finally decided on a book by Elizabeth Lesser. Oprah had her on her show a few times and I thought I should try to at least read one of her books. I hesitantly carried the thick, paperback book to the counter, wondering if I was throwing away twenty dollars or if this book might actually help me. For a second, I thought about Charlotte from Sex and the City trying to purchase her first self-help book and suddenly realizing her embarrassment, putting it back on the shelf, and running home to order it on Amazon. I turned around to head back to the shelves and copy her performance, but then decided the first step to overcoming my issues was to probably not be embarrassed by them and be willing to admit them. So I plopped it on the counter, paid for it, and drove home. The book sat on my nightstand for a few nights, unread and unopened. Then I opened it one afternoon and started reading. And once I started reading, I couldn't stop. I read how she felt so broken, so unable to move forward, how the noises in her head took over her body and her mind and she fell deeper and darker into a self-fulfilling depression. I, until this moment, never considered my part or my responsibility in contributing to my thoughts and downfall. I read how she started with one thought and decided to change it. And after I read her book, I became a self-help regular. And I didn't discriminate. I read everything from Martha Beck, the Bible, St. Theresa of Avila, Eckhart Tolle, Rumi, to Wayne Dyer. I became more familiar with this genre than any other genre and I am a Literature major. I started to see the commonalities of the words of these authors and how I was reading the same advice over and over, in many different forms. All of the authors urged personal participation in thoughts. All of them stated awareness of the mind as a must. I started with small thoughts, changed those, and then continued to the big thoughts, like those concerning my health. And as I changed my thoughts, I noticed my life started changing. I stopped loathing my choices and decisions I once felt were forced upon me and learned they were choices and decisions every has to make for a better life. Eating well and watching what I put in my body isn't a bad thing. Taking time for myself, meditating, praying, writing, and thinking all make me a better human being and help me to live longer and more peacefully. I became an advocate for positive thoughts and good energy. And yes, the voices calling me, pulling me to the dark side are still there trying to break through the positive fortress I have built, but they no longer win. Some days they pull ahead, but they never cross the finish line. It sounds so silly and almost too easy to trust and know that thoughts change a person, but I am here to tell you they do. I pulled myself out of so much darkness and pain, with just a change of thought. My thoughts started affecting my life in a positive way. I became stronger and more healthy in all areas of my life. I slowly let dreams and my imagination return. I realized I had two choices, I credit this discovery to Dr. Wayne Dyer, I could think or imagine the bad outcome or the good outcome. Both have a fifty percent chance of happening, so why not pick the positive or life fulfilling option? I am not going to tell you miracles happen now, I still struggle to change my life and my thoughts on a daily, hourly basis, but my life and my mind have so much more peace and I allow things to just happen, knowing they will all turn out for the best in due time. Things I assumed would never happen or never believed would actually happen in my life are happening. I feel better, stronger, and more assured every day. I am my thoughts and I took control of them. It isn't magic or something goofy or mystical, it is actually a piece of ourselves, a piece of my body that I have control over and instead of allowing it to run wild, I decided to tame it. Just try it, I think you will see how powerful you truly are and when we feel powerful and confident, we accomplish many goals and live many dreams. I am living proof.

One of my favorite things to do now is to make vision boards. My greatest dream and largest vision is to be alive, living, and breathing, I have this and I am grateful. In addition, I want to live better, love harder, and reach higher. I never want to stop moving forward and guiding myself towards the good. Again, this is something I once thought kind of out there, kind of too much like The Secret, but I tried it one day, a few years ago, and was surprised at how much better I felt. Every year, instead of ridiculous resolutions I never live up to, I make one in January and I just finished mine. I list all of the hopes and dreams I have, then look through magazines, books, whatever I can find, and cut out pictures or words or phrases that remind me of these dreams and hopes. I don't focus on the material or physical aspect of the photos and words, I focus on the feeling they conjure inside of me, the love, kindness, and peace they encourage me to give and to receive.  I then make a collage and look at it as often as I can. I notice my prayers, my meditations, my thoughts all turn towards my hopes and dreams, what is on this board. It also makes me realize how common all of our hopes and dreams are because when I look back and notice the major themes of the board, it is what we all want. We all want love, kindness, peace, and all of it in abundance. And if I have an especially rough day, I look at the board, and through my tears and anxieties and worries, I start to see the light. I begin to focus on the good thoughts. I urge you to sit down, take some time and make one, only to see your dreams in pictures. It's a good thing to see every once and a while.

These boards aren't really supposed to be shared with anyone because everyone has an opinion on everyone else's dreams and hopes and to tarnish these gives way to bad thoughts, but I want to share to encourage all of you. Your board is your board, no one can judge your thoughts.

Now, in addition to my vision boards and positive thoughts, I have another source of good...your comments, your emails, and your thoughts. On days when I feel like I have no idea what I am doing or if I am on the right path in my life, I read your comments. I see how each one of us is struggling, each one of us has issues, each one of us has dreams. We all take part in lifting each other up, let's do it for ourselves as well. Thank you ever so much for contributing to the good thoughts that run wild and free in my mind.

Tuesday, January 15, 2013

The Greatness in All of Us

I am so small I can barely be seen.
How can this great love be inside me?
Look at your eyes, they are small but they
See enormous things.

Most of the time I feel a victim of my needs and my routine. I tend to feel it is so difficult to escape. I wonder how I will ever do anything more than get through each moment. And there was quite a bit of time when waking, showering, dressing, eating, and caring for myself were quite enough to handle. There was a time when the smallest gesture of anything from me seemed so impossible, so unlikely. I desire to find the greatness and potential festering inside of me. I think we all do. And until last week,  I thought it had to be something grand, something lasting, something ineffaceable. The latter two are definitely true, but the grandiosity is certainly not true. The answer is much simpler, much easier to achieve. The trail I want to leave, the path I want to carve, it is that of love and kindness and compassion. It may sound cliche or trite, but, I believe, my potential, my greatness, comes from the love I have and the love I offer. Nothing more, nothing less.

In a world so riddled with sadness and suffering, it appears love is a tiny dot lurking among many huge ink blots of pain. It can seem like the only way to see it is to get out a magnifying glass and will myself to find it. But this is not true. You see, I believe, amongst the blobs of tragedy lie some of the strongest potential and greatness possible. And when I look, really look, I see the enormity of the small dots and when they are all together, they make monstrous, indelible ink blots all of their own. My accident and the years following taught me to see these dots, really see them.

Last week, as I was rushing around trying to cross many errands off my list, I paused for moment, remembered and noticed, all of the tiny dots of love in my life, begging to be seen as giant blots. As I was packaging up a book for a dear friend, who recently lost a baby, I felt my heart pounding and eyes throbbing and I couldn't figure out why. Of course, I was terribly sad for her loss, but something else was tugging at my once tough and rigid heart strings. I wanted to go to her and be there for her, but because of my schedule, my routine, my needs, I couldn't drop everything and run. I could only do what I could in the moment and that was to gather a book and some DVDs, because when I was sick and alone, I craved an escape or two. I knew the book and discs wouldn't solve any of her worries or her pain, but it might take it away for a brief and fleeting second. And as I wrapped the book in the padded mailer and tucked seasons one and two of Downton Abbey in with it, I remembered an instance, a once small and fleeting gesture that now seemed so enormous, so overwhelmingly kind and loving. I finally understood the greatness of the small gestures of love. Several years ago, as I was escaping my prison of pain, this same friend extended herself, her kindness, her love to me. It may seem silly, but it was and is so immense to me. We were out at a bar, I promise I don't frequent bars as much as I discuss them, but I was in my twenties and that's where one goes in her twenties. We were at our local bar watching a friend's band. Going to the bathroom in bars is quite a challenge. There is usually only one stall or maybe two and they are small and dirty and crowded. The lines wrap around and are never-ending. This friend always jumped up to accompany me whenever I had to go. She assumed it as her duty. Something I took for granted, but see now as so lovely and so kind. This particular bar had two restrooms, each their own room. She came in with me in case I needed anything and stood at the door while I performed my bathroom dance. And as girls do, we chatted the entire time. And while we were cackling, we heard a huge, loud, obnoxious knock at our door, along with a drunken scream, "Hurry up in there, the rest of us are waiting, Jesus, how long does it take to go to the bathroom!" And then we heard a lot of laughter. I was mortified. I was moving at the speed of light for me, but I am never fast now. It just isn't possible. And my friend, briefly paused, turned, and just like the steel magnolia she is, raised her fist above her head and pounded back on the door so hard I felt myself jump and was worried the door would crack. And as she ferociously pounded, she broke from her sweet, southern voice, and shouted back with the greatest of fervor, "Hey why don't you shut the #$%@ up, my friend is in a wheelchair and is going as fast as she can. Why don't you just stand on your two working legs a little longer and wait. She will be out when she is good and ready." Then she turned around, as if nothing happened and picked up our conversation, without missing a beat. The pounding and laughter from outside the door stopped. We weren't bothered again. And as we exited the restroom, all of the girls stepped aside, smiled, and apologized over and over again. My friend walked behind me, protecting me, in case anyone dare try anything again. My friend protected me. She came to my defense, stepped outside of herself, offered her assistance and refused to allow me to feel bullied or rushed. She didn't care what anyone thought of her, she only thought of my feelings, my comfort. As the years went on, she did this kind of thing again and again. And as I watched her fearlessness when defending her friend, I soon learned this was the action of a true friend. This is how to stand up for a friend. Her actions, her gestures, no matter how small, were huge and blaring acts of love and she showed them any way she could. As I taped her package and secured the label, I realized why I was so eager to do something, anything. I had to bang back on that door for her this time, I had to step up when and how I could, if only to return the favor, pass on the love she taught me to give. And one of the most awe inspiring things about acts of kindness, is they multiply like wildflowers. Once someone is shown grace, he or she passes it on and the cycle of paying it forward can't be stopped. As I handed the post office lady my package with the prepaid label I purchased online and started to wheel out of the post office, she called me back. I only counted the weight of the book and mistakenly forgot to add in the weight of the discs and the packaging. I still owed $1.15. It was pouring down rain outside and I only grabbed my driver's license and keys as I left my home earlier. Before this stop, I walked my dog at the river, as I do every morning, always without my wallet. I didn't have any money with me. I took the package and was planning to search my car for change to make up the difference. But then, another lady waiting in line behind me said, "Please, please just add it to my order. I am happy to pay the difference. I don't want her schlepping back out in the rain. It is the least I can do." I told her I could not let her, but she insisted. I returned to my car, scrounged up the change and waited for her to come out of the post office and when she did, I tried to give her the change and she said, "No, please just let me do something kind for you, please." Here it was again, a small, tiny dot to add to all of the others.

Again and again, I see the greatness in others. I see souls sparkle and hearts with wings. I see twenty something girls, who are unfairly accused of being attached to their phones, drop everything and run to push me up an icy hill during a snowstorm. I see friends and family picking up cases of water or the salt and vinegar chips I love and leaving them at my doorstep. I see everyone rushing to hold doors or offer to carry things. People never fail to ask if I need help folding or unfolding my chair or offer to pick up my dog's poop for me. Nothing is too small or too great. I see a dear friend, who has worked tirelessly to keep me alive for the last twelve years and no matter how much I fight him, he always comes running. He picks up the phone during the wee hours of the night when I think I can't go on for another second and listens to my sobs and tells me over and over again, "You'll get there, it will be better, you will see." I see doctors and nurses who stand up for me when so many have failed me. I see old friends welcome me back with open arms after years of my isolation, depression, and illness have torn us apart. I see it all and argue with gusto, that love really does exist. It may be sprinkled among the vast and never ending suffering that makes up our human world, but it is here. And when the pain seems so deep, so tremendous, so heart wrenching, I remember the gestures. I realize the greatness of the small deeds. Suffering is not and will not be eliminated. It is part of the human condition. It doesn't happen for a reason or because of a plan. It just happens. The only way to appease it, to lessen its blow, is to extend the hand of love and kindness. It teaches us, that really and truly, the greatest gift we can give is love. So simple, but so enormous. It is something we all can do, it is a greatness we all posses.

-For my dear Ashlea, who helped me learn how to be a friend.

Thursday, January 3, 2013

The Gift

I know exactly when my infection started. I feel like I knew something was really wrong all along, but doctors continued to tell me otherwise. My fight to understand and discover what caused fevers capable of starting a fire and daily vomiting never waned. There were countless days I wanted to give up, give in to what the doctors were telling me, give in to the doubts, and just let go, but for some reason I didn't. Instead, I listened to a tiny, whispering part of myself. A part of myself that encouraged perseverance instead of doubt. I ignored the urging of my soul the day of my accident, but this time, this time I didn't and it paid off in dividends.

After six months of rehabilitation, I returned to college. In retrospect, it was probably far too early to dive back in to school, but I didn't have any where else to go. Miami University was my world and where I was living when I fell. It seemed like the right thing to do. Immediately, I knew I was struggling. I knew I couldn't handle adjusting to this new normal so quickly. Instead of admitting defeat and trying something new, I fought and fought to return to my old life. In addition to attending classes everyday, three times a week I had to travel to physical and occupational therapy in Cincinnati, an hour away. I loathed waking up in the morning facing my life. As if getting dressed wasn't enough of a challenge, I also had to figure out how to make it to class on time, eat well, do homework, and hustle to therapy at the end of each day. An hour to and from made the whole experience rough and unbearable. So much of me wanted to just stop. It is embarrassing and humiliating to admit the frequency with which I thought dangerous and suicidal thoughts. I would have devastating falls to the floor and have to call my best friend Briana to rescue me. She was a college student too, but ended up spending her college years caring for and rescuing her friend from a number of situations. She always came running and quickly learned how to pick me up and put me back in my chair all on her own. Briana would arrange nights out for us, calling ahead to plan for accessibility. She would encourage me to meet her at dining halls where I was too afraid to wheel myself. She would stand half way or at the top of the hill so I could see her and wait patiently while I tried to master the route myself. Because of her, I eventually learned wheel myself all over campus. It was too much for someone else to bear, but she did it and to this day I can't think of her or talk to her without crying the happiest of tears. She will forever be one of the brightest moments of such a dark and scary past.

I stayed at Miami University during the summers. I took a very light load of classes and tried desperately to catch up with what I missed during the regular semesters. The second summer I stayed was when I know the infection started. I was rushing to take a shower before physical therapy. Earlier that morning, I sped to class, ate very little, returned home, and jumped in the shower with only twenty minutes to spare. My old self, my walking self, would have handled this scenario without an issue. But, my new self, the paralyzed self, needed more than an hour to complete such tasks. I still am surprised and overwhelmed by just how long it takes me to complete my routine or daily tasks I once flew through with ease. It used to reduce me to tears, but now I just get through it and know that it is just time and all will be well, no matter how late I am. Rushing is never, ever worth it. The shower is especially tricky because of the soap and water. My legs are dead weight and if not balanced properly, can easily slip and buckle, forcing the top of my body to plunge to the floor along with them. And that is exactly what happened this hot day in July. I felt the force pulling me down, tried to grab bars and anything I could to prevent such a fall. It didn't matter what I did, I knew I was going to hit the hard, tiled floor and I did. I heard my body hit the floor. I knew it was a devastatingly hard fall. Luckily, I was able to pick myself up and return to my chair. It took a few tries, but eventually, I was sitting upright. I felt relief because I was back in my chair and couldn't find any blood, but fear because I knew what I probably did to myself during the fall. I grabbed my mirror, a hand held mirror my therapists gave me to check for bruising or cuts in a situation like this. My legs were fine, but then I saw it. Right where my "sit" bone is, was a huge, red, throbbing mark. It would eventually become a nasty bruise likened only to one received in a football game or a rugby match. And because I have to sit all of the time, the pressure right on the bruise did not help. The bruise gave way to an open and nasty wound. It started small and scrape like, just as most things do, and over time festered until it was large enough to hold a few baseballs or as my dearest friend Justin commented, "you could smuggle drugs in this thing." Humor is always welcome, no matter how dry and dark. Justin's humor has sustained me through many of my most upsetting and difficult moments.

As the wound started appearing, I quickly called doctors and nurses, anyone I could think of to tell my news. During therapy, I was warned of wounds, wounds, wounds, and how dangerous they were. Because of the nature of my injury, I was assigned a Case Manager. Just writing that sentence makes me throw up in my mouth a little. The woman I was assigned may have had a plan all along or maybe she became caught in a web of her own making and couldn't get out of it, I don't know. I don't really care what her reasons were for doing what she did. She saw an opportunity and pounced. She saw a young, naive, lonely girl desperate for help and took full advantage. The story of this woman deserves its own post, but her manipulation of facts, doctors, and my insurance company played a huge role in the loss of a decade of my life. After I called her, thinking she was my go to person for help, she came up to Miami to see my wound for herself. This is so unprofessional, so out of line, but I had no idea at the time. Her comment was, "well this isn't really a big deal at all." I begged to make an appointment with my doctor at the time and after days of pleading she finally caved and set up the approval with the insurance company. Unfortunately, the doctor, Dr. K I will call him, was not very seasoned or knowledgeable about paraplegics. I'm not sure what he knew, but he didn't know about my condition. He saw the wound and told me "not to do anything, it will just go away on its own." I knew this was silly advice. Everything I learned up to this point was the opposite of his reaction. Of course, as a young twenty year old, I preferred Dr. K's answer, but I knew deep down inside it was ridiculous. About a month later, as the wound grew and grew, I smelled a funny smell coming from it and was also draining. Both of these were terrible signs of infection. I tried once more to see Dr. K, but he sent me home, yet again. The fevers started and never stopped. I would lie in my room shaking and shivering. I pushed my Case Manager so hard she finally made an appointment with a plastic surgeon. Yes, I am aware this sounds like the dumbest way to treat a see a plastic surgeon. I didn't have the knowledge I have now and I went along with her bogus plan. Not only did she know this surgeon, she also received botox from him as a trade for referring me. Because of my weakened state, I started to form heel wounds on each of my heels. Brilliant Dr. K ordered ancient leg braces and insisted I practice walking in them, with tremendous amounts of aid, to strengthen my core and my legs. Instead of gaining anything positive from this experience, I ended up with two more gaping wounds. My Case Manager recommended and arranged an appointment with a podiatrist. Another brilliant move on her part. It is actually very painful to type and relive this knowing what I know now. I would never stand for these decisions now, but I did and I paid for it. I continued to show up for appointment after appointment. Nothing was healing. And when I say not healing, I mean really not healing. The wounds grew deeper and wider and more and more infected. My fevers continued to rise and the nausea worsened. I was referred to a urologist. The urologist performed test after test, trying to determine the cause of my symptoms. He prescribed countless antibiotics trying to stop the fevers. As I became more and more ill, I also became more and more of an expert. I learned what antibiotics kept the fevers at bay and began requesting them like a drug addict. At one point my urologist became so frustrated he finally said, "I can't just keep prescribing antibiotics without knowing the cause of the symptoms and type of the infection. And why am I the only one giving you antibiotics?" My Case Manager didn't appreciate this challenge and so we left him and the antibiotics. The plummet downhill became fast and fierce. I rapidly lost weight and fevers and vomit became a part of my daily routine. I saw doctor after doctor and no one could determine what was wrong with me. I was sent to an anorexic and bulimic psychiatrist and suffered the humiliation of being told "it was my own fault" I was not progressing. My only orders were to eat more and gain weight and fast. One of the many psychiatrists said, "Now you know you don't get fevers from anorexia?" I felt like saying, "duh." And I am pretty sure I said it outloud. After years of struggling to live with so much pain, so many fevers, so many days and nights in my bed, so many showers because of vomit or other accidents, I almost gave up and let go. I was so tired and so depleted. I tried to make the best of it. I tried to do fun things to take my mind of the hell I was living, but nothing helped. One evening on the way to a Greek Festival with friends, I noticed huge red streaks up and down my leg. I rushed myself to the emergency room and was given an oral antibiotic. The streaks left, but the symptoms didn't stop. My blood counts became so low I had a blood transfusion. My symptoms were getting worse my the minute. The doctors I saw tried many methods to heal the wounds, I even had to wear a machine that made tooting noises as it gurgled the fluid draining from my wound. I wore the machine to bars, to work, to dance competitions, everywhere. Any vanity I had quickly flew out the window. Massive and complicated surgeries were recommended and I refused. For some reason, I knew I was infected and knew I would never heal from surgery. I still can not believe I listened to myself and continued to refuse. Had I given in and undergone the surgery I would probably not be here today. And amongst all of this something happened that changed the course of everything.

I firmly believe good can come out of the bad, the devastating. I was unsure of this before, but now I know it to be true. When things look their absolute worst, when you count yourself out the most, this is the time when grace can and will happen. It may not come in the form you expect or you want to happen, but it comes if you allow it. I was so tired of illness that I felt like I needed a break. I just wanted to get away. I did this often, but for some reason this time was different. I was terrified to leave, but forced myself to go away. I went to a dance competition with the hens. As we were driving, a circuit was tripped and a heat seat in the car, in the seat where I was sitting, was left on for hours. I didn't have a clue how hot it was getting because I can't feel anything from the waist down. When we arrived at our destination I will never forget the moment Bridget helped me out of the car. As she helped guide my tiny, frail, broken body into my wheelchair, she very quietly said, "Sar, your pants are soaking wet." I thought I had a bathroom accident and was mortified. Mortified mostly because Bridget, a young girl at the time, had to witness something so awful. I knew how sensitive she was and how much it hurt her to see me struggle and I never wanted to her to have to deal with my pain. I wanted to protect her from the ugliness of my reality. I went straight up to my room and started to change. Only, it wasn't a bathroom accident. My pants were just soaked in one area. I decided to take a shower and as I was rinsing off and soaping up, I felt it. I felt the largest and widest and deepest burn I've ever felt or seen in my life. It was larger than my hand. The wetness on my pants was the blister that had just popped. I bandaged it and went on with the weekend. I had no idea what to do or what to say, I just froze with fear. After two days and after I returned home, I got out my trusty mirror and saw the burn. It looked like something right out of an episode of Grey's Anatomy. I called my Case Manager because I still wasn't bright enough to realize her part in all of this and you guessed it, she called her trusty plastic surgeon. But this time was different. I knew something was different. Fear was dominant, but relief was also back again. Somehow I knew the plastic surgeon wouldn't treat this burn. He didn't even want to see me this time. Finally, he said he couldn't treat me anymore and referred me to a wound clinic. The fact that a wound clinic even existed was a miracle to me. I spent a number of days and nights searching and googling about wounds and infections and every thing I read urged patients to seek care at a wound clinic. I asked my Case Manager about this and was always told my city didn't have any. But now, suddenly, one existed and I was allowed to see the doctor. Unfortunately, this doctor took the burn seriously, but not my infection. He put me on the wrong IV antibiotic, but it was enough of one to calm my symptoms for a bit. And when I was without fever for any length of time I began working on research, determined to figure out what was happening to my body. As I googled "heat seat burns" I learned I should probably find an attorney. So I did. And though the first one I found was a sheer disaster, the second one I called was a gift. I never will forget the day I called. I was met with such understanding and compassion. Finally, someone was willing to help me. Sure she was an attorney and not a doctor, but she helped me more than any other professional up to this point. And in going over my medical file, she found a smoking gun. She found the pathetic trail my Case Manager left. She saw the timeline of the horrific care I was receiving. And when I left the first wound clinic and went to the second one, she sniffed out the errors made there too. And because of her patience and detective work, I saw the mistakes. I stopped taking the answers and advice I was given. I knew the recommendation to just gain weight and eat more was futile. I knew it and I had back up this time. The nasty, awful burn ended up saving my life. Yes, it did set me back tremendously, and yes, it was almost too big to heal, but it saved my life because it brought me to my attorney. It brought me to a kind and loving friend that urged me to refuse to take the treatment I was given. People like to give lawyers a hard time for being cold or callus, but that is not my experience in the least. They are mothers and fathers, sisters, wives, and friends. And finally, finally, I had someone on my side.

I called the insurance company and told them what my Case Manager was doing, how she was manipulating the situation and keeping vital information from them. I saw her for two minutes after my discovery, she tried one more time to meet me at an appointment and beg for mercy, but as I looked into her eyes and saw her weight gain and her adult onset of acne, I saw the fear in her eyes, the fear because I knew what she was doing. I didn't need her to say anything more and I didn't need to say a word. I just said okay to what every she was spewing and left. I left the second wound clinic, requested my chart and never looked back. The doctor at this wound clinic left so many emotional wounds it took me years and years to recover. He allowed my infection to smolder and rage on so much that it caused yet another wound, this time so deep, it exposed large sections of bone. Something I never want to feel and discover again. Recently, I finally gained the courage to write him and tell him the penetrating scars he left. I don't expect to gain anything from my letter other than the hope he won't do it to some other innocent, sick, and vulnerable person. If I can save one person from his poor and incompetent care, my struggle will be worth it. I left the clinic and made my own decision on where I wanted to go and sought my own approval from the insurance company. I was assigned another Case Manager who turned out to be just as bad, but immediately requested another one. Finally, I was assigned a Case Manager who actually manages my care. The one I have now is another reason I am doing so well. Her professionalism and ethics are astounding and her willingness to help properly and offer appropriate care is irreplaceable. With her help and guidance, I became my own advocate. I didn't take no for an answer and I still don't take no for an answer. This time was different. I was in charge. I just needed a tiny seed of confidence and I found it. I wheeled my damaged body to the office of my choice at the hospital of my choice. I fought for the doctor I wanted and finally, because of a huge stroke of luck, saw him and became his patient. He took one look at me and said, "it looks to me like you have a pretty bad blood infection." He scheduled tests and referrals. I didn't have to do a thing. A doctor finally took care of me and took charge. He sent me to an infectious disease specialist. For as long as I live, I will never forget the cold, October morning I went to see my ID doctor. I drove myself and parked right by the door. I was ready to hear what I had always heard, gain more weight, eat more, blah, blah, blah. I sat alone in the patient room, chilled with a fever, scared, confused, and hopeful all at the same time. Suddenly, something inside of me was telling me this was it, I was going to know what was wrong. The doctor came in and sat down beside me. He very gently explained that I had a raging, aggressive blood infection. He found an old fax in my chart from one of my many emergency room visits detailing the type of infection. The fax was from at least six years prior. He did more blood work to determine it was in fact what he found and then sent me straight to the hospital for yet another PICC line. He explained this infection was so big and so difficult to treat, it would take three years of antibiotics. The IV antibiotics would only last for a time and then I would start a round of two oral antibiotics. He asked how I managed to stay alive all of this time and we discovered I figured out how to keep it at bay for part of the time with certain antibiotics. I never was able to get rid of it, but figured out how to keep the symptoms down here and there. I probably should have been devastated to learn I had a more than difficult infection to treat, one that doesn't always respond to treatment, but I wasn't devastated at all. In fact, I felt like I won the lottery. I finally knew I wasn't crazy, I wasn't causing my own demise, I wasn't pathetic or needing to eat more, or a waste of space. Everything every other doctor told me was wrong. These two doctors finally figured it out. I wheeled as fast as I could to my car because I knew the tears were coming. I felt the pain in my jaw before a good cry comes. I felt the knot in my throat. And when I got in the car I cried and I cried. Not because I was sad, but because I was so happy, so thrilled to finally know what was wrong with me. I took the pain of the PICC line insertion like a champ. If you have had one before you know having it put in is one of the most excruciating things to ever experience, but I didn't care. This was at least my fifth PICC line and I could have cared less about the pain. I wanted to start the correct antibiotic so badly I was like a kid on Christmas.

After only two doses, the fevers stopped. After a week, I stopped vomiting. I still had and have issues with eating because I am so afraid my food will come up, because it did for so long, but it gets better every day. And getting over it is nothing compared to what I went through, nothing at all. It took a long, long time to finally get rid of the infection and took even longer for my wounds to finally start healing, but they did. The massive wound with exposed bone is now miniscule. Where the burn was is still a little, tiny opening that closes and then opens again, but it is under control and will heal as well. I still see my favorite doctors regularly and still experience small setbacks, but progress is rapid and healing completely is imminent. And although I still have days where I can't seem to climb the mountains I need to, I know I am already at the top of Mount Everest. I feel like the last ten years of fighting this infection and finally healing were lost. I spent the entire time managing illness and hearing things a sick person should never have to hear, but despite all of this awfulness I made it. I don't need a celebration or a medal or an award. Every day I wake up and breathe and sit up and get in my chair is reward enough. I don't have a fever anymore. I don't vomit anymore and eat more and more every day. The rat race, greed, expectation, and social expectations are lost on me. My imagination runs wild with dreams, but then I remember I am already living my dream. My bucket list is complete. I truly understand what the gift of life is now. I know the gift is found in taking one breath at a time.

There are many more details and stories to expound upon, but this is enough for now. I've been absent from blogging for so long because this is the first year, in ten years, that I experienced the holiday season as a well person. I turned 34 on the twenty second of December and this was the first birthday in a long time I wasn't sick. 34 is my new favorite number. I tried to be so present and soak up the moments, I was simply just too tired. I wrote so much, but just couldn't finish anything and I let it be okay. But, this is a new year and I have much to share. One of the first ornaments I pulled out of the box was my Irish Dancer ornament and her legs were broken. Both legs came off while she was in storage. I didn't glue them back on...I kept her just as she was to remind myself the broken is beautiful and the imperfect is what is perfect.