The first time it happened was two weeks into therapy at the rehab hospital. Surrounded by friends, I wrestled to lift my paralyzed legs, who once danced on their tip toes and kicked high into the air, one by one, onto the therapy mat. These legs now weighed more than I thought possible. I shed heavy tears inside, but kept a strong face of determination. And as I pierced my lips and breathed deeply, partly to stay focused, mostly to hold back the tears, I lifted my right leg and it happened for the first time in front of everyone. It previously reared its ugly head, but only in the hospital bed, surrounded by trained nurses. It is a part of paralysis that isn't talked about, only among other spinal cord injury victims. It is the part that is kept secret for fear of judgement. It is the part that leads to so much fear of scaring away partners, friends, and family. It is the loss of bladder and bowl control or as we former nannies like to call, a blow out.
Loss of function and paralysis, means complete loss of function and paralysis below the line of injury for me. Everyone is different. Some have some control over some things, some don't. For me, as one who is diagnosed with a complete spinal cord injury, it means everything below my belly button no longer functions. When I first learned this, when I first experienced this complete loss, I felt utterly devastated. Without a shred of hope, I assumed one day venturing out in the world impossible. I failed to see that I would ever gain control. I only saw humiliation the first time it happened in front of people. With eyes filled with tears, I looked at my physical therapist and asked to go to my room. I wanted to hide the shame. My friends waited outside the door and I didn't want them to come in at all. The cheerful and compassionate nurse cleaned me while sharing story after story of patients experiencing the same embarrassment. It didn't make me feel any better. I wanted to crawl in a hole and be left alone. But, the nurse opened the door and one of my friends came in the room. Justin walked over to me, now lying in my hospital bed, my comfort zone, and brushed away the hair on my forehead, leaned down and planted a tender and healing kiss. A simple kiss that said, I know this hurts. Words were not necessary. His presence, his taking a seat and pulling it close to my bed and just sitting next to me, they said enough. I knew he was there and I knew he saw inside of me.
Today, thirteen years later, I suffered from bladder spasms all day. This means, without getting too graphic, that my bladder releases itself whenever it feels like. I stay on top of my loss very well. I am very independent, don't use much to help, only the necessary items, and usually achieve great success. The healthier and more self-disciplined I am, the better the outcome. But, whatever success I may find, I never truly have control. This part of me is still paralyzed, like the rest of my lower body. Every time I have an accident, as I like to call it, I return to feeling humiliated and want to crawl into that same hole. However, today it was different, very different. I felt insanely grateful. Usually I am a mess. It usually flattens me. I wonder why it happens to me at the worst possible moments. I wonder why I deal with it at all. I wonder why just this part of my body can't just work again. I try to convince myself life would be infinitely better if only I controlled my bladder and bowl. Instead of the hole, today I chose gratitude. I chose to be thankful I was home all day, chose to be thankful it hadn't happened in quite a while, and chose to be thankful I was alive to deal with the suffering. It doesn't mean I didn't feel the pain, I just chose to be grateful for the pain.
Normally, I make a quick call to the doctor and decide how to treat what I assume is a brewing urinary tract infection. As a person with paralysis, this is something I live with constantly. The infections attack with a vengeance and sprout from many unknowns. Basically, they just happen. During the past several years, I took so many antibiotics, I feel my body just needs a break. Instead of trying the antibiotic approach first, I tried my little home remedy I created for infections like this. I promised to call the doctor if it didn't clear in a set amount of time. So, I hopped in the car, with necessary precaution, and drove to the Starbucks drive-through window and ordered a venti iced green tea. My method is to drink as much as I can, water and green tea. The tea seems to help the most. I drove home and waited for the infection to pass. During this process, I feel like I can't leave or do very much because all of my attention needs to focus on healing. And as I rested and nursed myself back to health, I thought quite a bit about past experiences. And this time, instead of reliving the humiliation, I found the joy. I found the lessons learned and I found the strength I used to move forward. I remembered that first time in the hospital. I remembered when it happened at a football game and my friend, Natalie, crawled under the public bathroom stall's door, time and time again, to fetch cleaning supplies, whatever she could find. I remembered how she made jokes and told stories of similar circumstances happening to her when she was pregnant or after a surgery. I remembered her tenderness, kindness, and love. I pictured Eileen rinsing and washing cushion covers and clothes in countless rest stop and hotel bathrooms. I saw Ashlea taking on a group of drunk girls banging on the bathroom door in a bar because I was taking too long. I saw my sister leaving a bar with me an hour after we arrived because I had an accident and needed to go immediately. I saw all of this and many more examples rushing through my mind. And the common thread that stuck with me, was not the accidents, it was the kindness and understanding. And as the day went on and I started seeing a light at the end of the tunnel, I saw my mom come over, drop off groceries, pick up dirty laundry, unload and load the dishwasher, and walk my dog. All of this brings me joy, not pain.
I have special needs. I just do. That's just the way it is. I can't always attend every dinner or every party. I can't drink exactly what I want and how much of it I want to drink. I pay for excess in dividends. I decline invitations and leave suddenly. I calculate proximity to bathrooms and fill my bag with my supplies. But, over the years, I learned this isn't so bad. I eat well, a lot of green stuff I used to loathe, I rarely have more than one or two drinks, and I stand up for myself and my needs. My needs probably prevent a lot of stupid mistakes. The forced discipline shows me the life I truly want to live. I am more awake, more alive, and far more aware of others. My heroes and heroines are those who exhibit high levels of self-discipline, self awareness, and strength, not those that throw caution to the wind. Sure, I can say if only I had this or if only I had that, but it doesn't change anything. I have special needs. And the thing I discover most about having these needs, we all have special needs.
Everyone carries a hidden humiliation or burden or secret he or she doesn't want the world to know. Everyone keeps hurt and pain buried deep down inside, afraid of shun if it is discovered. However, the truth is, once I let go of my pain, share my truth, it not only heals me, but also helps heal others around me. Because when one person starts sharing, everyone starts sharing. There is safety in revelation with someone who has already revealed. We realize we are not our failures, we are not our successes, we are human. And all humans basically want the same things. I may not live every one's pain. Mine may seem worse to some one else or it may seem blissful and easy to another. I can not fathom some types of pain, like living in a worn torn country run by rebels or starving because I can't afford to eat. What I can do is see myself in others. I can see the part, in all people, that wants to be loved, wants to feel kindness, longs for understanding. I can not only see these needs, but I can, to the best of my ability, give of myself. I learn to offer my kindness and understanding. I learn to smile more and hold doors when I can. I learn to sit with people in pain and help in disasters. It doesn't matter the size of the gesture, I find a way to help or extend that part of me I find in others.
We are all in this together. We all have special needs. Our hearts, our spirits, our joys, our sorrows, they are one. The outsides may be different, the cultures may be far apart, the needs may vary, but we are one. I choose not to feel separated by what I can not control. I choose to see the uncontrollable in everyone I pass. I choose to refrain from guessing motive or intention. I do not know why a friend declines an invitation or a cashier looks down or a fellow shopper seems frustrated. I don't know why and I don't need to know why. The only thing I need to do is offer understanding, kindness, and love. I need to be the person who listens, instead of judges. I choose to help. I am these people, these people are me. If these are things I need, these are things I need to give. Give of myself always, it is so simple.
Wednesday, May 22, 2013
Monday, May 20, 2013
Always a Rainbow
The Guest House
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
~ Rumi ~
So, here's the thing. I decided last week would be my big week of change. I assumed if I just stayed focused, all would go swimmingly well and I would be on my way to realizing all of my dreams. But, it didn't. I knew this is how it would turn out deep down inside, I just chose to ignore it. I don't think it has to go well, I just wanted it to. I know everything doesn't always fall it to place and work out perfectly, I know this very well actually, but sometimes I forget or, rather, want to forget. Look, bad stuff happens. It just does. It is something I have to live with as a human. Suffering is part of life. Living out that suffering, really feeling the pain of it and not alleviating it, is what matters and is what is important to growth and understanding. Eradicating suffering is just not possible or even reasonable. I sometimes allow myself to think I've had quite enough and I deserve a break and then I expect the break. And when it doesn't happen, instead of realizing another lesson is reaching out and trying to grab me, I get upset and defeated.
This past week, as I felt the clouds thicken, I wanted to give up again. I get really tired of things not working out the way I want them to. It is childish and petty, but I still let it happen. I do all kinds of work controlling my thoughts and thus controlling my reactions and actions, it is what works best for me. It helps me heal. One of the tenets of this type of thought master practice, is releasing the ego and understanding I am a spirit having a human experience, not the other way around. Essentially, I have a higher self larger, infinitely more loving, forgiving, and understanding, than my ego. My understanding of ego is the part of me that is the illusion that I am my experiences, I am my past, I am what I have. Ego is demanding, calculating, competitive, jealous, and hysterical. It is a powerful influence and, when untamed, quickly takes the place of my higher self. My ego does get what it wants, and therefore becomes frustrated, agitated, angry, and resentful. As I sat, facing these intruders this week, almost giving in to my ego, I chose to turn on the television and watch a few Super Soul Sunday episodes found on the Oprah Winfrey Network. Now, I constantly tap into these spiritual leaders that Oprah commonly features. I have a list that are my go to websites to read, videos to find on you tube, and books to dive into and study. I struggle to keep up with daily meditation, but find it is necessary as food. So I stick with it, even when I don't want to. And as I ate my lunch and pressed play on my DVR, I, once again, found myself immersed in reviving my spirit and finding hope. Each interview I watched felt as if it was just for me. Each person was speaking directly to me. These teachings, these ideas are not easy to accept or believe. I must suspend my disbelief and trust and have faith. But, many religions and beliefs require these things, trust and faith. Faith is believing in what does not always have proof. Crucifying the ego may be one way to classify these teachings, but there are many different terms urging the same practice in many different beliefs, faiths, or religions. In Christianity, for example, there is the Resurrection. One must die, in order to have eternal life, much like killing the ego so the eternal, ever present, always loving, always forgiving self can live. Buddhists call it enlightenment. Sufism understands the heart must break to allow this kind of pure love. Purification of the filth must happen and then be replaced with thoughts of purity and divinity. However and whatever it takes to understand this idea, it all means the same thing. Trust in a higher power, trust in a higher self.
So, I let go, once again, and surrendered. And the surrender, the Resurrection, the crucifixion of ego, whatever I want to call it, can happen over and over again. As many times as the ego returns, it can be squashed again and replaced with love and forgiveness. And this love is romantic or sentimental, it is truly seeing myself in others and truly loving all of the parts of myself and my life, including the bad. All are welcome, all are dying to be loved. After I accepted this practice, yet again, and poured my spirit into seeking and forgiving and praying and meditating, the clouds slowly lifted. And yes, they were black and many, this always seems to happen right after surrender or resurrection, but instead of cursing them, I chose to be grateful for them. I chose to see the darkness, as yet another lesson to learn, another moment to gain awareness, another chance to break open, repair, and appreciate the light. I chose to feel the pain, love the pain, and forgive the pain. It is not easy to do, I must trust and believe in what I do not see, but I promise the light always comes through. And as Maya Angelou, one of the greatest minds, likes to say, there may be many clouds, but there is always a rainbow later.
Friday, May 17, 2013
When the Trumpet Sounds
Well, living as a well person, is a lot more difficult than I previously hoped. I knew this, but tried, once again, to pretend it wasn't true. I desperately want to realize my dreams and must accept this comes with the call to soldier on regardless of any pitfalls. I finally settled into my routine yesterday. I struggled with defeat and perseverance, but finally I accomplished one full day without giving in to my irritations. I will return tomorrow with a post I worked on all week. For now, because tomorrow is the Preakness Stakes and because I love horses and because I need the encouragement and strength as well, I will leave you with words that help carry me through darkness. These words are featured in a favorite movie of mine, Secretariat, but more importantly they come from the Book of Job. They remind me I am not to question or understand suffering and fear, I am to charge ahead and, when the trumpet sounds, run my own race.
"Do you give the horse his strength or clothe his neck with a flowing mane? Do you make him leap like a locust, striking terror with his proud snorting? He paws fiercely, rejoicing in his strength, and charges into the fray. He laughs at fear, afraid of nothing; he does not shy away from the sword. The quiver rattles against his side, along with the flashing spear and lance. In frenzied excitement he eats up the ground; he cannot stand still when the trumpet sounds."
Job 39: 19-24
Goodnight and blessings to all of you. See you again tomorrow.
Sarah
Saturday, May 11, 2013
Finding a Bit of Humor
The first day of the new schedule turned out reasonably well. I survived without any major interruptions and only ended wanting more time because I am forever and always running out of time. Such is the life of a paraplegic. Not too shabby for the first day and I promised myself to keep on rolling.
As I prepare to host Mother's Day brunch tomorrow and ponder how quickly the years fly by, I think back to last year and remember a story I love. This story has little to do with mothers, only that it happens on Mother's Day weekend. It's a story about humor and finding it even when it is difficult.
Laughter helps pain tremendously. I find it easy to make jokes about my situation so I don't take it so seriously. I never mean to make others uncomfortable, rather I use it as a good dose of healthy medicine. And honestly, the jokes I can make about not walking are endless. One of my favorites, I slip it in amidst a conversation about the amount of available chairs, is don't worry about me, I bring my own chair. I usually turn a head and see shock followed by laughter. It's just a fun way to make something so heavy seem a bit lighter.
Last year, the day before Mother's Day to be exact, my neighbor and good friend's identical twin brother, Matt, and Matt's boyfriend, Qasim, drove from New York City to surprise Matt and Mark's mom. Mark spent the evening in my kitchen trying to unclog my sink. Matt tasked me with the job of keeping Mark awake so he and Qasim could surprise him as well. The sink backed up and my job to keep Mark awake took on a life of its own. Matt and Qasim arrived shortly after midnight and craved a bit of food. Since Mark and I spent the evening working on a sink, we seconded their wish. We ordered a pizza and sat around the table quickly devouring the cheese and pepperoni delicacy. The one and only rule I require of my guests is to help themselves to a drink. It is partly in place because I want everyone to feel at home in my space, but also because it takes me way too long to fix drinks and pass them out. Wheeling around with drinks isn't the easiest and time efficient task. In a hurried preparation as we awaited the delivery of the pizza, I apparently neglected to share this rule. And as we all were eating and chatting, I noticed Matt did not have a drink.
Instead of asking what drink he would like, I turned to him and said, "I would fix you a drink, but I'm in a wheelchair and can't walk."
Matt knows me well enough to know my statement was a joke. I knew he wouldn't be offended, but I had no idea he would be able to give it back to me so well. There are very few people who return my sarcasm, but Matt not only returned it, he excelled at returning it.
Without hesitation, Matt looked at Qasim and motioned, "Hey Qasim, why don't you wheel Sarah on over to the kitchen so she can fix me a drink?"
It has been a year and I still laugh as hard as I did the day it happened. I think of it randomly and end up in fits of tear filled laughter. Laughter truly is the best medicine.
As I prepare to host Mother's Day brunch tomorrow and ponder how quickly the years fly by, I think back to last year and remember a story I love. This story has little to do with mothers, only that it happens on Mother's Day weekend. It's a story about humor and finding it even when it is difficult.
Laughter helps pain tremendously. I find it easy to make jokes about my situation so I don't take it so seriously. I never mean to make others uncomfortable, rather I use it as a good dose of healthy medicine. And honestly, the jokes I can make about not walking are endless. One of my favorites, I slip it in amidst a conversation about the amount of available chairs, is don't worry about me, I bring my own chair. I usually turn a head and see shock followed by laughter. It's just a fun way to make something so heavy seem a bit lighter.
Last year, the day before Mother's Day to be exact, my neighbor and good friend's identical twin brother, Matt, and Matt's boyfriend, Qasim, drove from New York City to surprise Matt and Mark's mom. Mark spent the evening in my kitchen trying to unclog my sink. Matt tasked me with the job of keeping Mark awake so he and Qasim could surprise him as well. The sink backed up and my job to keep Mark awake took on a life of its own. Matt and Qasim arrived shortly after midnight and craved a bit of food. Since Mark and I spent the evening working on a sink, we seconded their wish. We ordered a pizza and sat around the table quickly devouring the cheese and pepperoni delicacy. The one and only rule I require of my guests is to help themselves to a drink. It is partly in place because I want everyone to feel at home in my space, but also because it takes me way too long to fix drinks and pass them out. Wheeling around with drinks isn't the easiest and time efficient task. In a hurried preparation as we awaited the delivery of the pizza, I apparently neglected to share this rule. And as we all were eating and chatting, I noticed Matt did not have a drink.
Instead of asking what drink he would like, I turned to him and said, "I would fix you a drink, but I'm in a wheelchair and can't walk."
Matt knows me well enough to know my statement was a joke. I knew he wouldn't be offended, but I had no idea he would be able to give it back to me so well. There are very few people who return my sarcasm, but Matt not only returned it, he excelled at returning it.
Without hesitation, Matt looked at Qasim and motioned, "Hey Qasim, why don't you wheel Sarah on over to the kitchen so she can fix me a drink?"
It has been a year and I still laugh as hard as I did the day it happened. I think of it randomly and end up in fits of tear filled laughter. Laughter truly is the best medicine.
Friday, May 10, 2013
A New Way of Life
Paralysis is hard. There really isn't another way to put it. The exhaustion, fear, and quest for independence are stifling. Just when I sit back and take a breath after accomplishing a hard fought task, my body makes a stance, informing me that I am, in fact, not in charge. My body wins every single time. It wins so often, I find myself escaping quite a bit. I set out with a plan and a list for the day only to be interrupted by a two hour session of caring for some unforeseen occurrence brought on by my lack of function. And after I clean up or pick myself up, I am simply too exhausted to continue. Sometimes I can't emotionally handle what just happened so I turn to one of my varied escapes. None of my escapes are unhealthy, just mindless. They usually involve an episode of Real Housewives or Mad Men or Downton Abbey, perusing the internet for celebrity gossip, reading a few chapters of a book, or watching a favorite movie. My healthiest escapes involve walking my dog, cooking, working out, stretching, listening and reading Wayne Dyer, or meditation. Usually after some indulgence, I am over feeling anxious and ready to move forward and conquer another task. However, now that I am feeling well again, I want to stop escaping so much. Part of becoming healthy and progressing is learning to live with the not so comfortable parts of my life and learning not to allow them to throw me off course. I need to sit with them as they come and move past them when they are over. Sometimes a little anxiety is healthy because it teaches me to cope.
The season opener of this season of Mad Men ended with the line, people will do anything to relieve anxiety. It's true. Anxiety is uncomfortable. Since this line continues to stick with me, I thought about it in many, different ways and came to the conclusion that yes, anxiety cripples me more than I am already, but sometimes it fuels me to change. So, instead of quickly relieving it, I decided to make a few changes. Because I still must heal two wounds left from my awful infection, that last and final step of my recovery, I need to pressure relief most of the time. This requires a lot of time in bed. I try to use this time wisely, refusing to give in to my escapes. Today I chose to make a new 'well schedule.' I filled it with positive escapes that propel me instead of hold me back. Rather than allow a particular instance to put me back ten paces, as I like to say, I am vowing to deal with it and move on and stick to my 'well schedule.' This will take a great deal of self discipline, but I am ready for it. I added an extra block of meditation because silence is key and never ever overrated. I am also determined to publish more on this blog. I want to document my progress and see if there is actually progress happening. For so long, I've felt robbed of a regular life, but now I feel more determined than ever to take back what I feel I've lost. If something happens to throw me off course, I decided to allow it to happen, process it, and choose to move forward instead of escaping from it. I know I won't win every time, but I am willing to try. And I do feel some escape is healthy and I worked some in to my in bed resting, pressure relief schedule. Basically, scheduling my relief instead of taking it whenever and wherever I need it. I am writing all of this because I need to be accountable. I need to visit this blog as often as possible to record my feelings and progress so I don't become defeated. All of you wonderful readers and supporters are my witnesses. I will check in as often as possible and share as much as I can. I may not always want to write about schedules, in fact, I probably will write about them the least, but I want to write more to keep myself sane and on track. I want to get as much out of life as I can, when I can, and how I can. Especially now that I am able. I am ready to win this race with myself, even if I am the tortoise, especially because I am the tortoise. I work so hard not to succumb to the downfalls of this life in a wheelchair and I want to try harder than ever to keep going. It's so hard to have life changes come and go and be left with the aftermath, but putting the pieces back together, painting a masterpiece with the splatters and stains, well that is so rewarding.
Please excuse the hodge-podge of a post. I just needed to write this in order to start my new well life. Now, I'm off to finish grooming and bathing my dog, Belle. She loves this new life. Ha!
See you tomorrow.
*I am in no way commenting on anxiety disorders, panic attacks brought on by anxiety, or depression anxiety. I've experienced all of the above and it takes a lot more than simple escapes to alleviate or even curb these anxieties. I am only writing about my general, day to day anxiety.
The season opener of this season of Mad Men ended with the line, people will do anything to relieve anxiety. It's true. Anxiety is uncomfortable. Since this line continues to stick with me, I thought about it in many, different ways and came to the conclusion that yes, anxiety cripples me more than I am already, but sometimes it fuels me to change. So, instead of quickly relieving it, I decided to make a few changes. Because I still must heal two wounds left from my awful infection, that last and final step of my recovery, I need to pressure relief most of the time. This requires a lot of time in bed. I try to use this time wisely, refusing to give in to my escapes. Today I chose to make a new 'well schedule.' I filled it with positive escapes that propel me instead of hold me back. Rather than allow a particular instance to put me back ten paces, as I like to say, I am vowing to deal with it and move on and stick to my 'well schedule.' This will take a great deal of self discipline, but I am ready for it. I added an extra block of meditation because silence is key and never ever overrated. I am also determined to publish more on this blog. I want to document my progress and see if there is actually progress happening. For so long, I've felt robbed of a regular life, but now I feel more determined than ever to take back what I feel I've lost. If something happens to throw me off course, I decided to allow it to happen, process it, and choose to move forward instead of escaping from it. I know I won't win every time, but I am willing to try. And I do feel some escape is healthy and I worked some in to my in bed resting, pressure relief schedule. Basically, scheduling my relief instead of taking it whenever and wherever I need it. I am writing all of this because I need to be accountable. I need to visit this blog as often as possible to record my feelings and progress so I don't become defeated. All of you wonderful readers and supporters are my witnesses. I will check in as often as possible and share as much as I can. I may not always want to write about schedules, in fact, I probably will write about them the least, but I want to write more to keep myself sane and on track. I want to get as much out of life as I can, when I can, and how I can. Especially now that I am able. I am ready to win this race with myself, even if I am the tortoise, especially because I am the tortoise. I work so hard not to succumb to the downfalls of this life in a wheelchair and I want to try harder than ever to keep going. It's so hard to have life changes come and go and be left with the aftermath, but putting the pieces back together, painting a masterpiece with the splatters and stains, well that is so rewarding.
Please excuse the hodge-podge of a post. I just needed to write this in order to start my new well life. Now, I'm off to finish grooming and bathing my dog, Belle. She loves this new life. Ha!
See you tomorrow.
*I am in no way commenting on anxiety disorders, panic attacks brought on by anxiety, or depression anxiety. I've experienced all of the above and it takes a lot more than simple escapes to alleviate or even curb these anxieties. I am only writing about my general, day to day anxiety.
Friday, May 3, 2013
I am Well
I allowed my wellness to sink in this past week. Every morning I awoke with the thought, I am well. For the first time in thirteen years, I am not newly paralyzed and I am not ill. As this realization took over, it dawned on me, I don't know how to be well. I can do sick. I know how to navigate life with a blood infection, bone infection, and seething wounds. Taking pills, administering intravenous drugs, checking temperatures, wearing sweat pants, vomiting, grasping for hope, visiting the doctor constantly, and all of the daily pleasures that tag along with ill - these are my fortes. I know how to fight for breath and cling to life, living life, well, that is another story. I guess I can safely, with much embarrassment, say I am scared to live as a well person. I fought to live and now fear it.
For twelve years my life was a battle and I was a warrior. My role was to combat illness and remain strong for the ensuing hours each day brought. I slept, knowing the next morning I would wake up and still be sick and still need to care for myself. My focus was my infection and healing the infection. I built my life around sickness. The struggles and difficulties in my life became commonplace and I rose to the challenge and methodically crushed them, one by one. I clawed my way through a dozen doctors until I found one who diagnosed my infection correctly. I bravely conquered several, more than I can count, rounds of blood work testing, PICC line insertion, hyperbaric oxygen treatments, and emergency room visits. I immersed myself in medical language and became an expert. Nutrition and forcing food down my throat were struggles, after vomiting for years, but I wrestled them and ended as the victor. This is the life I know. These are my skills.
Today, I decided I need to rip off the band aid and start living as a well person. I need to stop anticipating the return of my previous life and start accepting the dream that is coming true right before my very eyes. There is comfort in not returning to my everyday life. If I remain diligent and steadfast and minimize risk, I mistakenly think I can control the outcome of the rest of my days on earth. It's as if staying inside is safer than venturing out, so why go out. But, I don't want to be this person. I work too hard at independence and mastering the hard things. Necessity spurs independence and I gladly accept the dare. I found purpose and meaning in the lessons learned while living such a turbulent life. I wish I were shouting from the mountain tops and jumping for joy, but I am not, I am too timid to take the first step. I worry the first moment I take that step, I will fall. I worry my dreams and hopes will, once again, shatter and disintegrate into the wind. And the biggest and most aching question of all, If I let go and start living again, will it be far more challenging than living as an ill person?
I can't answer or calm any of these apprehensions. I know I can't control life anymore than I can control death. Life as a person with paralysis is scary and frighteningly uneasy. It just is. There isn't much that calms the stirring waters of this life. The tides come in and they go out, taking with them what they choose and leaving behind broken rubble. But, I also know that sometimes, among the wreckage washed upon the shore, there are hidden treasures longing to be discovered. I put my insecurities aside, I focus on what is magical, what is filled with light, and venture forward hoping to find more treasures than rubble. I found so many gifts in my darkest days, I feel there can not be any left for me. However, I must remember this is not how life works. There isn't a tabulation of suffering or blessings. One is not more deserved than the other. My only option is to soldier on with a heart of gratitude and the will to spread love, kindness, and hope. I may carry a backpack of fear along the way, but it does not have to weigh me down - I can choose to put it down whenever I so desire and run free and dance to the music of my soul.
The next chapter begins tomorrow. I take my first step as a well person. I return to just Sarah sitting down. I feared getting to know this person the first time around and now I can't wait to meet her again. I'm guessing I already know her very well. She's been here all along just waiting for me to uncover the magic and beauty that comes with living life...well or sick, difficult or not. The journey isn't easy and I don't have pretend it is, but I do have to believe magic and beauty are always available, I just have to be willing to spot them and most of all, willing to live them.
For twelve years my life was a battle and I was a warrior. My role was to combat illness and remain strong for the ensuing hours each day brought. I slept, knowing the next morning I would wake up and still be sick and still need to care for myself. My focus was my infection and healing the infection. I built my life around sickness. The struggles and difficulties in my life became commonplace and I rose to the challenge and methodically crushed them, one by one. I clawed my way through a dozen doctors until I found one who diagnosed my infection correctly. I bravely conquered several, more than I can count, rounds of blood work testing, PICC line insertion, hyperbaric oxygen treatments, and emergency room visits. I immersed myself in medical language and became an expert. Nutrition and forcing food down my throat were struggles, after vomiting for years, but I wrestled them and ended as the victor. This is the life I know. These are my skills.
Today, I decided I need to rip off the band aid and start living as a well person. I need to stop anticipating the return of my previous life and start accepting the dream that is coming true right before my very eyes. There is comfort in not returning to my everyday life. If I remain diligent and steadfast and minimize risk, I mistakenly think I can control the outcome of the rest of my days on earth. It's as if staying inside is safer than venturing out, so why go out. But, I don't want to be this person. I work too hard at independence and mastering the hard things. Necessity spurs independence and I gladly accept the dare. I found purpose and meaning in the lessons learned while living such a turbulent life. I wish I were shouting from the mountain tops and jumping for joy, but I am not, I am too timid to take the first step. I worry the first moment I take that step, I will fall. I worry my dreams and hopes will, once again, shatter and disintegrate into the wind. And the biggest and most aching question of all, If I let go and start living again, will it be far more challenging than living as an ill person?
I can't answer or calm any of these apprehensions. I know I can't control life anymore than I can control death. Life as a person with paralysis is scary and frighteningly uneasy. It just is. There isn't much that calms the stirring waters of this life. The tides come in and they go out, taking with them what they choose and leaving behind broken rubble. But, I also know that sometimes, among the wreckage washed upon the shore, there are hidden treasures longing to be discovered. I put my insecurities aside, I focus on what is magical, what is filled with light, and venture forward hoping to find more treasures than rubble. I found so many gifts in my darkest days, I feel there can not be any left for me. However, I must remember this is not how life works. There isn't a tabulation of suffering or blessings. One is not more deserved than the other. My only option is to soldier on with a heart of gratitude and the will to spread love, kindness, and hope. I may carry a backpack of fear along the way, but it does not have to weigh me down - I can choose to put it down whenever I so desire and run free and dance to the music of my soul.
The next chapter begins tomorrow. I take my first step as a well person. I return to just Sarah sitting down. I feared getting to know this person the first time around and now I can't wait to meet her again. I'm guessing I already know her very well. She's been here all along just waiting for me to uncover the magic and beauty that comes with living life...well or sick, difficult or not. The journey isn't easy and I don't have pretend it is, but I do have to believe magic and beauty are always available, I just have to be willing to spot them and most of all, willing to live them.
Saturday, April 27, 2013
Dandelion Wishes
I lost my innocence the day I realized life changes in an instant. At first, I felt a deep sense of sadness. I felt entirely too young to face such a truth. I felt dreams, and hopes, and wishes weren't possible because they could be taken so fast and without mercy. But, after time went on and after I fully accepted the idea, I discovered this knowledge is actually quite a gift and it certainly doesn't destroy dreams or hope, it only makes them grow stronger.
Gratitude. Joy. Love. Forgiveness. I wasn't quite sure where to find these things before my accident. I searched everywhere and everything. I tried new personalities, new outfits, new locations, new jobs, and while I found them for a bit, they always seemed fleeting and ready to escape. The day I learned I was paralyzed I assumed this feeling of joy was lost forever. I struggled to grasp a small piece of it, but quickly felt it slide between my fingers and fall to the floor. As my illness progressively grew and took over my body, gratitude was a rarity and hidden in the depths of my pain. I couldn't even begin to imagine what life would feel like with this thing called love, dictating moments and circulating through my body once again. Forgiveness wasn't something I practiced because too much anger and resentment prevailed.
The loss of basic function is fierce. I learned and lived the true definitions of isolation, burden, and cruelty. A life sentence seemed quickly thrust upon me. Over time, independence won in certain areas only to be taken away, yet again. And all while my body ebbed and flowed, the one thing that remained constant and never changed was my spirit. It took massive hits, the flame would almost go out, but it never fully extinguished. On some of my darkest days, I almost let go many times, but in the end, after a good cry, after an emergency call to a friend, or after a yelling session into the air, at whom I really don't know, I always ended up holding tightly to any chance at life. And that little bit that was left was forced to exercise. It soon acquired practices of gratitude, moments of joy and love, and I demanded it find forgiveness.
Gratitude. Joy. Love. Forgiveness. These are my mantras, the tour guides of my thoughts. Because I know everything can and will change at any second, I fervently practice these principles. Gratitude is powerful. I challenge myself to catch it when it is hardest to find and to notice it when it is easy to see. When something with my body happens that is so overwhelming and so demeaning to deal with, I think, at least this is better than the last time this happened or at least I am at home and not at a football game. When my dog barks incessantly or tears up paper and scatters it all over the living room, I think, at least she is here to bark and tear up paper. And during moments of extreme illness and while I continue to heal, I think, at least I am better than I was yesterday. And before I fall asleep each night, I think of at least five things I am grateful for that day. Sometimes it's an effort to come up with them and sometimes I can't stop thinking of new and different additions to my list. And when gratitude permeates my life, joy is never far behind. Joy creeps through doorways and opens windows and flies in like giant gusts of wind. And when I finally pause long enough to notice and feel these gusts I learn to love and forgive myself. I drink in the love for my body, no matter how broken, and I forgive myself for not accepting it. I acknowledge its fragility and forgive my carelessness. I love its uniqueness and ability to mold itself and learn new methods and forgive my determination not to give into this ability to change. And the most wonderful part about extending these moments of grace to myself, is I finally have something to give others. I need to feel gratitude to extend it to others. I need to be joy to be joyful for others. I need to love myself in order to have any love to give. And I must forgive myself, in order to offer forgiveness.
This past week I learned my chronic bone infection no longer exists. It just left my body. My doctors ran many tests and discussed the results several times and several different ways and the infection is just gone. And this week, this wonderful news found itself juxtaposed with a week filled with paralysis troubles. I battled my independence in a lot of areas. My body was just out of whack, as it is so many days. Only now, instead of loathing my condition, I know, as fact, everything changes in an instant. I know the good comes with the bad and moments pass. I know on Monday I might combat the loss of basic human functions, but I also know on Friday I may experience the greatest of human emotions.
I ended the week at the park with Ashlea and her kids. We played waitress with her daughter and ordered chocolate milkshakes and hot dogs delivered to us in the form of sticks and grass. We watched her toddler son slide down the twisty, tube slide head first and jump right back up and do it again. We laughed hysterically when her daughter tried to make a wish on a dandelion and when its feathery petals refused to blow off its stubborn stem, she just ripped the top of it off and said, "There, now that wish will come true." We ventured back to the place I call home, the place eight years, almost to the day, Ashlea helped me move into as I grasped to any shred of life I had left. She and her then boyfriend, now husband, carried box after box and every piece of furniture. And later that evening, after all of the other help left, we gathered in my living room, surrounded by boxes, eating cheeseburgers from the bar down the street and played Super Mario Brothers on my very old, and vintage Nintendo I've had since I was twelve. And this past Friday, we gathered around my kitchen table, ate our grown up lunch of healthy avocado, cucumber, and tomato salad, and watched while their children, the children that didn't exist all those years ago, played in the same living room and ate peanut butter sandwiches.
Gratitude, joy, love, and forgiveness. It takes all of these things to awaken to the blessing of a moment like this. And the fight to stay alive and the work it takes to have every moment and everyday is more than worth it when I have a week like this week....even with the bad stuff smashed in between. It all can change in an instant and I am no longer afraid to allow it to change, because I never know what is right around the corner. Sure, the initial alteration might sting a bit or quite a lot, but as time goes on and wounds heal, life just seems to get richer, lovelier, and so full of joy. I am ever so thankful to know this truth. And when I am frustrated because a wish just won't come true, well, I'll rip the head off of that dandelion and make it come true.
Gratitude. Joy. Love. Forgiveness. I wasn't quite sure where to find these things before my accident. I searched everywhere and everything. I tried new personalities, new outfits, new locations, new jobs, and while I found them for a bit, they always seemed fleeting and ready to escape. The day I learned I was paralyzed I assumed this feeling of joy was lost forever. I struggled to grasp a small piece of it, but quickly felt it slide between my fingers and fall to the floor. As my illness progressively grew and took over my body, gratitude was a rarity and hidden in the depths of my pain. I couldn't even begin to imagine what life would feel like with this thing called love, dictating moments and circulating through my body once again. Forgiveness wasn't something I practiced because too much anger and resentment prevailed.
The loss of basic function is fierce. I learned and lived the true definitions of isolation, burden, and cruelty. A life sentence seemed quickly thrust upon me. Over time, independence won in certain areas only to be taken away, yet again. And all while my body ebbed and flowed, the one thing that remained constant and never changed was my spirit. It took massive hits, the flame would almost go out, but it never fully extinguished. On some of my darkest days, I almost let go many times, but in the end, after a good cry, after an emergency call to a friend, or after a yelling session into the air, at whom I really don't know, I always ended up holding tightly to any chance at life. And that little bit that was left was forced to exercise. It soon acquired practices of gratitude, moments of joy and love, and I demanded it find forgiveness.
Gratitude. Joy. Love. Forgiveness. These are my mantras, the tour guides of my thoughts. Because I know everything can and will change at any second, I fervently practice these principles. Gratitude is powerful. I challenge myself to catch it when it is hardest to find and to notice it when it is easy to see. When something with my body happens that is so overwhelming and so demeaning to deal with, I think, at least this is better than the last time this happened or at least I am at home and not at a football game. When my dog barks incessantly or tears up paper and scatters it all over the living room, I think, at least she is here to bark and tear up paper. And during moments of extreme illness and while I continue to heal, I think, at least I am better than I was yesterday. And before I fall asleep each night, I think of at least five things I am grateful for that day. Sometimes it's an effort to come up with them and sometimes I can't stop thinking of new and different additions to my list. And when gratitude permeates my life, joy is never far behind. Joy creeps through doorways and opens windows and flies in like giant gusts of wind. And when I finally pause long enough to notice and feel these gusts I learn to love and forgive myself. I drink in the love for my body, no matter how broken, and I forgive myself for not accepting it. I acknowledge its fragility and forgive my carelessness. I love its uniqueness and ability to mold itself and learn new methods and forgive my determination not to give into this ability to change. And the most wonderful part about extending these moments of grace to myself, is I finally have something to give others. I need to feel gratitude to extend it to others. I need to be joy to be joyful for others. I need to love myself in order to have any love to give. And I must forgive myself, in order to offer forgiveness.
This past week I learned my chronic bone infection no longer exists. It just left my body. My doctors ran many tests and discussed the results several times and several different ways and the infection is just gone. And this week, this wonderful news found itself juxtaposed with a week filled with paralysis troubles. I battled my independence in a lot of areas. My body was just out of whack, as it is so many days. Only now, instead of loathing my condition, I know, as fact, everything changes in an instant. I know the good comes with the bad and moments pass. I know on Monday I might combat the loss of basic human functions, but I also know on Friday I may experience the greatest of human emotions.
I ended the week at the park with Ashlea and her kids. We played waitress with her daughter and ordered chocolate milkshakes and hot dogs delivered to us in the form of sticks and grass. We watched her toddler son slide down the twisty, tube slide head first and jump right back up and do it again. We laughed hysterically when her daughter tried to make a wish on a dandelion and when its feathery petals refused to blow off its stubborn stem, she just ripped the top of it off and said, "There, now that wish will come true." We ventured back to the place I call home, the place eight years, almost to the day, Ashlea helped me move into as I grasped to any shred of life I had left. She and her then boyfriend, now husband, carried box after box and every piece of furniture. And later that evening, after all of the other help left, we gathered in my living room, surrounded by boxes, eating cheeseburgers from the bar down the street and played Super Mario Brothers on my very old, and vintage Nintendo I've had since I was twelve. And this past Friday, we gathered around my kitchen table, ate our grown up lunch of healthy avocado, cucumber, and tomato salad, and watched while their children, the children that didn't exist all those years ago, played in the same living room and ate peanut butter sandwiches.
Gratitude, joy, love, and forgiveness. It takes all of these things to awaken to the blessing of a moment like this. And the fight to stay alive and the work it takes to have every moment and everyday is more than worth it when I have a week like this week....even with the bad stuff smashed in between. It all can change in an instant and I am no longer afraid to allow it to change, because I never know what is right around the corner. Sure, the initial alteration might sting a bit or quite a lot, but as time goes on and wounds heal, life just seems to get richer, lovelier, and so full of joy. I am ever so thankful to know this truth. And when I am frustrated because a wish just won't come true, well, I'll rip the head off of that dandelion and make it come true.
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