Thursday, September 27, 2012


Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one getting burned.   Buddha
Rehabilitation is supposed to be a time of healing, of learning a new way of life. I wish I could say my experience was all sunshine and rainbows, but it was not, not even close. My denial was already thick, but soon it would become cemented, a permanent way of life. The rage and anger and frustration overpowered until almost becoming fatal. I shut down so immensely during rehabilitation, so deeply, returning from this numb state seemed painful and entirely too maddening. It was far easier to remain detached than to relive my darkness and my sadness. When I arrived at the rehab hospital, I could feel the ambulance pulling up the long hill and turning into the entrance. I knew this road and this entrance, I used to dance for the patients at this hospital. I felt my eyes sting and my lips quiver, knowing, just a few years ago, I was running through these same sliding doors ready to perform. And now, I would now enter, flat on my back and on a stretcher. Orderlies and EMTs quickly pushed my stretcher through the hallways, past the nurses station, and eventually entered a large, lonely room. As we whizzed through the hallways, I peeked in the rooms to catch a glimpse of fellow patients. Everyone was in bed and watching television. I heard breathing machines and the Golden Girls chattering about cheesecake in the background. Several nurses and a few orderlies lifted me into my new hospital bed. I looked around and saw the same white, grey, and mauve color scheme. I have no idea why hospitals choose this color combination, it is really nauseating. I was surrounded by blood pressure machines and monitors, something I was quickly becoming accustomed to. Nurses started asking questions and pulling back blankets and sheets and checking my legs and arms and IVs and anything and everything they could check. I continued to smile. Inside, I was hysterically crying and yelling. I was screaming shut up, shut up, all of you just shut up. I was pounding the bed and sitting up and ripping off my blankets and IVs, pulling the gown over my backside and saying peace out, catching a cab and heading home. I was trapped. A feeling I was beginning to loathe. I knew I was still inside, I knew just a few short weeks ago I was buzzing around and asking questions without thinking how I was affecting someone else. I too was walking and taking every step and every motion of my job for granted. But, no one seemed to notice this or care. I was now broken and damaged and easy to ignore. I expected so much compassion from the doctors and nurses at this hospital. The hospital I just left was filled with understanding and loving doctors, nurses, and staff. I thought rehab would be overflowing with fighting angels rooting me on and encouraging me the entire time. My new doctor entered the room and she was aloof and cold. She shook my hand and started her examination immediately. Abruptly, she rolled me on my side and started performing what I would equate to torture. She decided my chest tube sight was too much and the surgeon who bandaged it was typical in his over-zealous bandaging. I am now an over-zealous is wise and helps prevent infection. The new doctor dug her ice cold acrylic nails into my side and lifted the edge of the sealed tape. She ripped the tape as if a human with nerves and skin was not attached to it. And she didn't tear in tiny little sections, no she grabbed large chunks at a time and tore vigorously. I gripped the handrail so hard my hand was bruised. Hot tears streamed down my cheeks and I clenched my jaw in anger, pain and humiliation. Her response to my tears was that it wasn't that bad. She didn't care that it hurt me, I was a patient now, a prisoner. I needed assistance with almost everything. My new life was becoming degrading. She left and a new nurse came in and helped me prepare for bed. I didn't want to talk to anyone. She shut the huge, wooden door and I turned my head and wept. I looked out the window and felt the wicked and impending loss of freedom. I couldn't even get out of the bed alone, much less down the sidewalk and into a cab. Morning came and so did a new and demanding therapy schedule. I started gaining strength and shreds of confidence and meeting therapists and nurses who actually cared and empathized. I still felt defeated, but it was defeat speckled with tiny bits of hope. Some moments were awful and some were incredible. I was beginning to feel less and less trapped. As a sign that I was returning, I was constantly begging for a shower. I was not able to take one yet for some reason. Sponge baths were my only option. The whole process makes me dizzy and want to faint if I think about it. I hated those baths in a plastic tub so incredibly much. One evening, two nurses came into my room. Again, I should have listened to my gut who was telling me how odd it was for nurses to come in at ten o'clock in the evening. I am still honing this skill of listening to my gut, but I am a far cry from this day, I promise. Nevertheless, I ignored my butterflies and entertained their question and idea. They entered wheeling a large, rubber stretcher. The sides were able to come up, creating a bathtub on wheels. The one female and one male nurse asked me if I wanted to go into the shower room using the stretcher. The female seemed irritated and flustered. I jumped at the idea and quickly gave a definitive answer. I actually remember feeling lucky. Feeling like things were starting to turn around, turn a corner for me. I requested all of my special smelling body washes and soap and shampoo. This was going to be a great shower. But, as I was showering and the nurses were helping me, I felt incredibly uncomfortable and uneasy. I was so grateful for the shower and encouraged by their generosity I ended up writing the feeling off as modesty and an inability to one more time accept and deal with the hard things about my new life. I needed help bathing for now and just thought it was something I needed to accept. It wouldn't be like this forever, but I just had to get through it. Two nights later the same male nurse entered the room with the same bathing stretcher. But, this time, he was alone. Yet another red flag I ignored. I stupidly jumped at the chance for another shower. Only this time, it was worse. I knew something was wrong. I knew he was not helping me for the right reasons and was taking advantage of the situation, I knew it, I could see it, and I was sickened. I asked him to step away, finished my shower and returned to the bed, requesting a female nurse to help me with the rest of the process. I fell asleep crying and shaking with fear and humiliation, yet again. Two nights later the same male nurse came into my room and this time I told him to leave. He did. In fact, I never saw him again. And I sent the memory right out the door with him. I did not want to think about it again. I carried a part of it deep, down inside and it eventually grew and grew. Years later, as I was lying sick and alone in my bed and crying and screaming with the same feelings of confinement, wondering why I was so angry and so depressed, I remembered these moments, these incredibly dark stains on my journey to a new life. I thought of all of the dark stains and awakened to the idea they were the obstacles to my healing. Sure the infection was aggressively doing its part, but anger and resentment were doing their fair share. Releasing these moments and forgiving these people were necessary to my healing process. Understanding and using the courage and the strength to fight through the wretched stains is what matters, not the stain. Yes, people failed me. Many professionals failed me and I allowed the hurt and the shame to fester and smolder, until they were finally taking my life. I expected and longed to be rescued and only assumed in a matter of time, that  doctor or that nurse or that therapist would come along and make all of the pain and hurt go away. She would take charge of my life and fix all of the wrongs and clean up all of the messes. I waited and waited and became more and more enraged as I realized this person, this figment of my imagination, this person I saw in the movies that took the patient under her wings and healed her was never going to show up. She wasn't showing up and I assumed it was because she didn't exist. Twelve years later, I know why this figment, this person, this savior was so out of reach while also so close and so tangible. I know why I could see her in my mind, rescuing me from the cruel doctors and finding kind and caring doctors and nurses who work late hours on my behalf. I know why I could see her telling that hideous, old, sad man to run and hide because she was going to yell and scream and tell everyone to stay away from him. I know why I could see her lifting my body and propelling my wheelchair with her sinewy arms and not this weak and broken and sick body. And I know why I could see her stand up and not take no or a misdiagnosis for an answer. I know because she is me. I was there all along. I took the fiery ball of anger and doused it with tears of forgiveness, healing, and compassion and finally saw that I am able and strong and tough and brave. I am the rescuer, I am the one I was waiting for all along. Rehabilitation taught me how to physically deal with the changes to my body. It did not teach me how to find myself amongst the ruins. I did that. I picked up the pieces one at a time and started to form a new and better life. I truly rehabilitated myself and discovered a life filled with compassion, understanding, and love and enough of each of them to know these people, these people hired to help me, knew not what they did, they were acting out of their own anger, their own personal demons. Anger is malicious and relentless. It causes wars, rape, abuse, humiliation, and scars lasting a lifetime. If we fail to find that part of us that loves and forgives, we too fall prey to anger's wrath. I ask God, or whomever you may call it, to show these people who stained my journey their own power, their own force residing deep down inside and longing to be awakened. The force that begs to extend love and urges the desire to begin to change lives for the good. I plead for each one of them to find it. It is all I can do. It is what we are called and asked to do. It is what we are required to extend to all souls, all living creatures, it is why we are here, to love and  to forgive everyone...everyone. Understanding this is true healing and rehabilitation.

Tuesday, September 25, 2012

Tomato Soup

I'm quickly stopping by to post the tomato soup recipe. I will be back tomorrow with a regular post. I hope you have a wonderful evening and enjoy the soup!

Cream of Fresh Tomato Soup (Ina Garten)
*I made it without the cream one time and with the cream another time. Both were equally delicious.
Serves 5 or 6

3 tablespoons good olive oil
1 1/2 cups chopped red onions (2 onions)
2 carrots, unpeeled and chopped (I peeled my carrots because I did not use a food mill)
1 tablespoon minced garlic (3 cloves)
4 pounds vine-ripened tomatoes, coarsely chopped (5 large)
1 1/2 teaspoons sugar
1 tablespoon tomato paste
1/4 cup packed chopped fresh basil leaves
3 cups chicken stock
1 tablespoon kosher salt
2 teaspoons freshly ground black pepper
3/4 cup heavy cream
   Julienned fresh basil leaves, for garnish
   Parmesan Toasts (recipe follows) or croutons, for garnish

Heat the olive oil in a large, heavy-bottomed pot over medium-low heat. Add the onions and carrots and saute for about 10 minutes, until very tender. Add the garlic and cook for 1 minute. Add the tomatoes, sugar, tomato paste, basil, chicken stock, salt, and pepper and stir well. Bring the soup to a boil, lower the heat, and simmer, uncovered, for 30 to 40 minutes, until the tomatoes are very tender.

Add the cream to the soup. Ina recommends processing it through a food mill into a bowl and discarding only the pulp that is left. I used a food processor and it worked really well. I just scooped about 12 oz batches into the food processor at a time. I ran into a lady at Whole Foods who used an immersion blender and said it also turned out very well. However it is processed, return the soup to the pot and reheat over low heat just until hot and serve with julienned basil leaves and/or Parmesan Toasts and a sprinkling of kosher or sea salt. Freeze any leftovers and to reheat, allow the soup to thaw and heat until hot in a saucepan. I also have not used the basil as a garnish yet.

Parmesan Toasts
Makes at least 20

1 French baguette
   Olive Oil
   Kosher salt and freshly ground black pepper
   Freshly grated Parmesan cheese

Preheat the over to 400 degrees.

Slice the baguette diagonally into 1/4-inch-thick slices. Makes as many slices as you would like to serve with the soup.

Place the slices on a sheet pan lined with parchment paper. Brush with olive oil and sprinkle with salt and pepper. Sprinkle a thick layer of grated Parmesan on the toasts and bake for 5 to 10 minutes, until the toasts are lightly browned. Cool to room temperature. This is a great way to use up leftover French bread. The toasts can be made a few hours in advance and can be re crisped for a few minutes in a warm oven.

Wednesday, September 19, 2012

The Hens

First of all...thank you. Thank you for all of your understanding and thoughtful words. Each one of them helped tremendously. I was hesitant to share such an honest moment, but thought this is what this story is all about..honesty. And some days, even though the problems are so small now, it seems like I am drowning. It always goes away now if I listen to it and recognize it. It is okay to be sad sometimes. Each one of your comments chipped away at the sadness and by yesterday afternoon, the light came back and so did my strength and determination. I spent the day resting and doing things I loved, like making homemade tomato soup and Ina Garten's Ultimate Grilled Cheese. Since the weather is finally cooler and fall is creeping around the corner I decided to take full advantage and make soup and share it with Mark, the Will to my Grace. Resting, comfort food, and good friends always seem to do the trick. Everything will still be messy and seem overwhelming at times, but I expect it now because that is just the way it is...for everyone. Thank you for reminding me of this.
Tomato soup and grilled cheese. If anyone wants the recipe please leave it in the comments and I will include it next time. I assume everyone has a favorite tomato soup recipe already.

There has been an overwhelming silence the last several weeks and I couldn't figure out why, until yesterday. I walked the dog and then came home determined to have a better day. After returning, I dove right in and started planning something for dinner that could simmer away all afternoon on the stove, I lit candles, folded laundry, and enjoyed being home. As I was cooking and hearing the music in the background coming from my Ipod, I realized I was doing something I learned, something I learned from a dear, dear friend. I was making my home a place of peace and comfort. I learned this from Eileen and her family, the Johnstons. And the silence, it is because the girls and Kevin are gone. Away at school and off to new jobs. I used to babysit for the four Johnston kids before my accident. The girls were Irish Dancers and we quickly bonded and formed what would turn out to be some of the most loving and fulfilling friendships in my life. Eileen loves being at home and makes an art of making it special and welcoming and smell so good. She believes in the simple things in life and her influence on my life has been profound. She and her husband, Ron, deserve a story all of their own. They are mentors, friends, guiding lights, and two of the best people I know. And it isn't a surprise they raised four wonderful children.

I love all of the kids I ever cared for; each one of them holds a special place in my heart. I remember all of them and think of each of them from time to time. But, there are four kids, four kids who never left my side and still remain firmly planted. Everyone was so kind immediately following my accident. Each person did what he or she could do to help the situation. And I am grateful for each and every act of kindness and generosity. I remember them all. As time went on, certain people took over certain roles. I had emotional, spiritual, financial, and all kinds of other support from many different sources including my loving family and amazing friends. The extent people will go to to help is astounding and humbling. There was one favor, one gesture in particular, it wasn't grand or loud or extraordinary. In fact, it was quite ordinary and quite normal. Eileen Johnston, the mother of the four kids, arranged for her hair stylist to come to the hospital and cut and style my hair while I sat in my wheelchair next to my hospital bed. She washed my hair in the sink and gave me a haircut. While I was sitting in the chair and laughing and talking with Eileen, my mom, the stylist and the nurses, I remember suddenly feeling normal, feeling like myself. I was doing something I had done a number of times before my accident and it felt exactly the same way it did prior to my injury, the wheelchair and hospital room didn't matter. When women gather and a hair stylist is present, well the room becomes a salon and the gossip and chatter fill the room drowning out the blood pressure machine and adding color and life to the white, sterile walls. In that forty minutes it took her to cut my hair, I felt like myself again for the first time. Eileen and her kids continued to visit and continued to bring life and joy to the bleak room.

When I finally moved to a transitional living hospital and could leave, Eileen did what she does best, she picked me up and took me to her home for dinner. I was nervous how it would feel to be carried into a home I used to zip in and out of carrying bags, art projects, and groceries. I wondered how I would feel sitting down and not helping the way I did before. We arrived at her house and Eileen and Ron carried me inside, lifting my wheelchair one step at a time. This was it, this was the moment. Kelly came running first. When I say these kids are rays of sunshine, I actually think I mean they are the sun. The bright, shiny sun, with tons and tons of rays. Their hearts are triple the size of their smiles and their compliments and presence never end. They ask a million interesting questions and can have conversations for hours. Kelly is the oldest girl. She was about eleven at the time of my accident. She threw her arms around me, flashed her bright and ever engaging smile and immediately grabbed the back of my chair and pushed me into the kitchen where her sisters and brother were gathered. Each one ran up and gave me the same, loving, and extremely welcoming hug. Kelly stood right next to me and leaned back on the kitchen table while we were all talking and started playing with my hair. She always used to do this and just started doing it as if nothing had changed. My wheelchair and accident didn't matter to her, we were doing what we always did, we were sitting around the kitchen island cackling like hens and Kelly was fixing my hair as if it was any other day. It never dawned on me how important normalcy was, it felt good and I needed it. This was the start of our ever growing common love of all things fashion. Kelly has tried on more clothes for me than I can count. She sits down in them so I can see how they will look sitting. She never tires and her patience with me never grows thin. She sticks it out until we find the perfect thing. Whenever I move, Kelly is here unloading boxes with a smile on her face. Kelly has the self discipline and determination of an Olympian and I call her when I feel like giving up and giving in to frustration. When Kelly sets a goal she achieves it. I find myself calling her for advice because it is wise beyond her years. Her heart is always expanding, she roots for and protects the little guy...she makes me want to be a better person.

The years that followed were difficult to say the least, but without fail and bringing along their glass is always half full zest for life, the Johnstons showed up and made it more bearable. And never once, not once, have they ever seen anything but me. My wheelchair is just a chair I sit in to them. Bridget, the youngest, was only in the first grade when my accident happened. One night when I was over at their house watching a movie, I asked Bridget to get me a drink. She replied with an I'm the youngest of four grin on her face, "No, get it yourself." Her mom was livid and sent her straight to her room. Eileen couldn't believe she said it. I didn't take offense, I figured she was just being silly. A few minutes later, Eileen went upstairs and talked to Bridget and had her come down to apologize. As she apologized she explained, "I'm sorry I said get it yourself Sarah, I was just teasing, and well, I really just forgot you were paralyzed." I hugged her and thanked her. That was the best thing anyone had said to me yet. Bridget is my little buddy and helps with me every project I do. She plants window boxes, sets up for bridal showers, wraps gifts, and talks in funny accents and tells silly stories the entire time. She is game for dashing to the grocery store at midnight and making chili for a last minute football party and laughs all the while. We can have some of the most introspective and enlightening conversations I have had with anyone. She has the best laugh and teaches me every day about responsibility and honesty.

The girls used to rotate grocery trips with me. They would walk the aisles, carry the groceries in for me, unload them, and put them away. Because of them, I have confidence to do this on my own. Because they were kids and kids understand baby steps better than anyone I know, they allowed me time to build my confidence while assisting me every step of the way. They helped with everything from Christmas shopping to the car wash. And not only did they help, they brought their bright and cheery personalities and without fail blasted any defeat or sadness right out of me. As young as they are, I can honestly say, they are some of the most loyal friends I have. Meghan, the middle daughter, is just this, my loyal friend. Any where we go, Meghan is the first to offer to ride with me. She always offers to go with me wherever I need to go. Her nickname is Barbara Walters because she asks a million questions. Her questions always make me think, she is like my little shrink. She has never wavered, epitomizes going with the flow, and prefers to be the cheerleader and is about the best one I know. Meghan's recent compassion for a struggling friend reduced me to tears. Meghan is an old soul and is always there when I need her most.

And Kevin is the oldest and the only boy. I was sure, since he was in Junior High,  he would have the hardest time, but how wrong I was. Six months after my accident, Kevin asked if I could speak at an assembly at his school. Kevin was proud of me. He is the brother I never had and never, ever sees me as anything but Sarah.

Tommy, Kelly J, Kelly R, Bridget, Meghan, and Madeleine. This was the day I spoke at their school. I used to babysit for all of them. Tommy and Madeleine were my first really babysitting job kids. I adore them. Please forgive this picture, it is old and had a fold. But, it is too special not to share.

Each of these kids has given me an invaluable gift. They brought back who I was, the core of who I am. They have showered me with love and continue to fill my cup. When I was so depressed, so alone, when I didn't want to see anyone, especially them...I couldn't bear for them to see me how I was, they didn't stop coming by, no matter how much I said I couldn't. They showed up and always brought back the life inside of me. We would sit and talk and before I knew it, hours passed and I was feeling normal, yet again. When I felt like no one cared or was there to listen, I would get a text from one of them out of the blue, asking a simple question about fashion or boys or school. It happened so much and just when I needed it most. They know exactly when to shine their bright and blinding light. And I am not the only one who can see the glow.

One hot, summer weekend the three girls, Eileen, and I decided to drive to Chicago for a few days. We visited friends, their family, went shopping, and walked around and enjoyed the city. We had a girls' weekend and it was fabulous. We were high on chatter and loved moving from one city activity to another. Smiling is contagious and when I am with them, my cheeks begin to ache. One of the evenings we were there we decided to go out to dinner. We went to this beautifully picturesque, outdoor Italian restaurant. We were seated at our table and immediately we picked up on whatever conversation we were having while driving to our destination. Grins from ear to ear, gorgeous girls with adorable dimples and infectious laughter radiated from our table. It always feels like this to eat with them. The talking never stops and the giggling resounds. Our dinner was delicious and I remember enjoying every moment and image of that evening...the cobblestone, the iron tables and chairs, the trees with white lights, the music, the food and the company. Eileen asked for the check and our waitress returned with the manager and they said our meal was paid for and they loved having us and told us to stay as long as we liked. Eileen right away said no way and was determined not to allow it. Earlier our waitress, who was in training, dropped a tray of drinks and one fell on Eileen. We assumed they were covering our meal because of the spill. Eileen was worried they were taking it out of her pay and thought it completely unnecessary. The manager told us that was in fact not the case and our meal was paid for by someone who wished to remain anonymous. Well, this was not going to fly with Eileen, she was going to find the person and properly thank him and insist that she pay. We tried and tried to figure it out and weasel it out of the waitress to no avail. Finally, we decided to leave while looking over our shoulders for any suspicious behavior. As we were loading in the car a group of people walked by and a man stopped and looked for a minute. Eileen turned and said, "Do I need to thank you? Do I need to thank you for buying our dinner?" He said, "No, no you do not. I need to thank you. My father was paralyzed. After his accident he wouldn't go out much, he just didn't want to. When I looked over and saw all of you having such a wonderful and happy time, it brought me so much joy I wanted to repay all of you some how." We continued to talk to him and tried to pay for our dinner, but he refused to allow it, only asking that we pay it forward someday to someone else out having a fabulous time despite his or her circumstances. We promised and left overwhelmed and overjoyed. Elated conversation filled the car the entire ride back to our hotel and I'm sure you could see the light from our car beaming like a cruise ship. Oh, and as we drove through the toll booth, the person in front of us paid our toll.

I have a lot to be grateful for and only realized the depth of my gratitude following my accident. Everyone helps in his or her own way. Repayment is not an option so I will share as much as I can, because people like this really do exist. People who are there for you when no one else is, people who suffer through the daily tasks with you and ask nothing in return. People who bring out the best in you and teach you to love in ways you never thought possible. People who refuse to stop glowing and lure you into their light. They exist and I know them.

Kevin, Meghan, Bridget, and Kelly all grown up.

The girls. Eileen, Bridget, Kelly, and Meghan. 

Monday, September 17, 2012


I had a fun, lighthearted post planned for tonight. I tried to write it, but am not feeling fun or lighthearted. The last few weeks have been filled with worry and fear. It is true that many wonderful moments have also occurred, but for some reason the darkness is winning. My endurance and determination seem to be slowing down right now. I've spent my time fighting my insurance company for much needed medication, desperately trying to heal the last stages of this infection, and worrying and fretting about security and stability. I always have worries now, who doesn't really, but some days the worries seem so heavy, so hard so bear. It seems as if I begin to see a quick glimpse of a light at the end of a tunnel, but then a huge, loud train forces itself into the tunnel and blocks any tiny ray or speck of light. And the big, obnoxious train makes all kinds of noise, just to let me know it is there and stealing my light. It is days like these that I have to remember that night on the floor or the day I fell to help catapult myself into new perspective. It is days like these that I turn and cling to hope and try not to let go. I am so tired and exhausted from fighting so much, but I know I will sleep and start again tomorrow. Because this is life, the good and the bad.

Monday, September 10, 2012

The Holy Longing

The Holy Longing
by Johann Wolfgang von Goethe

Tell a wise person, or else keep silent,
Because the massman will mock it right away.
I praise what is truly alive,
What longs to be burned to death.
In the calm water of love nights,
Where you were begotten, where you have begotten,
A strange feeling comes over you
When you see the silent candle burning.
Now you are no longer caught
In the obsession with darkness,
And a desire for higher lovemaking
Sweeps you forward.
Distance does not make you falter
Now, arriving in magic, flying
And finally insane for the light,
You are the butterfly, and you are gone.
And so long as you haven't experienced this:
To die, and so to grow,
You are only a troubled guest
On the dark earth.

Tonight I am sharing a secret story. I say secret because only a handful, if that many, know about this story. This is the tale of a night as defining, if not more so, than the night of my accident. This is the night I finally came to life again after years and years of darkness and struggle. Your kind words and encouragement have allowed me to finally describe the most vividly memorable night of my far. I remember every moment as if it was happening live and relive it often.

It was a freezing, winter's night and the wind was howling and hissing outside so fiercely I was terrified my old, casement windows were going to crack and shatter. My body was shaking and shivering, not only because of the frigid temperatures, but also because of my high fever. This was a particularly rough day. At this point I weighed about eighty five pounds and was vomiting and having excruciatingly high temperatures almost every minute of the day. I had already been to three wound clinics, a slew of doctors, taken several rounds of IV and oral antibiotics, and had every test requested by my doctor and no one could figure out what was causing my rapid and violent decline. Any fight or endurance that remained were long gone and my hope was close behind. A few days before, as I was taking a shower, I discovered whatever was wrong with me caused an enormous, gaping hole on the upper part of my leg and lower back side, causing what bones I had left to be entirely exposed. Remember, I can not feel my lower limbs at all, nothing, it feels as if they are asleep and barely tingly most of the time. My doctor at the time was at a loss and claimed to be dumbfounded. He requested yet another PICC line, which is a long term port for IV drugs. He seemed to do this every single time he didn't know what else to do. So a few days later, here I was, at home and alone with a PICC line in and freezing. 

I could hardly eat anything. If I tried, it would most likely come up shortly after, so I lost all interest in food and actually started gaging at just the sight of it. So obviously, I didn't have dinner and decided to go straight to bed. Sleep was rare, but I tried desperately and constantly to achieve an hour or two. Anything at all would help. I would usually wake up sweating and miserable from a fever breaking, but it was worth it for just a few, short moments of peace and rest. I hooked up my antibiotic, watched television, unhooked the medicine and drifted of into a light slumber. I layered on sweatshirts and robes and still was shivering. About three hours later, I remember being so pleased with how long I slept, I woke up sopping wet. Another fever bit the dust. I tore off my white robe, my purple Tulane sweatshirt, and my giant grey sweatpants. I was now happy with the relief the drafty windows offered. Sitting up at this time took all of my strength and I could feel every single stomach and arm muscle flex and rush with blood as they worked to raise my slight and bony torso. I had to use the restroom so I pulled my wheelchair towards the bed and prepared to lift my body and transfer from the bed to the chair. As I was doing this something slipped and rapidly I hit the hard, cold floor. I remember saying, "No, no, no, " as I was hitting the floor. Instantly, I burst into tears. I knew I couldn't lift myself to get back in the chair. I could barely dress myself without feeling as if I just ran a marathon, so this was certainly an impossible feat. I was already so low, so hopeless that literally pulling myself up was a mountain I was not willing to climb, but I had to. My family was out of town, the other family I rely on was also gone visiting a relative in Boston, and my dear friend, my person I call, was away at school. I was alone. I sobbed because I was so hungry and weak. I violently trembled with fear. I felt dizzy and lightheaded. My stomach suddenly started hurting and before I could prepare, I threw up all over my shirt. I scanned the room for the phone, but realized I left it in the living room. I pulled down a sheet from the bed and decided to scoot to the phone. My exposed bone jumped to the front of my mind and I quickly scratched that plan. I yanked the cushion from my wheelchair and lifted myself up enough so I was at least sitting on something soft. I decided it was up to me to get back in the chair and I just had to try. I situated my legs so I was on my knees and holding on to the bars on the front of my chair. My knees and hips continued to fall and shift and I constantly had to expend strength readjusting my position. I've lifted myself back into my chair hundreds of times. This is something taught regularly in therapy. But tonight, I failed hundreds of times. Over and over again I tried. Each time I grew more hysterical and more distraught. Blood was dripping down my arm and I looked down and saw I pulled my PICC line a little bit as I was attempting this maneuver. To make matters worse, I was covered in my own muck, my own bodily fluids. To say that I was terrified and desperate would be an understatement. 

I honestly am telling you I started thinking this was it, this was the end. This was how I was going to die, alone on my bedroom floor in the middle of one of the coldest nights of the year. My dog would be left starving because it would be days before anyone returned. It is awful to think of myself in that moment. How alone and scared I felt. How I planned how I would fall asleep on the floor and just wait to see what happened. How morbid. Because of my depression, which is detachment and isolation at its finest, I had very few people I could call and every single one of them was completely unavailable. And besides, I knew the phone was on a table and I wouldn't be able to reach it even if I thought it was a viable option. So this would be it. I wailed for what seemed like hours. My breath was short and I could feel my energy evaporating. I was depleted of everything. Dreams were no longer relevant and optimism did not come easily. I put my bloody and vomit laden hands up to my soaking wet forehead and cried with fear one last time. Exhaustion was taking over. And then something happened. I didn't plan it, it just happened. I was hopeless in all sense of the word...spirituality, religion, they left along with the dreams. My relationship with a higher power was struggling and almost non-existent. My legs were positioned, one falling over the other, my back leaned up against my bed, the white sheet wrapped around me and my cushion underneath. I looked up towards the ceiling, it just made sense at the time, and through my tears begged and pleaded and said, "Please, please, you have to help me, no one can help me, please, please, you have to help me." I said it a few more times feeling so ashamed because I was begging something I deeply questioned and not only questioned, but had serious issues with, but I pleaded anyway. And then everything became very still and very quiet. I started thinking about how I didn't really deserve help, how there were many, many more people suffering far greater tragedies. I again became very still and quiet. I saw a sliver of light across the floor from the street lights. I forgot to shut the shades earlier and only drew the curtains, how thankful I was for this now. It was the only light in the room. I felt a huge need to take a breath and so I did. I remember how I could feel the air slowly fill my body and then release in almost perfect form. I took one more breath and it was exactly the same. I was calm and focused now. I positioned my legs one more time and placed my hands on my wheelchair, ready to push my broken, sick body with any ounce of strength I had left. I curled and tightened my hands and tensed my forearms, then my biceps and then I soared. I became lighter than air and flipped my hips around and landed perfectly on my cushion in my wheelchair, covered in vomit and all. Stunned, elated, but stunned, I looked up one more time and questioned, "Whoa, thanks?"  

Energy filled my soul which fed my body and I went to work right away. I wrapped my arm with a bandage, called the nurse and explained what happened. She said it would be fine and would stop bleeding shortly. It did. I can't explain how quickly I felt a renewed sense of just came alive. I knew I wasn't alone. I didn't know who or what was out there, but I knew I wasn't alone. What I encountered was forgiving and there when I needed it most. After the realization of what just happened settled a bit, I turned on my favorite Bruce Springsteen album, I didn't care that it was 3:30 in the morning, I wanted to sing. I put on the album, cleaned the floor, and took a shower. The best shower of my life. I felt like all of the anger and resentment and frustration and worry and fear were beginning to wash away and trickle down the drain with the blood stained water. I returned to my bed and plugged in my space heater, knowing I would be up in a few short hours with the same sweats from the same fever, but I didn't care this time. I knew I could handle it. 

I woke up the next day, called my insurance company and demanded permission to schedule an appointment at the hospital of my choice. It worked. I finally was able to go where I wanted to go. I called my doctor at the time and told his office I would no longer be a patient and I wanted a full copy of my chart as soon as possible. the receptionist was stunned. She said, "Sarah, are you sure you want to do this, aren't you afraid no one will see you, you've already seen so many doctors?" Nope, for the first time since July 17, 2000, I was not afraid. I was going to be just fine and I knew it. Through a few more twists of fate I ended up with the doctor I have now who discovered I was carrying a very rare, but very serious blood infection the entire time. The infection was so aggressive and pervasive it caused most of the bones in my pelvis and hips to disintegrate. The previous doctor initialed the fax from the emergency room showing the infection, but just returned it to the pile, ignoring its results and prescribing the same IV antibiotics, one more time. His carelessness is astounding and it took me years to forgive him. Without my current doctor and nurse I probably would not be alive today. They sent me to specialists and did the hard work to discover what was truly causing my symptoms. Many treatments later, my infection is healed, bones are growing back, and the gaping holes are nearly closed. My gratitude for them is immeasurable and I say thank you every, single day. 

Without this night that seemed so dark and frightening, my infection might never have been found. I might not have been tough enough to leave that doctor and fight for a new one and I know I would probably still feel desperately alone. It isn't other people or things that take away this loneliness, this emptiness, it is the realization that I had and have the power to change to my situation, my life. There is something inside of me that begs to be alive and clings to hope and light rather than succumbing to the darkness. This is what I learned that night on the floor, any shred of light, any spec of hope is worth grasping because in the end it is all we have when we are alone and dark and cold. And when we finally let the light in, it becomes so bright and so powerful, dimming it seems pointless and futile, you just have to let it shine and let the hope pour through. 

Wednesday, September 5, 2012

The Neighbor Girl

Awareness is important and necessary to any kind of growth. The moment I became conscience of my behavior, my words, my thoughts, is the same moment I realized the immeasurable importance awareness has in our lives. It forces us to become responsible for our actions and reactions and propels self discovery.

It isn't an easy process at first, becoming self aware takes time and patience. I work on it every single day and still fail at it every single day. As much as I want to understand and want to lead with compassion when a cashier is short with me or when I pass a weird neighbor, sometimes my insecurities take over and I allow myself to criticize and judge. But, then, because of awareness, I snap out of it and gain new perspective. Hopefully this practice will become habit over time and my mind won't even venture into the dark side of judgement. My words, behaviors, and thoughts affect other people and I have stopped taking this for granted and refrained from denying culpability.

Today I encountered this lesson once again, right in my backyard, literally. I have this neighbor and well, we haven't had the warmest of interactions. In fact, most of the time I run into her, she walks the other way or just stands still and doesn't speak. She is completely unphased and almost bothered by my need to say hello, so I just stopped. When I would see her my ego would become a little bit bruised and I would start thinking thoughts like...she is so odd, why does she do this, or why does she do that, what is wrong with her, and the classic, what did I ever do to her. My instinct is to feel hurt I was not acknowledged or that my perceived expectations were not fulfilled. Immediately a feeling of defensiveness takes over and self preservation is all that matters. My pain becomes the most important. After I fight off the demon of my ego, I can see past the "weird" behavior and start seeing someone else's pain.

I'm not quite sure what pain my neighbor carries and frankly, it doesn't really matter and shouldn't really matter. My job is to refrain from adding to that pain and to try to show love and kindness, even when I don't want to. I started thinking about her in a different light over the last few weeks. I began seeing her as a human being and not someone who just doesn't say hello. And then, today, I came face to face with her outside while taking out the dog. I sometimes watch my friend's dog, Savannah, and because she is a golden retriever and I am on wheels, I have to be very careful. I can't take Savannah and Belle (my twelve pound cockapoo) out at the same time. Savannah is a lovely and wonderful dog, but she can pull me into the next state if I am not careful. As Savannah was doing her business, my neighbor flew by on her bike. She didn't look up, just kept riding along. Savannah, who is afraid of bikes, cowered and yanked the leash so hard it flew out of my hand. She was backing up to stay away from the bike. Almost instantly, my neighbor dismounted her bike, ran over to me and started trying to grab Savannah's leash. And in that act of kindness I saw a piece of her I neglected to see before...she is deathly afraid of dogs. She mustered every ounce of bravery, fought against timidly shaking hands, and reached out to grab a hold of Savannah's leash over and over. Because of her immense fear she kept pulling her hand back every time Savannah came close. She was overcoming her own fear to help someone else, someone in need. No matter how difficult it was for her to jump off her bike and assist me, she did it anyway. I called Savannah and made her sit and she did, the drama was over. I then looked up at my neighbor, I still don't know her name, and said, "Thank you, I can't believe how nice you are to try and help me." She just looked at me and hopped back on her bike.

I don't need a response from her. I don't need to know why she is the way she is and I don't need know what caused her trepidation around dogs. What I discovered I do need to know is that she is a person, just like I am, carrying around her own personal demons, dilemmas, and mountains to climb. And she shouldn't have to visibly fight against her issues, on my behalf, for me to comprehend and respect this discovery...I owe her these things because she is a person, a soul.

Monday, September 3, 2012


Recently I went to a friend's house for lunch. I haven't seen her in a long time because of my illness. She has two children now. A little girl who is four, and a boy who is about fifteen months. I could feel butterflies in my stomach the morning we had lunch. My nerves came from the worry her kids would be scared of my wheelchair. I know this is silly because time and time again kids prove to be the most accepting, least judgemental of any of us, but trepidation still ruled my thoughts. I rehearsed answers to possible four year old questions and conceded that her kids may just be frightened and timid.

I arrived and was immediately confronted with just how wrong I was...I couldn't have been more off base. Her daughter ran out to say hello and then asked me if she could walk with me to the car to get the rest of my stuff. She and I put together puzzles and talked about the colors pink and yellow. My wheelchair was really not a concern to her. I met her son, the little fifteen month old boy, and he is everything a boy that age should be, busy, sweet, playful, and into everything. Right away he started playing with the spokes on my wheels and a few minutes later, while chatting with Ashlea, I started to feel myself move and turned around to see his little self pushing the chair. He had one hand on each wheel and was pushing them forward, gaining quite a bit of momentum. Ashlea, who is an incredible mom, asked him to stop right away and I asked her to allow him to continue. I was astounded and overjoyed to witness him, not only exhibiting great ease with my chair, but embracing it. It was now a toy with wheels and he was going to push it, climb on and through it and try to discover every inch of it. It was a moment where I felt fear literally leave my body and worry trotted off right behind it. Sure, fear and worry left little pieces behind, but they took their main course and walked out of the door. I wonder how I will play with my kids, I always do, I wonder if I will be enough for them, but this past Friday, I realized I don't have anything else to worry about than the average parent. I may take a bit longer or can't reach as high, but kids don't care about those things. They just want someone to love them, spend time with them, teach them, and nurture them. How I look, whether or not I am sitting down or standing up, it doesn't fact, the wheels seem to be a playground all of their own.

Towards the end of the lunch, her little boy managed to squeeze himself under my chair while exploring and ended up stuck. We wiggled him out amidst great laughter and I left feeling more assured than ever that I am well and able and my dreams are truly possible.

A few days later, Ashlea texted me and explained as she was putting strawberries on her daughter's plate, her daughter asked, "Are these strawberries from Sarah Berger?". I brought fruit for lunch that day and now apparently all fruit in their home is from "Sarah Berger".

During some of my darkest days I actually started considering not having children and convincing myself I didn't want them. Me, the Pied Piper, didn't want children. Their well being weighs heavily on my mind. While I don't think I am one hundred percent confident, I am sure, very sure, that children don't see a difference, they just see a person, a mom.

Thank you Katelynn and Jackson for teaching me this one more time.