Where Did My Belly Button Go?
Surviving Necrotizing Fasciitis Through Dance
A story of love, hope and personal resilience
Laura Hayes-Meerman
I am a dancer and a survivor. Dance has influenced the way I move through the world and nourishes the essence of my being. My body, mind and soul are vitalized through moving and being moved and my embodied spirit is alive through creative expression. The story of my survival from Necrotizing Fasciitis is rooted in my identity as a dancer and movement has been a healing force in my recovery. I am so grateful for all the dancers that have come before me and forged the path of the profession of Dance/Movement Therapy. I share my personal narrative and the way in which my years of studying dance, psychology and Dance/Movement Therapy all came together to save my life. I honor my family, friends, teachers and mentors as they generously shared their knowledge and love. I am sharing the alchemy of what I have come to believe is true for me. I honor the dance in all of us.
Necrotizing fasciitis is an acute, rapidly progressive inflammatory infection of the fascia. The inflammation of the fasciae of muscles or other organs results in the swift destruction of overlying tissues.
Prologue
“My wife Laura has been in the burn trauma surgical unit at Brigham and Women’s Hospital (BWH) in Boston since December 30, 2016, when she was transferred by jet from Albany Medical Center ICU. Laura fought valiantly for her life due to necrotizing fasciitis and toxic shock resulting from an aggressive Group A strep infection. She needed substantial removal of necrotic tissue, including skin and muscle, to manage the infection and release of toxins. Laura overcame the initial infection and toxic shock, and her skin barrier has been largely restored through the great work of her treatment team at BWH, one of the premier burn units in the USA. The condition is very rare with a rate of less than 1:1,000,000 in previously healthy individuals like Laura. In part as a result of its rarity, it is extremely hard to diagnose, and due to the speed with which it progresses, there is a high rate of mortality. Laura is lucky to be alive, which is a testament to the strength of her body and mind.” Hendrik Meerman January 1, 2017
Chapter One
“ I continue to be amazed about your survival after the darkest days of Christmas 2016. It taught me, after 23 years as an infectious disease specialist, who cares for many critical infections, to remember that miracles do happen and always keep hope alive.” -Dr. Alan Sanders, Albany Medical Center
Surfacing
I surfaced from the depths of an altered state on February 5, 2017 with no memory of the events that took place from December 23, 2016 through February 4th. I knew something terrible must have happened and as I looked around my ICU room, my first instinct was to reach for my limbs. Finding them intact, I thought, “I’ll be ok, whatever has happened, I’ll be ok”. Little did I know the extent of the disfiguration of my body. It wasn’t until days later, when I was assisted to the bathroom for my first shower, that I saw my body in a full length mirror. I was overwhelmed and shocked at what I saw. Half my torso was gone. I was told how lucky I am to be alive and that the memory loss was a blessing. My first symptom from the strep A virus invasion was extreme pain in my shoulder. When I went to a clinic in Vermont, I was told I had acute tendonitis, prescribed pain meds and sent home. The pain worsened through the night and I insisted on going to the clinic again in the morning. This is not usual behavior for me. I am very healthy, rarely go to the doctor and often eschew medication, choosing to sleep things off. My husband said that although he wondered if I was exaggerating, he knew something was wrong because of my insistence on seeing a doctor again as it was two days before Christmas. When I returned to the clinic, a slight redness and swelling was spreading across my chest. The doctor thought I was having an autoimmune response and needed to go to the hospital. He wasn’t sure what was wrong, but it was serious. That decision saved my life. At the time, no one realized I had a life threatening illness. I thought I’d be seen by a doctor, prescribed medications and return home to have Christmas with my family. At Bennington Hospital, I started to have a blackening of the skin and the treatment team thought that I might have been bleeding internally from a ski injury, causing pooling of blood.
My mother was ready to bring me home, but the doctors decided that I needed to stay overnight for observation. That was the next critical decision that saved me because the Strep A bacteria continued to spread from my right lymph nodes through my body. The cardiologist on call was concerned because along with experiencing tremendous pain, I had mixed symptoms of low white blood cell count and grossly elevated heart rate. The following day, my kidneys were failing. At this point, still, no one realized I had necrotizing fasciitis. It wasn’t until I was transferred to Albany Medical Center because of the critical care I needed, that the diagnosis was made. Within two days, the necrotizing fasciitis had spread through my torso and into my legs. My first of my nineteen surgeries was Christmas morning. I have no memory of any of these events and certainly did not understand that my body was about to be forever altered.
Chapter Two
I Am Not Alone
My family was given directives to say goodbye and prepare for my death. No one except my mother thought I was going to survive. She has reflected on her belief in my survival and now knows that it was rooted in not only denial, but a belief in my strength and determination. She could not fathom losing me. Palliative care was discussed, but my husband and sister decided that I would want to live, even if I was missing a limb or permanently disabled. They requested that the doctors continue with surgeries to cut away the dying tissue. My family arrived in Albany, surrounded me with love and prayed for my survival.
The talented and intuitive surgeons at Albany Medical Center worked quickly and carefully to remove the dying tissue and preserve as much of my healthy body as possible. My excellent health was a life saving asset and I surprised everyone, except my mother, in my ability to endure the surgeries and complications related to toxic shock and sepsis. Once the diagnosis of Necrotizing Fasciitis was made and the statistics of mortality on my diagnosis became clearer, there was little hope for my survival. I believe that the strength of my body, mind and soul evolved from years of dancing, which supported a healthy system, and cultivated my ability to attune to the needs of my body under attack . The doctors were amazed at my fight for life and found my recovery “remarkable”.
“One of Laura's surgeons, who has participated in nearly every one of her surgeries at BWH, admitted originally feeling overwhelmed at the extent of Laura's tissue loss when she first arrived, and has marveled at Laura's extraordinary improvement and rate of recovery, which she believes is a testament to Laura's excellent prior health.” Hendrik Meerman January 26, 2017
“Ok here is the latest...they only had to remove a small amount of tissue and said she is still deep in the woods but that her chances of survival have increased since this am. They are in discussions about which burn unit we should use if she can continue to improve. We are all still praying that she stabilizes and we can switch to recovery mode. Please keep praying.” Carrie Sutter, December 28, 2016
Chapter Three
I Didn’t See the Woods
There is no preparation for a sudden, life threatening illness. No good-byes, no words of love and no final words of asking forgiveness or making amends. The strep A entered my bloodstream from a tiny cut on the outside of my thumb. I’m not sure when or where I got the cut, but it nearly killed me. Step A bacteria is everywhere. It took me a few days to fully understand the extent of my illness and subsequent surgeries. Before gaining awareness, My husband told me it was like the movie Groundhog Day because each morning I’d wake up confused about what was happening. He said he got better at explaining the scary mess I was in and learned what to say to reduce my anxiety. It wasn’t until February 6, 2017 that things began to stick. I remember the daily questions from the nurses to orient me, and my annoyance in my impaired ability to answer the questions. I realized relatively quickly that the white board in my room had the date on it, and felt accomplishment in my stealth. Everything becomes relative when surviving a life threatening illness. Although I lost skin and tissue, I had my limbs. Although I might have pain and limited range of motion for the rest of my life, I was alive. I kept on convincing myself that everything would be ok combined with thoughts of despair of how this awful thing could have happened to me. Lying in bed with tubes coming out of every hole except my mouth, in my mind, it was a few days before Christmas. But my story is about personal resilience, hope, love and support, not illness. I could never have survived without the excellent team of doctors, nurses and staff or the love I received. Love and hope are truly healing elements and food for the soul. Hope is an active ingredient that is not only a source of fuel, but connected me to my family and caregivers through a shared vision of the possibility of recovery. My family stayed by my side the entire time. The outpouring of love and support through cards and prayers filled my room. I had posters made by my sister, brothers, children, nieces and nephews, decorating my walls. When people walked in, it looked like a healing party. In several conversations, when I went back to visit my treatment team at Albany Medical Center and Brigham and Women’s Hospital, practitioners commented on the important role that my family had in keeping me calm. All my energy could go into healing rather than anxiety. I was held in love and my body could do its work to heal.
“Laura’s caregivers have been dazzled by her self-motivation and work ethic to strengthen and heal her body.” Hendrik Meerman February 11, 2017
Chapter Four
In the Woods
Throughout my hospitalization, people commented on my strength and positive attitude. I didn’t see any other way to be. Going into the hole of despair is a scary venture and although I had moments of deep sadness, my focus was getting out of the hospital. I set daily goals to keep me on track. Simple ones that were accomplishable. My primary goal, once conscious, was to get the tubes out. There was no way I could do physical therapy with a tube hanging out of my butt. That was the first to go, followed by the catheter. Being able to go to the bathroom on my own opened up my system to start regulating on a basic bodily functioning level, moving my bowels. I couldn’t eat food or drink in my early surfacing days. I had a tube, running up my nose down the back of my throat and into my stomach. My first initiation back into the food world was through thickened liquids.Thickened water is as awful as it sounds and I worked hard to get passed that stage. I dutifully did my swallow exercises and the joy I felt when I was able to have tea with manuka honey warmed my entire body.
“Laura had another good night. She is motivated to improve and reduce the number of tubes connected to her body. One was eliminated overnight and another removed this afternoon!! Laura says she’s channeling Uma Thurman in Kill Bill, Vol 1, exerting her mental strength to accelerate healing, one toe at a time.” Hendrik, February 10, 2017
“Laura was very excited to see Zac this afternoon, smiling and mouthing questions to us. She still retains her sense of humor, as when Zac asked if she wanted to hold my hand she smiled and shook her head!” Hendrik, January 10, 2017
Chapter Five
Surviving in the Dark Woods
Having a sense of humor is a huge asset when going through the arduous task of surviving a life threatening illness. Laughter changes the energy in the room and the connection between patient and caregiver deepens. Humor is healing and the people around me knew my sarcasm and wit permeated my life. I love to laugh.
“While she has some difficult times each day, she has a positive outlook and she continues to joke around with the doctors and nurses, giving them a hard time. Laura style.” Carrie Sutter, February 16, 2017
In Sickness and in Health
My husband, Hendrik, has a nickname in our family, the Stabilizer. He was the calming force in this tumultuous experience. He not only supported me, but took care of our son, who was 13 at the time and our daughter, Nelleke, who was in college. My husband and Zac relocated to Boston to be close to me and our daughter remained in college in California. Hendrik would show up almost every morning for the rounds with the doctors. He was diligent and thoughtful with his participation, an advocate for my life. I felt such confidence and sense of security knowing he was there for me. His loving presence eased my body, mind and soul. Having Hendrik as part of my treatment team saved my life.
“You probably all realize this by now, but Hendrik has been an amazing advocate, husband, and friend to Laura. His love and devotion to her has been tireless and inspirational. We all owe him a tremendous amount of gratitude in helping Laura get to where she is right now. I just wanted to acknowledge all that Hendrik has done for her in this serious time of their lives.” Carrie Sutter, January 2, 2017
I Am A Mother
I believe that being a mother is transformative and the connection between mother and child is powerful. I was not ready to leave this earth and my children. My son, Zac, was by my side and whispered encouragement in my ear before my early surgeries, and although I was not conscious, I know his words reached my heart and soul. He was heartbroken and scared, but was able to give me support and love throughout my hospital stay. His presence in Boston eased my being. Attending school in Boston was a difficult transition for Zac, as he was in 7th grade, and had to start a new school in the middle of the year. Not only was he processing possibly losing his mother, but was facing the challenges of middle school without his familiar peers. He was fortunate to have the love and support of family and friends. Although Nelleke was in college in California, her prayers and love gave me strength. She made a banner that hung in my room, a daily reminder of her presence in spirit. She remained focused on her education and her faith in God gave me peace as I knew she was held in love. My Mother My beautiful Laura is definitely going to make it. I know it has to be so. Anne Hayes, Jan 13, 2017 One of my deepest fears is losing my children and I imagine this to be true for my mother. The presence of my mother during my dark hours in the hospital was critical for her own acceptance of the tragedy unfolding as well as to provide support for my recovery, reinforcing the belief that I would survive. She also relocated to Boston and arrived at the hospital daily to bring love, humor and chocolate. She never showed her fear of my death, giving me confidence and encouragement during the challenging days. Her unrelenting, unconditional love has been a source of support my entire life.
My Mother
My beautiful Laura is definitely going to make it. I know it has to be so. Anne Hayes, Jan 13, 2017
One of my deepest fears is losing my children and I imagine this to be true for my mother. The presence of my mother during my dark hours in the hospital was critical for her own acceptance of the tragedy unfolding as well as to provide support for my recovery, reinforcing the belief that I would survive. She also relocated to Boston and arrived at the hospital daily to bring love, humor and chocolate. She never showed her fear of my death, giving me confidence and encouragement during the challenging days. Her unrelenting, unconditional love has been a source of support my entire life.
My Sister
With my sister, 1970
My sister, Carrie, is my best friend, keeper of memories and secrets and a healing force in my recovery. She was by my side almost the entire 3 month hospital stay. I am so grateful to her husband Tom as well as her children Carlin and Kellen for supporting her in helping me. Words cannot explain the comfort I felt with her around. She would french braid my thinning hair and cut my much needed toenails (The hospital staff are not allowed to do toes). Beyond the mundane activities, the presence of my sister calmed me and I felt confident in her care . She generously put her life on hold to tend to mine. I will be forever grateful for her humor, intelligence and encouragement during the dark days in the Woods.
“This is Laura's sister. I have been visiting with Laura since yesterday and am so grateful to see Laura in a much better place than when I saw her last about a week ago. She is much more alert and looking real good. She has been giving us huge smiles. She can't speak because of the trache tube, but is communicating with us by mouthing words. Some words are easy to understand like "I love you," which is amazing to hear. Other words are not so easy. I wish I was a lip reader, but she has been patient with us. She is cracking jokes about how silly my mom looks in the get ups we have to wear, pointing at her and making a face like "can you believe how ridiculous she looks!" She was also just joking about how she doesn't want to give up the swabs they are giving to her to keep her mouth moist. You can tell how badly she wants to get better. She is exercising her fingers, toes and legs and listening intently to her doctors and nurses. She also told me how hard this was for her. I told her this would be the hardest thing she would ever have to do in her life and that she was doing amazing and that a lot of people were loving and praying for her. Hearing that made her feel better. She wanted me to tell everyone how much she loves them. So thank you for all the prayers, love and good vibrations. She really appreciates it.” Carrie Sutter, January 14, 2017
Music
Carrie bought me a little bluetooth speaker and life changed in the room. Almost as soon as I realized what had happened to me, I started planning my “live life to the fullest” party by creating a playlist. Finding songs to add was a fun activity and shifted the mood in the room. Music helped me through some heavy times and I always had my favorite tunes playing during my wound care, which would take approximately 1.5 hours, three times a day. It was extensive and involved changing bandages on my healing grafts and donor sites. The process was painful and I imagine it was challenging for the nurses. We bonded over music and I felt a lightness in the room despite the tragedy of the situation.
Dance
Laura did a total of five laps around the floor, two this afternoon and three just now, busting out several dance moves to the B-52's Private Idaho along the way! Laura again expressed her gratitude to all. Keep the good vibrations heading her way! Hendrik, February 25, 2017
I’ve been a mover since the day I was born and dancing connects me to my spirit and personal resiliency. When I dance, all my worries and thoughts dissolve and I live in the present moment, in my body. My soul soars and I feel a connection to others. My family knows this and encouraged me to move to music as much as possible. Although I was receiving PT and OT, it’s not the same as dancing. My recovery shifted when I could stand and use a walker to ambulate. The dancing started when I began walking the halls with speaker in tow. With my miniature boombox, I started to move my hips and kick my legs to the rhythm, feeling new energy surge through my body. My sister encouraged me to do punching movements and immediately I had more range of motion in my arms and strength in my legs. The lifting and strengthening exercises I did bedside with the PTs and OTs were helpful, but dancing elevated my rehabilitation to new levels. My family and I discovered that the elevator lobby of the 8th floor was usually empty and a great place to dance. The song Rock Lobster by the B-52’s will forever be synonymous with the memory of my 55 year old brother-in-law, Tom, writhing on the floor doing the worm as we all laughed and danced to support my healing. Never underestimate the power of dance and laughter. They can make intolerable events tolerable and bring moments of joy to devastating situations. They do not diminish the pain but allow the pain to be endured.
“Laura was pretty tired when it was time for her PT this afternoon. We coaxed Laura to get up and show how far she has come in the two weeks since today's physical therapist had worked with her. With our encouragement Laura went for a walk outside her room and we brought along her portable speaker (that was sent recently by her sister Carrie) and newly created "Live Life to the Fullest" music playlist. Laura paused a few times to throw out some dance moves and had everyone in the ward dancing with her! She even took some steps without her walker! Laura continues to surprise and impress all her caregivers with her humor, positive mental outlook and the rate of her physical improvement.” Hendrik, February 11, 2017
Acceptance
I seemed content just thinking and staring out the window whenever I was alone. There’s a lot to think about and sometimes nothing at all. I had to accept my current situation and not worry about things I had no control over. Focusing on healing became my job and my world became the hospital room and hallways. The moment I looked down and noticed my belly button was gone was profound and I felt a deep sense of loss. All I could think about was “Where did my belly button go?” Whenever anyone entered the room, I would inform them of my lost belly button and we’d have a good laugh, but inside I was crying and screaming for my old body. I had the usual body image issues that come with aging and growing up as a dancer, but nothing prepared me for losing 40% of my skin, tissue and muscle. Acceptance comes slowly and I needed months to process what had happened.
Some days the sun shines brightly, other days there are storm clouds, behind it all a loving universe exists , bringing meaning and joy to all who say, yes! You are my bright shining star that glows in the night helping me to see . Connie Meerman Aug 1, 2018
The Imagery and Visualizations
Visualizations and images are incredibly powerful and empowering for healing. Going through a traumatic body experience crystallizes the ideas of healing through connecting the brain to the body through thought. Placing images within the body is a useful way to work with visualizations. As I lay in bed, I remembered one of my mentors, Tina Stromsted, telling me a story about her mentor using imagery to help her heal from a life threatening illness. That memory was affirming and it helped me focus on positive thoughts when I was lying in bed, waiting for my body to work it’s magic. I had reached a point in my hospitalization where I really wanted to leave on the timeline I had set. I had undergone 18 of my 19 surgeries and desperately wanted the grafts to take. If they didn’t, I was looking at another month added to my hospitalization. So I put the imagery machine to work. I placed a small tree in my lower back and imagined it giving roots. Everyday I would imagine the tree growing, developing leaves and then flowers. I sent warm energy into my back and thought of conscious healing, sending the cells to communicate wellness. As I lay on bed rest, thinking about opening neural pathways, sending blood flow into the wounded areas and praying for success, helped me feel like I was doing something. When the doctors removed the bandages after several days, the results were good and my date to discharge was still on target, March 25, 2017. I’ve been thinking about the power of imagery in surviving a life threatening illness and the connection between patient and caregiver. I realize that when I shared my tree imagery with people, there seemed to be a universal understanding of how the tree image might be helpful. This connection through imagery deepened my relationships and supported the healing process.
Rejoice for Laura: Strong winds bellowing
Branches bending do not break
Flowers bloom in Spring
Tom Sutter
Chapter Six
I am not my Illness I am not my illness even though I live it every waking moment. You can’t see the deep scars hidden behind my clothes where the skin grafts are adhered to the rib cage, but I feel them all the time. I lost all my fingernails and most of my hair from the trauma and although hair growth is painless, nail regrowth is not. I put bandaids on my fingers to keep from snagging the new nails as they grew and pushed up the old ones. I yearned so much for my old body and continued working on accepting my new one. Early in my recovery, I was aware of my jealousy of people who had their bodies intact, an anger that was fueled by my loss. My projections onto people were profound and I worked on positive self talk to help me distinguish between my fantasies of people’s thoughts and reality. It is easy to slip into self pity when suffering, and I continue to struggle with acceptance, but the pain has lessened. I work at embracing the new me.
I Understand
I remember the first day without a home visit from my nurse for wound care. On the one hand, I was relieved that I was well enough to be on my own, but on the other, I felt lonely, vulnerable and scared. How could it be that I actually missed the hospital, nurses and doctors? I felt shame creeping in as I wished I had people taking care of me. Being in the hospital for a long time impacts identity and meaning in life, shifting perspectives of what is possible moving forward. There is a middle place between illness, rehabilitation, recovery and health. It falls between the cracks. It’s the place well, but not well enough. I now understand the feeling of loneliness that comes when health care professionals are no longer needed. I understood on a physical and emotional level the desire to be rehospitalized. I have a tremendous support system and an emotional intelligence that assisted me in my recovery. In the moments of desperation, I had someone to turn to and seek comfort, but also knew I needed to widen my world. I shifted my attention to my movement goals and created purpose and meaning through daily routines that supported my recovery. We all have a walk, a distinct way of moving through life. I lost my walk through this ordeal and the moment it returned, I felt a sense of peace and relief. My walk came back while buying groceries. For quite a while I had trouble walking. I had to gain strength and push through pain to find my strut. I recognized that I would never be the same person I was before necrotizing fasciitis, but we all change and experience shifts in our bodies as we age. Finding new ways of moving to do simple tasks became my focus. Sweeping became my OT exercises and picking up dog poo was was PT! I now notice certain ways my body naturally accommodates to increase my range of motion. My body knows what it needs to do to, and I move.
Chapter Seven
The Body Battle Scars
Scars tell the story of the battle the body fought to survive. I’ve read about the beauty of scars, but I don’t see beauty, I see strength. My new body is not beautiful, but it’s strong and I believe the fight for life was ignited the day I was born. I tap into this strength and body wisdom on a daily basis.
In body trauma there is a psychological piece that takes longer to heal. The physical wounds are the main focus in the hospital and I was warned that I was going to need more emotional support after discharge. The wounds would heal, but my soul and psyche needed healing too. My experiencing and sensing of the world was now through a body that had severe nerve damage and physical trauma. I needed to find the new me. I entered into another realm of healing. I wanted to dance. As a Dance/Movement Therapist the concept of body memory and trauma stored in the body is not new to me, but I experience it differently now. I have had the experience of being directly impacted by a movement gesture triggering a traumatic memory and the swiftness that it usurped the system fascinated me. My curiosity and self awareness helped me work through my re-experiencing of events on a physiological level, and I was able to ground myself in the present moment. I was aware of the power of movement as being both traumatizing and healing. My body memory was holding onto experiences that were unprocessed and, if left unexplored, had the potential for disrupting my day to day life. My journey to health needed to include movement so that I could revisit the trauma living in my body, and develop a new relationship to the memories. Movement was my medicine to reprogram my neurological responses to my memories. Movement in depth is healing.
The Body Knows the Way
In the depths of my illness, I have no memory. No conscious thought about fighting for my life. What was driving that incredible force that helped me survive sepsis, toxic shock and 19 surgeries in less than 3 months? I have reflected on this question for several months and believe my body tapped into an energy, a personal resiliency, that not only fought for survival, but gave me strength to overcome obstacles and trauma. Personal resilience can be strengthened and comes from a core survival instinct that supports the body, mind and soul. My profession as a Dance/Movement Therapist supported the strengthening of my personal resiliency and enabled me to have the courage, stamina and determination to get my life back to a functioning level. On a deeper level, my Dance Movement Therapy training and somatic awareness saved my life. My bodily felt sense knew something was terribly wrong initially and my decision to go back to the doctor a second time, although out of character, was the first critical decision that saved my life. Trust embodied awareness. We all have resiliency and can access it in our daily lives through self care and creating routines that are meaningful to support health. Personal resilience has life affirming instincts, is supported through embodiment and can be ignited like a fire when the threat of being extinguished is real. With conscious thought no longer in the driver’s seat, my body’s fight for survival was embedded deep in the mind and soul. The soul and mind need the body to exist in the physical world. I believe in the power of positive energy and the wisdom of the body to preserve the Self.
“Laura had a visit from her primary surgeon and the rest of her team of doctors this morning. They were impressed by the ‘remarkable resiliency’ she has demonstrated.” Carrie Sutter February 27, 2017
Chapter Eight
Relationships Are Healing
When I went back to Albany Medical Center on the 1st Anniversary of my admission and Brigham and Women’s Hospital 5 months after discharge, and also on the 2nd anniversary of my admission, I was able to see several nurses and doctors that were involved in my care. There was acknowledgement of the incredible work performed by all the staff, but my recovery was beyond that. I was a “far outlier” with a 90% mortality rate based on my condition and many said my “remarkable” recovery was due to my excellent health and personal resiliency. I was not supposed to live and surprised all my doctors with my determination and strength.
My desire to return to the hospitals to thank the doctors, nurses and staff for saving my life was an expression of my gratitude, but was also connected to my own experience working in psychiatric hospitals. Seeing former patients happy and living their lives always revitalized me and gave meaning to the difficult task of working with chronically mentally ill individuals. I wanted my caregivers to see the end result of their amazing job of saving my life. I was proud of my accomplishments. I beat the odds, and I wanted everyone to see how far I had come in my rehabilitation. Several professionals shared that seeing me well “made their day” and I felt as if I was giving a gift to myself and the people who cared for me. Gratitude supported my healing journey and I felt nourished by thanking the people who saved my life.
Chapter Nine
Out of the Woods
I returned to West African Dance Classes as soon as possible. I knew the drums and the dance would be healing. Dance has marked important transitions in my life and I wanted to return to the circle of dancers to celebrate life through the shared experience of moving together.
When I returned to the dance floor, I still had open wounds and that were carefully bandaged. I was slowly tapering off morphine and pain management was critical to my healing. I wanted to stop taking morphine and knew I needed to find ways to move and dance despite my injuries. I now take gabapentin for neuropathy, but I’m conscious of body aches and pains that have become an accepted part of my existence. Through acknowledging my challenges and strengths, I create a shift in my life and embrace new opportunities. The “Joy of Being” dance retreat at Mt. Madonna, led by an inspiring dancer, teacher and singer Debbi Nargi Brown, was a healing highlight on my journey as I attended the gathering several months after my discharge from the hospital. I was surrounded by a group of dancers and drummers, supporting me and celebrating Life. I was an embodied spirit, connecting to the dance and meeting others in another realm of existence, a place beyond words. The joy I felt in my being.
Reinhabiting the Body
I first became familiar with the term re-inhabiting the body in Dr. Tina Stomsted’s paper, Re-inhabiting the female body: Authentic Movement as a gateway to transformation. Her research, writing and warm willingness to share her wisdom has influenced my development as an Authentic Movement practitioner and Dance Movement Therapist. I began re-inhabiting my new body through inner listening and moving; reaching the depths of my embodied soul and supporting my continued healing as I moved in the circle of women. Authentic Movement is a self directed practice based in body wisdom. Movement is a pathway to bring unconscious material to conscious awareness through the role of a mover and a witness. The practice encourages self exploration, expression and transformation as well as cultivates the ability to be present with oneself and another, to see and be seen. With the mover moving with eyes closed, the intention is to tend to an inner experience, to listen deeply and to follow an impulse to move. The witness holds the space for the mover with conscious awareness, noticing thoughts, feelings and images that arise. The mover is supported through verbalizations following the movement, allowing further integration of the movement experience. I returned to Authentic Movement in the role of a witness. Prior to contracting Necrotizing fasciitis, I facilitated a monthly Women’s Authentic Movement Group. I started the group again as soon as I could sit for long periods of time comfortably. Witnessing and sharing my story with the group was nourishing and helped me engage in life in a new way. Being an embodied witness was healing. I reached new levels of acceptance as my body, once again, was my tool to connect with others and encourage self exploration, expression and transformation. Returning to Authentic Movement as a mover was not easy. Closing my eyes, dropping into my body and listening deeply was an invitation to return to my trauma, stirring feelings of loss and sadness. Simply getting up and down from the floor was difficult and painful, but I knew moving from within was essential to my healing. Opening to my trauma, in the presence of others, allowed me to enter into the dance of forgiveness around my feelings of body betrayal and loss. My anger needed to be moved so that I could love my body again, with all its glorious scars. I needed to honor the strength and adaptability of my body and the practice of Authentic Movement became a place for the full expression of the complexity of my healing. I was witnessed in my pain and accepted into a circle of women who held the space of my being. My anger evolved into a tenderness and appreciation for my body's resourcefulness to survive, welcoming the opportunity to live life to the fullest through acceptance of the present moment. The following is a poem that I wrote during an Authentic Movement Group in the Spring of 2017, facilitated by Jane Blount.
The Deep Woods of the Soul
Everyone suffers
A tear destroys integrity
The seam needs to be mended
The connection
Needs a language
To inform and integrate
The body language
Intricate messages
Sent across tissue and scars
Listening and aiding
The body as it moves
Toward healing.
Everyone suffers
And my pain Is no greater than yours
It is mine
And I hear you cry
Filling my cup with tears
The salted drops
Drip into my bowl
And my third eye grows
Filling the space
Of my lost belly button
There is a knowing that comes
From being deeply rooted In my body.
I tell my story to raise awareness about Necrotizing Fasciitis and to share my healing journey through dance. Being a Dance/ Movement Therapist saved my life because my body, mind and soul were united in the fight for survival as a result of my lifelong preparation through dance, development of kinesthetic awareness, attunement and personal resiliency. The love and support I continue to receive are vital sources of my embodied being and the essence of healing.
Poem I wrote from Authentic Movement Retreat with Jane Blount, October 2019
I Am Here
My belly button
Rises from the depths
Like a phoenix
My third eye Is open in my pelvis.
I found my lost belly button
It can dance
In the spirit
Of my imagination.
I weep for my body
My friend, my savior
Relax into being me.
Appreciation for Albany Medical Center and Brigham and Women’s Hospital
Journal entry by Hendrik Meerman —
Jan 12, 2017
As Laura continues to progress in her treatment plan here at BWH, I want to express our sincere appreciation for the care that she received at Albany Medical Center. Today Laura's BWH burn unit attending surgeon unsolicitedly stated that AMC did a tremendous job just saving Laura's life! The attention and care that Laura received from the Surgical ICU and Trauma staff at AMC was outstanding and exceeded my expectations. The entire treatment team, from the nurses and support staff through and including each unit's senior attending physicians, was attentive, communicative and responsive to both Laura's and our (her supporting family's) needs. Her treatment team at AMC, through the efficient coordinated efforts of multiple specialists and staff, was able to stabilize her condition, and then quickly secure placement and transfer to a premier ICU burn unit here at BWH for her continued treatment. Too many people were involved in Laura's care and treatment at AMC and BWH to call them all out individually. Nevertheless, Laura's progress to date is a testament to her strength of mind and body, prior excellent health and decisive action at AMC and BWH, which ensured the best possible chance of a successful outcome.
I dedicate my story to the healthcare professionals who saved my life and to those who continue to save countless lives around the world. Words cannot capture the depth of my gratitude. I dance today because of you.
Addendum
Timeline of Events
December 21, 2016: The first day I noticed pain in my right shoulder after skiing at Stratton Mountain in Vermont.
December 22, 2016: Went to a clinic in Vermont for an evaluation as the pain was increasing and I was very uncomfortable. I was prescribed pain medication and went home.
December 23, 2016: The pain was significant and I returned to the clinic to get another evaluation. The doctor recommended that I go to Bennington Hospital immediately. I was admitted later that day.
December 24, 2016: After attentively monitoring my symptoms overnight, the cardiologist on call at Bennington Hospital proactively arranged my transfer to the ICU at Albany Medical Center, so that I could be seen by additional specialists.
December 25, 2016: First of five surgeries over five consecutive days at Albany Medical Center.
December 30, 2016: Transferred by jet to Brigham and Women’s Hospital ICU Burn Unit in Boston, Massachusetts because I was stable and needed their specific expertise to restore my skin barrier.
December 31, 2016: The first surgery of my fourteen surgeries at Brigham and Women’s Hospital.
February 4, 2017: I regained consciousness and was able to retain information and be actively involved in my treatment.
February 17, 2017: The day of my eighteenth surgery. This is the first surgery I remember.
March 3, 2017: The day of my nineteenth and final surgery.
March 25, 2017: Discharged from Brigham and Women’s Hospital after an almost 3 month stay in the ICU.
March 27, 2017: First visit to UCSD Burn Clinic in La Jolla, CA.
March 28, 2017: First home visit with my nurse for wound care.
April 18, 2017: Admitted to Scripps Hospital in Encinitas because of a 104 temperature and cellulitis in my right leg.
April 22, 2017: Discharged from Scripps Hospital and returned home.
June 10, 2017: First Live Life to the Fullest Celebration!
June 16, 2017: First West African Dance class following my illness.
June 23, 2017: Family trip to Ireland. This trip marked a tremendous shift in my recovery as I faced many fears around living my life fully.
July 25, 2017: All my wounds were finally closed! No more wound care!
August 6; 2017: Returned to Brigham and Women’s Hospital in Boston to thank my treatment team.
December 24, 2017: Returned to Albany Medical Center on the first anniversary of my admittance in order to thank my treatment team for saving my life.
January 3, 2018: First day skiing following my illness.
March 25, 2018: One year anniversary of my discharge from the hospital. A day of celebration!
Appreciation for Caring Bridge Website
I would like to show appreciation and support for the Caring Bridge website. During my hospitalization and the months following my discharge, I was able to stay connected to family and friends through this amazing website. I am so grateful for the forum to share my story and receive love and support. My story remains on the website, and if you are interested in learning more about my journey and Caring Bridge, please check it out. Caring Bridge provides an amazing service for people who are communicating with loved ones during an illness.
More about me: I have danced my entire life. My “Bugs in My Hair” dance from preschool is a fuzzy memory, but starting in kindergarten, I attended the Grace Liccione Dance School in Mt. Vernon, NY, and my joy for dance permeated my life. I learned how to do headstands on stools, walk on my hands and was adept at remembering choreography. Our dance troupe competed at the Waldorf Astoria in the early ‘70’s, winning a trophy and further solidifying my dream to become a prima ballerina. My confidence and self esteem were boosted through dancing and I have always felt a warm tingling sensation as well as exhilaration when on the stage. Ballet helped me through my elementary and high school years. Being part of Felicity Foote’s Greenwich Ballet Workshop gave me a community of peers that supported my identity and helped form my understanding of the power of movement and dance to support health. Modern dance was the foundation of my college education, supporting my individuation and identity as I navigated my way through young adulthood. I received a Bachelor of Arts in Psychology at The University of California Santa Cruz, but took more dance classes than psychology. The discovery of Dance/Movement Therapy saved me as injuries sustained in college impacted my ability to dance professionally. I attended Hunter College and was fortunate to have studied under Claire Schmais, Elissa White and Nana Koch, with Joan Berkowitz being my first supervisor. I continued to develop my Dance/Movement Therapy skills and attended the former Authentic Movement Institute in Berkeley, California, under the direction of Neala Haze and grateful to have also had Tina Stromsted and Linda Aaron-Cort as my teachers and mentors. Authentic Movement continues to support my emotional, spiritual and physical well being and is integrated into my life through work and self care.
Fun Fact: My son was born following a West African Inspired Dance Class in Santa Cruz, CA . The community of dancers and drummers sang to me to bless my labor and birth. Within a couple of hours, my water broke and my son Zac came into the world, pushing and moving out of my body and into his own.
