Caralyne in her “Forget Me Not” costume for her first grade performance. SO appropriate and such an amazing celebration.
Caralyne still smiling during an EEG post MRI.
“Tell me about your fitness routine”. This is typically one of the first questions that I like to ask a new client. I felt confident asking this because I personally pushed myself daily to “move”. I understood the importance of exercise to cope with stress as well as to manage weight and move throughout ones day comfortably and efficiently. I knew all of this and practiced what I preached–proudly. Until one day in March of 2o12 when my movement and routine came to a crashing stop. I was paralyzed with a fear only a parent of a sick child could understand. My daughter, then 6, had experienced significant behavior changes that we monitored since November of 2011. I slowly found myself spending my post client hours at her school asking for help, or seeking advice from a cognitive behavior therapist, or spending hours researching childhood behaviors. There was something wrong that we could not manage alone. I tried working with clients through these months and focused my attention on them, but as soon as my schedule cleared, I was dedicating my extra time to solve the mystery of these odd repetitive movements and tantrum type behaviors my daughter was experiencing. By February, we noticed her slipping away from us totally. She would stare into space for minutes and then rock into a ball for hours never stopping. She stopped making eye contact. She stopped speaking and only talked in a baby voice or grunts, and she would move through our kitchen opening and closing drawers over and over and over again and flipping on and off the light switch for hours. She feared water and refused bathing and drinking. She spent most of her day under a table, chair or anything that would cover her. She only ate certain foods–if she ate at all. My Pilates schedule was becoming a juggling act. I would spend up to 5 hours at a time trying to help her just come out from underneath a table and pray she would before a client arrived. Once she made it away from her “safe” place under something she would cling to me as if terrified of her own shadow—in her own home. My clients were so patient and understanding because many days my daughter was glued to me (not talking to anyone) and within a few feet from me, if not on top of me, while I was attempting to teach. One day after trying to work with a client, I had to stop to help Caralyne. She had turned her body upside down on a couch in my studio and began to cry “help me Mama” and then cried as if in shear terror. This was when I said, enough is enough we need serious help and answers. A few days later a medical resident at a local hospital insisted our daughter had mental issues and there was nothing to do but deal with it—this was the day I lost my energy. It had been completely zapped by an a complete insensitive stranger with no concept of bedside manner. He didn’t have an explanation as to why or what caused it, but that she needed to be admitted to a mental hospital. If that doesn’t knock your socks off…not sure what will. I had no response to him but to walk away, and take matters into my own hands. I knew my energy was going to be needed to get to the bottom of this. I sat paralyzed for good part of the night, not even sure where to turn for help. I started making appointments with any neurologist, psychologist and immunologist who would take us quickly. The doctors were baffled and passed her case on from specialists to specialist. After a few appointments, we found a pediatric neurologist’s physician’s assistant very interested in Caralyne’s case. She shared my determination and left no stone unturned. The neurologic tests started and didn’t seem to stop for almost six months. Spinal taps, MRI’s, endless blood draws, CT scans and doctor’s appointments, therapist sessions took over my Pilates schedule–writing these appointments down on my Pilates schedule seemed unbelievable–just a month ago it was full of privates, duets, and mat classes.
The weeks dragged on and on waiting for test results and MRI images were constantly “clear” with no signs of seizures or tumors. SO WHY and HOW is this happening??? This is how we lived for months on end. I felt myself day by day changing. My mind was focused on one her well being all the time. I learned how to predict or quickly to react to a tantrum in hopes of diffusing it before it took over for hours, or alleviate her intense fears of the moment. Every waking minute I was trying to make sense of what was happening to my little girl, so much so that I didn’t see what was happening to me…the Pilates instructor, the group fitness instructor…the one who asks, “Tell me about your fitness routine”. I couldn’t move. My posture had deteriorated. My full Pilates lateral breathes had turned shallow and rapid. Any last ounce of energy I had left I gave to my 8 year old son and husband—I had to remember them too.
I walked through the early days of her illness almost in a trance of complete anxiety and intense adrenaline–it was that sense of exhausted but unable to sleep mode. I remember meandering through a hallway at Children’s National Hospital in DC not able to lift my head. My shoulders were permanently rounded and tense and fingers constantly clenched in tight fists. My entire body ached and I knew why. I could “feel” what was happening, and I could hear my own words haunting me…”You need to move Marta, you need to lengthen your muscles to release this stress”. “You need to breathe”. I knew I should. I would attempt to lengthen my posture and focus on my pelvis in the very uncomfortable chair next to her hospital bed, and then I would cry. This was the extent of my Pilates practice, and I knew I had to make a change.
Between hospital stays I would escape to my reformer during her peaceful times (which were not very long) and begin with my BASI warm-up. I would work so hard to connect to my tense body and feel my imbalance due to tight muscles from shoulders to toes, and then it would happen. I would make that mind body connection and I would cry. This would happen over and over again and frustrate me to no end–I could not focus because of this awful wave of emotion. I could not get through a workout without a breakdown. What was happening to me?? I blamed it on pure exhaustion until it turned into pure avoidance. I struggled to do Pilates. How does this happen to someone who just a few months earlier would eat, live and breathe Pilates.
This torturous journey continued for months until we finally had somewhat of an answer in late August of 2012. Caralyne had suffered from a type of encephalopathy (a mycoplasma infection that attacked a portion of her brain causing her to have severe OCD, sensory integration disorders, uncontrolled emotional outburts and social anxieties as well as damage to memory and recall–she had regressed academically with her writing skills and alphabet recall). The doctor’s later officially diagnosed her as having C.A.N.S. (Childhood Autoimmune Nuerologic Syndrome). It is a very rare and under studied syndrome that is just now becoming recognized. There was no cure, no quick fix, no explanation as to how–only answer intensive therapy and hard work. We had an answer. That answer, and diagnosis, and all of the help from her therapists gave Caralyne the strength and determination to persevere. Her world would forever be changed, but she knew she would have to learn how to live in it. I admired her strength and endurance. She went from being homebound to full time in school and attend dance class two nights a week—because she wanted to have her life back. To me, that is pure strength…a strength from within to fight hard to make a mind/body connection just to accomplish a daily routine without distraction.
On the first day that Caralyne had been away from our house for a full day in months, I made a date with my reformer. Within minutes I was sobbing and angry at myself for interrupting my own practice. I mentioned this to my own therapist, clearly I needed it to stop and seeking help was my best defense. She put it into perspective for me. She said that I understood the power of the body/mind and spirit more than most. I believed in it, it was my passion, and I instructed others how to find it. What I couldn’t do for months was help my daughter make that same connection and I watched that connection violently slip away and torture her. I was feeling guilt that most could not understand…my daughter had lost an amazing gift and that guilt overwhelmed me. Clarity–what an amazing thing!
Later that day, my little girl came home from school. She shared the details of her day and nonchalantly danced around the kitchen ending her dance with a hug directed toward me. She then gave me the most amazing little bit of advice…in the midst of a hug she whispered to me, “I want you to do Pilates again Mama, I know you love it so much and you miss it”. Hmmm…my little, now 7 year old, just told me it is time to let go of the guilt and move on with my practice. To some it may seem like she gave me permission, but to me it was reassurance that she had the strength to carry on and I needed to carry on too.
I am still the same Pilates Instructor, but one with amazingly new perspective on the immense power of a mind/body connection and its impact on your spirit. Thank you Caralyne for lifting my spirit and giving me back that mind/body connection—which by the way no longer makes me sad! Keep dancing and working hard little Mama…you are my hero!!!