Syringomyelia Messed with the Wrong Chick!

About Dr. Erica Gelsey 

I had already been retired from the military for over 7 years, when I suddenly became paralyzed.  My history is one of great physical self-inflicted harsh work, from contortionist stunts and surfing- to professional ballet, on point at age 11.  At 18, I trained on nuclear subs, then decided on being an Army doctor in toxicology.  For almost 30 years, I wore many hats, many types of hazardous protection, did HAZMAT, always a first responder, a disease fighter, a risk assessor and risk taker.  Yet, here I was 2012, simply throwing a sock in the dryer and felt an electric shock up my spine, a strange buzzing pain from the waist down.  I had never had back problems, I always prided myself on my beautiful muscular back, but that day I went down.  I couldn't stand or walk, my back no longer functioned.  I crawled around the house for a few days, figuring I had just tweaked a vertebral disk, it was 'sciatica'.  As I swelled rapidly in weight and lost control of my bodily functions (yuck), I finally relented to my stubborn self, and called an ambulance.  It would be several months, and hundreds of tests before they would MRI my cervical thru to my tailbone and diagnose me with a syrinx (split spinal cord brain stem to T9), Syringomyelia (a cyst or tumor wrapped in and out of my spinal cord from T1-T9), and spinal cord scoliosis and tether, cerebral spinal fluid flow and pressure obstruction.  Yes, that's my MRI to the left.  A condition rendering me paralyzed, with severe neuropathy and intermittent loss of control over my body.  My heart rate is sometimes uncontrollable, and my physical and mental abilities are challenged daily.  My excellent diet, exercise and 29 vitamins a day didn't stand a chance against this disease.  Physical therapy didn't know what to do with me, and insurance only gave me six weeks of that a year.  I needed everyday.  At some point in my career and in my daily abuses of my body, I had traumatized my spinal cord.  The diagnoses- Post Traumatic Syringomyelia.  My vitamins daily were replaced with 18 medications daily, from pain medications to steroidal injections.  Just to get out of bed everyday, I hated taking them.

Pilates got me out of the wheelchair!

I did a grand tour of Neurosurgeons.  The best in the country limited to where I could go in a paratransit. I didn't, or couldn't fly because the CSF pressure would drop or go too high and I'd suffer for months with severe complications, like not being able to swallow or speak.  I was told "Non-operable" everywhere I went.  My syringomyelia was too big, and being post-traumatic, the source of what is feeding it, can't be known.  Most people with this condition, have maybe an inch or two of a spinal cord split, at the most, mine is almost my entire spinal cord.  Surgeons explained this meant cutting thru 18 vertebrae and dissecting my entire spinal cord.  After surgery, I would never walk, never turn my head again, could never bend again.  Much worse I would leave the hospital a quadriplegic with, possibly up to 7 follow up surgeries, because there are always complications, maybe even death.  I had no hope for several months and went into a deep depression. 

Not one to be held to a wheelchair, athletic my whole life, I tried to walk and this resulted in falls.  Many falls.  So many I was placed in Hospice and home nurses would come to assist me to exercise and learn how to swallow and talk again.  All signs pointed to my dying soon.  The pink paper, final directive, was taped on the refrigerator, my last wishes.  It was bad enough to be in a wheelchair, but every time I went to the fridge I had to see "do not resuscitate"!  In short time, I developed MRSA, everywhere, from folliculitis, and was not allowed to see my daughter who was 5 at the time.  Hospice took her away and she had to live with her dad.  NOTHING kills a woman faster than taking her child away.  That's when my heart broke and I finally got mad.

That was the last straw for me.  It was either get my ass out of the wheelchair or give up.  I stared everyday at my Stott Pilates Reformer.  I hated it, sitting there (in use as a laundry hamper and filing system at that time), the only form of exercise I knew and loved my whole life.  I was always a bit of a contortionist, yoga, Pilates, Gyrotonics, and had been certified for 2 decades to teach it back in 1992.  I had even owned studios previously.  I had always been super-advanced coming from ballet, but could I be the patient this time and rehab myself?  I had no other hope but to try.  I started out with doing about 10 minutes a day and thought for sure that would kill me.  

Sometimes I got stuck on it because I couldn't get back up.  At which point I would sleep on the reformer and the nurse would come the next day and have harsh words for me.  But I did it everyday regardless.  Soon I graduated from the wheelchair to the walker with a seat, then a walker with a basket, and then and now since 2015, no walker, no cane, nothing.  I still have neuropathy and pain.  I still swell up to beyond what my weight has been all my life.  That's why I sleep on a BioMat.  Yet, I feel l am in control of my body.  My favorite quote by Joseph Pilates, "The Pilates Method Teaches YOU to be IN CONTROL of Your Body, NOT AT ITS MERCY".  I can now do Pilates, but I have restrictions and limitations.  As long as I respect those, my wheelchair and walker stays in the garage!  

In the wheelchair, I was at my bodies mercy, everyday I let it dictate to me what it would, and would not do.  Today I am in control.  I guess that's why Joe Pilates called it Contrology.   

Its amazing I have come full circle with Joe Pilates.  I've been super advanced achieving and maintaining an idyllic dancers body in my youth, to being a special population, using the same methodology to rehabilitate myself out of a wheelchair and back to walking, making my rare condition stable.  

My clients have heard me say this many times, and if you join my studio I will say to you over and over, "Joseph Pilates was a genius", and occasionally "All hail Joseph Pilates." I wish I could have known him.

I knew immediately I wanted to spend my days volunteering to help others and bring the Joseph Pilates Method to as many people as I can, so that they can experience the undeniable benefits, and life changing form, the Pilates Method gives you.

Establishing a non-profit in 2016, Anatomy of Movement Inc., has elevated my spirit and vision to build an adaptive fitness center in Sonoma County, including a full scale Pilates studio for special populations.  I had the advantage of a Pilates Reformer at home.  I had the knowledge and education of what to do for myself, the power to acknowledge and accept my limitations, and the daily constant of being able to do that work.  Otherwise, I would still be in the wheelchair, or maybe not even alive today.  There is no adaptive fitness places to go to daily in Sonoma County.  No, we can't go to 24 HR or CRUNCH to workout in a wheelchair.  First and foremost, those personal trainers are not trained in dealing with these various diseases, and second, none of the equipment is adaptive.  Adaptive means that a person can either wheel up in a wheelchair or walkup.  Trying to workout in a regular gym made me so depressed. 

 I hope you join me in bringing my vision to reality, benefiting those who struggle with paralysis everyday, a place to workout daily, their mind and body, have recreation, have a greater control of self, and overall better quality of life and community.  I know I can't promise everyone will leave their wheelchair behind, but if you are in one, you and I can try.

I still sleep in a hospital bed at night, elevated at a certain angle to keep my spinal fluid flowing, I sleep on a BioMat, I don't need as many medications, and I am still here.  All I can say is, all hail Joseph Pilates and the invention of the BioMat!

In 2017, I was trapped for over 4 hours in the Tubbs Wildfire in Fountaingrove, CA. I suffered burns to my legs, severe smoke inhalation that caused damage to my eyelids, sinuses and mouth trying to get out. I still deal with these injuries today, just as Sonoma County deals with more tragic fires each year, the more hazardous smoke we breathe. Everyday, myself and my clients are trying to work through these post wildfire tragedies where everything was lost, including our vision of the future, our surroundings and our hope. We are still trying to get it back!  Despite these challenges I choose to be a volunteer, not a victim.

Erica Gelsey

Executive Director