I am participating in Yoga Reaches Out to give back to Children’s Hospital and to give HOPE to patients and families who are facing challenging times. My long journey started at Children’s Hospital with many chapters including Open Doors and taking my first yoga class to the present circle of love and life. I began as the patient and now I am the yogi participant collectively joining together to connect to PEACE, HOPE and HEALING with others. I have a deep appreciation for life realizing just how fortunate I am, with gratitude in my heart. I want to give back, to unite others to come together celebrating today, this is where the true miracle lies. The power of yoga, it is my responsibility to serve.
At the age of 18, five days off to college, I awoke in an emergency room in Vermont and after my first grand mal seizure. My world was turned upside down. No driving, swimming, downhill ski racing etc. I was walking out of the student center and got a sensation in my body I had experienced since a young child: tingling in my right arm travelling up to a swishing sensation in my ear like a seashell, feeling like I was leaving the earth. Through the years, I thought it was normal. Prior to college, it was getting worse and I let my parents know. I was brought to a doctor to see if something was wrong. I was told at the time it was probably water in my ear due to my daily running and swimming. Yes, I was called “spacer” growing up until I woke up in an emergency room confused. I was told I had a grand mal seizure. Things fell into place, I had simple seizures my whole life, but the first grand mal seizure was the beginning of a lot of testing, hospital stays, medications, surgeries and many ambulance rides to the unpredictability of where I would be when I had a seizure. After experiencing more seizures, I was admitted to UVM Hospital for testing, spinal tap, MRI, etc. Shortly thereafter I was brought to Children’s Hospital after my parents conducted research to find the best neurologist -- and the long journey began. I first had some outpatient appointments and testing and then a month later I was admitted for what is called “long term monitoring”. I was hooked up to a machine, on a leash, and my head was covered with electrodes and wrapped like a mummy. My seizure activity was being recorded and on video as well. This was not painful, scary yes, there was an uncertainty what lay ahead for me, but who doesn’t?
What sticks in my mind still to this day is this young boy around 6 years old riding a big wheel in the hallway at Children’s. We both were on the 10th floor, me in the neurology unit and he was in the organ transplant unit. He stopped in my room and said, “I am sorry.” This young boy was waiting for an organ transplant. His eyes were filled with curiosity and innocence and yet sadness for me, I didn’t look good, curious or innocent. From that moment forward HOPE was brought into my heart for him, I was the lucky one, a tumor had been ruled out. I had to believe, I would conquer my seizures. I continued to pray this boy would receive a transplant. I continued to explore new options over the years to find control for my seizures but knew things could be worse.
For over 23 years, after many procedures at Children’s Hospital, visiting many physicians and surgeons in Boston, including brain surgeries, I was trying to find control. I wanted my freedom back after losing my license and many other passions at 18 and felt stuck between walls unless I was playing with my children or outside running. Unfortunately, seizures were still not in control, but I had to believe there was more, I had to hold onto HOPE that things would change, and somehow, I would continue to move forward. I was given the ok after a month of testing to have a baby, my seizures had shifted from grand mal to partial complex. I was tested to see how much oxygen I lost during each event for a month. I was given the OK, the oxygen level was above 85%. During the testing I was told anything below 85% and I would have to work on controlling my seizures. So much gratitude in my heart, I had a baby girl, such joy. After the pregnancy, my seizure pattern shifted again and was experiencing multiple seizures daily. That was the end of having siblings for my daughter. I was to meet with a Neurosurgeon at Children’s Hospital but was waiting till after the Christmas holidays, come to find out I was pregnant. How could this be? I was on a new drug that had just come on the market and I was 6 weeks pregnant, ugh. I was taken off this drug immediately sticking with the one of the three drugs at the time that was approved for pregnancies. I delivered my son 7 ½ months later. Neither pregnancies were easy, I was sidelined from an exciting job at the age of 27, pregnant with my daughter. I met with the surgeon after my son was born and underwent my first two brain surgeries a week a part when he was 11 months old. First, to put grids on my brain and monitor me again but this time from the inside out and a week later awake, a resection was performed based on the information from the electrical activity over the week. Unfortunately, the resection was unsuccessful. Surgery was conservative because the operation was based on abnormal electrical activity with nothing structural showing, yet. I was tested for hours awake making sure my speech and other cognitive functions were not being affected. My chance of success was only 40%, we had to be conservative, but I was going for it. Unfortunately, a week after being discharged, I had a seizure and was back having them regularly. I needed to heal and move forward but again not losing sight of HOPE. I needed to find something to empower me, to feel as if I had a purpose in life and to make a difference in this world. Realizing things could be so much worse. I absorbed myself in an overnight camp for children with epilepsy run by Co-Founders from the Brigham and Women’s Hospital. Year one I served as a counselor and a camp committee member to year 5 directing the camp and when I was given the opportunity to take it over, I declined. What was I thinking? I had worked so hard to direct and fundraise. I realize now today, I declined out of fear, fear of failure, still wanting my freedom with my health. I chose to run a marathon, raised 25K on my own and donated it to the Epilepsy Foundation of MA & RI, at the time all proceeds going to Camp Wee-Kan Tu. So many of the kids at this camp were followed by Children’s Hospital. Such a joyful experience, kids were able to participate in activities they often were not able too. There was staff, there was a medical team and there were adults too volunteering their time for a week and a number with epilepsy as well. Kids got to lie next to me in the infirmary as I got to lie next to them because I too had uncontrolled seizures. So beautiful to witness the children after resting and stable, they would return to the camp activities with playfulness and curiosity. The seizures were not defining them at camp, the focus was on having fun like kids should. When illness or disability is a piece of one’s life, it so easily can be taken away from play and fun, one can be robbed of their childhood or the years one is affected with the medical condition.
I continued to explore different options. I had the vagal nerve stimulator implanted shortly after the failure of my brain surgery and being one of the first patients since it was approved to have it implanted at Children’s. Unfortunately, it was not helping the seizures. I had tried almost every medication on the market, participated in many drug trials at different hospitals all still not finding the control needed for my seizures. I was considered refractory epilepsy, meaning drug-resistant epilepsy, and odds were against me . . . this was my life. Again, HOPE had to lie within me, I kept looking for more options, believing opportunities would arise. I couldn’t believe this was it.
Over the years, technology advanced and I chose to keep exploring. I had another MRI, discovering there was a structural abnormality deep in my brain which wasn’t seen back when first diagnosed but the gift of new technology! I was told based on the depth of the structural abnormality (not cancerous and again a gift) it had probably been there since birth. That was another gift, the worry of my children having seizures because it was genetically passed on was washed away. Since I was adopted, I had no medical records or history of seizures or anything else. The good news was my kids will not follow my path of seizures; the unfortunate news at the time was if I were to have another surgery, I would be taking the chance of losing my speech and the odds of it were 20%. After my first two procedures at Children’s, I had experienced the loss of my speech 24 hours after the surgery, only for a few days. I knew what it felt like, the frustration of knowing what you wanted to say, with the inability to do so. It was a sense of being trapped in one’s body! I will stick with the seizures, for now.
I went for the last surgery at a different hospital, but the medical team worked closely with Children’s Hospital and the Brigham which got me through the first 20 years of my uncontrolled seizures. I was heading off the night before my last brain surgery and my son gave me a poster he drew, at the time 8 years old that read HOPE IS WITHIN YOU, I LOVE YOU. How could a child express this, feel this, know what it meant? I guess the power of the HOPE I held in my heart from the beginning of my journey at Children’s Hospital lived on in my children’s heart and was reflected to me what I needed. That poster rests on my bureau and I continue to read it every morning as I get up. There were and still are days when I question and that is when I need this affirmation the most. Through the innocent eyes of children, what they see, experience and express.
A lot was at stake, I was taking a change of a severe speech impediment. Do I go for it? Yes, with intelligence. The lesion was found a few years prior to the last brain surgery but couldn’t be touched because of my speech center. Once technology again continued to advance, new imaging came out with functional MRI’s lessening the odds of losing my speech from 20% to 5% so I went for it. What it showed was I formulated my speech on the right side of my brain and articulated on the left. Prior it was believed it was all on the left until could be proven differently. I had questions on a piece of angel paper asking if is it possible based on the depth of my structural abnormality, it has been there from birth, is it possible the right could have taken over for language? My questions were ahead of technology, but it all unfolded over the years.
Surgery began, I didn’t realize what I was up against, HEALING. The next morning, I no longer knew how to walk, how to use my right side since I was very weak, nor could I speak clearly. Fortunately, for the most part, this was because of the swelling from the depth in my brain where the resection was made. A three-centimeter structural abnormality was broken down into thirty slices, my surgeon removed 28 ½ slices. During the procedure I lied awake again for hours, my speech was tested as well as other cognitive functions and I still have a very small portion left in my brain. Surgery had to be stopped at 28 ½ slices because my speech was beginning to be affected. Interesting, I was getting anxious and asked, “Are we almost done?” Yes, my skull was being closed. If the surgery continued, I would have been up against permanent speech loss. I did not know this until I was slowly recovering. My recovery was not easy, was a similar recovery to a stroke with Physical Therapy, Occupational Therapy and Speech Therapy. The speech was the biggest challenge for me. I again wanted perfection and yet I needed to take a step back and fill myself with gratitude. My seizures went from multiple a day to one every two months. Really, that was a gift! It was my 40th birthday, I had gone through the extensive therapies, now what do I do? I was still seeking that independence from living without my license. I truly thought that would set me free. Not knowing anything about yoga I expressed, “I must do something, the medical world has given me so much and done everything they can up until this point, the rest is up to me. I am going to try yoga.” Not knowing what yoga was off I went, I was driven to Open Doors Weymouth for my first yoga class on a Sunday. I was so afraid! I didn’t know what I was walking into. I stuck with it and it was just the beginning of a new chapter, true freedom. I got my license 6 months later at the age of 40+ after losing it at 18, seizures were under control the mind body connection was happening and it wasn’t the license that set me free.
I was seeking freedom for so many years, yearning for control of my seizures but the yoga practice taught me that freedom had nothing to do with the license and what I could not do. The freedom lay within me. I just needed to find my way home, to connect to today finding the joy within me. This so easily can be clouded over with uncertainty, illness and disability.
Thank you Yoga Reaches Out and Children’s Hospital for raising hundreds of thousands of dollars for the Wellness Program and Every Child Fund. I have HOPE for the patients and families, and I am grateful at last to be participating in year nine, sharing with others, giving back.
Please consider donating to Team Hope. Every penny counts!
Much Peace, Love and HOPE,