Remembering the Secret Language of My Body
by Lisa Anita Wegner
I am an artist and performer and I have been diligently working on myself for as long as I can remember. The changes I’ll be writing about follow on the heels of ten years of trauma therapy, soul searching, body work, meditation, physiotherapy, chiropractic, shiatsu and many stretching techniques. I used rollers and balls, yoga, deep pressure and hot baths. Despite all this, I spent years of my adult life with a stiff core spasming and experiencing ongoing cognitive dropout. I lived an exhausting life of feeling overwhelmed without finding rest.
The last few years had been successful for my art career, but my days were full of pain, cramps, digestive issues, breathing problems and constant nausea. My nausea was so loud it would take up all my bandwidth, leaving me unable to see, hear or process information. I could do an action or a task for one or two hours maximum. Then I needed several days to recuperate. My days were hard to get through. Last year, I spent more than half the time completely in bed, able to be upright for maybe 15 minutes twice a day. I combined my studio and bedroom and I had two helpers do everything for me. Here is a blog post from a flareup to get a sense of my worst days: https://lisaismightybrave.wordpress.com/2019/10/03/art-saves-my-life-every-day/
As well as trying the therapies I listed off, last year a few things really helped me start to recover my life. The sitting Body Braid (bodybraid.com) helped me find my sit bones, Banana Bag Therapeutic Drinks (bananabagdrink.com) helped me with my ongoing dehydration, and the Curable Pain app (www.curablehealth.com) gave me lots of additional tools, especially the writing exercises. Also worth mentioning was stopping drinking Ensure® which I’ll touch on later. A huge part of my current path to wellness I attribute to my daily somatic movement practice.
I have complex-Post Traumatic Stress Disorder (c-PTSD) and hypermobile Ehlers-Danlos Syndrome (EDS) with scoliosis and a leg length discrepancy. Since primary school I have been wobbly and weak and yet been so stiff I couldn’t even remotely touch my toes. I was laughed at as a child. If pushed, I would collapse or faint, and felt that I couldn’t carry my body around. My doctor and gym teacher told me I clearly didn’t want to participate. My body was in so much pain and my pelvis was turned under so I couldn’t rest on my sit bones. Sitting still in class was painful, better if I could sit on my foot. If a teacher wouldn’t let me I’d be in a tight pain that soon turned overwhelming. I had ongoing headaches and stomachaches and nausea. To survive, I sucked it up and pretended I was okay. As you can imagine, my days were incredibly hard, and to survive I stopped processing pain. I unknowingly internalized it as my own weakness and failure.
As an adult, I found myself often too sick to do basic things for myself. Without diagnosis, this resulted in deep depressions throughout my life and finally having to go on Disability. In my 30s I got a c-PTSD diagnosis, and in my 40s I got my EDS diagnosis. Now I am getting help and am believed by my doctors.
I want to mention my gastroparesis diagnosis, which means partial paralysis of the stomach and is a serious disease that prevents your stomach from digesting food and emptying properly. I’ve just started diagnostics and am on high doses of prescription anti-nauseant, twice the dosage of chemo patients. I take enough muscle relaxants to knock the average person out. At this point, I’m happy to have some relief and I hope to be able to wean off these in time. I recently found I have extremely low digestive capabilities. For many years, I wasn’t able to eat meals at all and Ensure® or Boost® was the only meal replacement I was offered. They both are a corn syrup-based ultra-sweet goo, and after ten years my body literally refused another sip. Despite being told Vega® protein was not complete nutrition and not doctor recommended, I now drink several tablespoons of Vega® Protein & Greens per day in juice or my Banana Bags. I feel much better and am eating more bites of food each day. I’m up to eating the equivalent of four small meals per week.
Having to stay home for COVID made a positive difference for me. Once my body was sure I wasn’t going to haul it around, I felt my nervous system relaxing. After a few weeks of not having to leave the house at all, I felt more personal energy and focus than I had in a long time. The world was finally at the right speed for me. In this space of slightly better nutrition and much-needed rest, I was able to make better plans for my life. A few weeks into the pandemic, I found somatic movement.
Right away the theory of somatic movement clicked with me. I love to watch babies do slow pandiculation and I noticed my dog stretches gently every time he gets up. I liked the easy slowness of it, and that it is a gentle process. My performance practice is based on experimentation and I understand the freedom of not being tied to a certain outcome. Every time I start a movement, I’m so curious how it’s going to feel. What’s going to open, shift, and release. It is always different and with genuine patient curiosity and Sarah’s program, I have learned so much about my body in these last months.
In order to do anything with my extreme limitations, I had to adopt a new way of thinking. Slow became the new fast. Instead of rushing for a deadline, I’d aim for the next one. I turned projects down. I said no, even to good opportunities. And did all my actions in bite-sized chunks. If I was overwhelmed, one action might be just to go to the door of my art storage and open it. I would consider that one task done. I became my own caregiver and considered myself a toddler who could tire easily. And this would keep me feeling like I was moving toward something, as opposed to floating in hopelessness, brain fog, nausea, and cramps.
EDS is a connective tissue disorder that makes my body mushy and limp when I’m not actively using muscles. After taking my arm, a friend once said, “You don’t feel human, you feel like a cat.” So to do somatic movement, I had to make some accommodations to even learn the moves. For example, I can’t lie unassisted on my side. My hips, knees, and feet don’t stack. It takes muscle power for me to hold my body in any position that’s not fully supported. I can’t feel where my body is in space and it takes near all my muscle power to hold a position. If I release completely on my side, all muscles go what I call “full earthworm.”
At first, I was trying to hold my body tensely in the correct positions, but in time I understood that I needed to find the best support in the starting position. After much experimenting, I found that wearing high-cut running shoes holds my ankles and feet firm enough. I use a neck pillow to hold my head in place and wear compression leggings to give my hips control. I also got a tumbling mat so I can put my hands under my head more comfortably and lie on my stomach. Without the padding, my fingers and kneecaps get crushed under my own weight. By experimenting with supports, I could feel what worked.