I have been an active runner for 27 years. We hear about the benefits of running, such as running adds years to your life, that it helps you sleep better, that is helps you lose weight, and keep it off, and that it improves mental health, and reduces depression. These are all great reasons to become a runner, and reasons that started me running, but these are not the reasons that have kept me running.
My mother has often told me the story of when I was around two or three years old I would take off running. At the time, my family lived in an old farm house on some property in the country. According to my mother, I would take off running through the long grass and wild flowers with our German Sheppard following and me giggling and laughing the whole time. My mother has told me multiple times how scared she got when I would run, because she couldn’t catch me, and how she thought me laughing was at her expense. I have no memory of this time, but I have seen photos of the property. Even thinking about it results in my body aching to run in those fields. This tells me that I wasn’t running and laughing at my mother’s expense. I was laughing because it felt so good to run.
I am 45 years old now. I have gone through two complicated pregnancies that left me on bedrest for months. I have had joint problems for as long as I can remember and have been through physical therapy ten times since I was 14 years old. I have a very long reoccurring injury list involving my connective tissues. At 18, I was told if I let myself get out of shape, I would lose my ability to walk. At 27, I suffered a major medical trauma due to complications with my second pregnancy. I was almost paralyzed, and even after 18 years, I am still bleeding internally. Luckily, my son was born healthy. My body gave everything it could to keep him alive until term.
At 37, I was told the only thing holding my body together anymore were my muscles. My bones are essentially floating. I am more like Gumby and less like Elastic Girl. I have been in chronic pain since I was a teenager and the pain has only worsened over the years. On 1-10 pain scale, I operate daily at about a six. My pain is typically like fuzzy noise in the background. I know that it is there, but I have adapted and learned ways to keep functioning. There are days that my pain is at an eight. When this happens, I am forced to take notice of it, slow down, and rest. If my pain continues at an eight past three weeks, and none of my pain management strategies are working, or if my level jumps higher, then I know I need to go back to the doctor.
I have Ehlers-Danlos Syndrome. I was born with it and there is no cure. My body can’t make enough collagen to bind my cells together properly. Due to my sensitivity to pain medication, including any medication that affects the chemistry of my brain, I am unable to use medication to manage my pain. I am allergic to narcotics, otherwise known as opioids. I receive no benefits from these types of medications. My pain management regiment consists of rest, ibuprofen, ice, and many different braces that not only support my ligaments, but also provide compression to areas where my tendons have degraded. Ehlers-Danlos Syndrome has also affected my connective tissues that support my organs. The Volcano is Awake was my attempt at telling my story about my medical trauma. My writing is chopping, because I was crying as I wrote it. I am still on my journey towards healing. One day I may even be able to fix my writing, but I am not to that point yet.
I love to run. Running helps ground me when my anxiety is racing. Running helps me release tension so that I cry. I run in rural areas so that I can scream at the trees. Trees are very understanding. I also run to keep myself out of a wheel chair. Running keeps my muscles strong. My physical therapist doesn’t even me to stretch, because I am already limber and I need every bit of stiffness I can get to help my muscles hold my bones in place.
Research shows that there is an overlap between people with Ehlers-Danlos Syndrome (EDS) and autism. This doesn’t mean that all autistic people have EDS. These are coexisting conditions and can exist on their own in individuals. However, this overlap is certainly true in my case. I also have thyroid problems and autonomic nervous system issues. These two conditions overlap with EDS as well. According to a study done by Kindgren, Perez, and Knez (2020), “Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are both characterized by generalized hypermobility, in combination with pain, affected proprioception, and pronounced fatigue. Clinical observation indicates that behavioral problems, hyperactivity, and autistic traits are overrepresented in children with those conditions.”
For additional information, please go to The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders.
What does this mean for that little girl who giggled and laughed as she ran through the fields and had no idea at all of what the future would hold for her?
It means that I have been autistic all my life even though I wasn’t officially diagnosed until I was 36 years old. It means I have always had EDS even though it wasn’t officially diagnosed until I was an adult and had already started accumulating a long list of injuries. It also means that I have had a love of running since before I can remember.
Running helps me feel free, like I am flying. When running, all my senses seem aligned allowing for calmness to settle in. While running, the overwhelming world that I live in seems to drift away and is replaced with the feeling of the breeze on my face, the ground beneath my feet, the steadiness of my breathing, and the sound of the birds and the wind through the trees. Running is how I meditate. Despite all the barriers I have faced in my life, all the pain I continue to endure, I have always found ways to keep running. I am a runner and will continue to run for as long as I can.
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