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by Tina B.
I am a believer in visuals that make us see our world and one another through beauty rather than destruction, rather than through labels of our illness and so this is my way of sharing my story with you.
Life can take us all through interesting twists and turns. Some positive. Some negative. Never does it seem to be that in-between intersection. Ah, but THAT is what makes it life. The bridging gap between our birth and our death. Two constant things every human being in the world shares in common. What’s your bridge made out of? How many times have you had to fix the bridge? Demolish the bridge? Diverted the traffic or convinced others to go slow in passing you or pushed others to go faster around you? Have you walked part way across, stopped, looked out at the horizon and taken in the Earth’s canvas?
Every canvas has its’ flaws, but we call it beauty. Even in the midst of a storm grieving for power, we see the beauty and we yield in our decisions. Yielding can be good. Yielding can also enable others to convenience us of something. It was 2016 – the year of the most insane, yes “insane”, realization that this would become my story, not some critic’s, but MY story that I was to be control of. I was not holding my breath on the outcome. I was not yielding to the decisions of others. Life, no matter how we lay it out, no matter how we try to control it, we are not in control of life but are in control of ourselves. To accept that is difficult but when we do we empower ourselves and one another beyond expectations.
As a human being, I got lost for 18-years in the struggles and distractions that came along the way. For 18-years I slowly uncovered what to me was a unique medical world that flooded me with symptoms, strange things from surgeries and small diagnoses that made no sense. Even providers and surgeons were lost in the mix as labs, radiology and physical exams left more questions than answers. Then in 2014 after two other surgeries earlier in the year, a perforation of the bladder and holes in the colon nearly took my life, I wanted to start living a better life and having better relationships, but instinctively I knew it meant a drastic awakening. I was 43-years old and I was not about to take tomorrow for granted! I refused to spend my years ahead looking backward, wondering about the path. I needed a “map” for success and support that would guide me in following the clues on a journey of self-discovery like I’ve never experienced. I knew it would come with the many forms of hardship, but the quality of life would be worth it.
I took control in 2016 by taking a step onto that creaking bridge whose planks seemed weak – I went to a Pain Rehab Clinic (PRC) for three straight weeks. One by one, each hour of the day I took a step physically, mentally and for the first time in my life with support and each time the planks creaked but they held because I came to realize that the canvas meant I looked upward and not downward. I learned my Sjogren’s had progressed, something I had since 1997 but never understood it could progress until one test gave me the opportunity to be seen in Rheumatology. More tests, more unanswered and complex issues for providers, but the new “team” of providers I had local and those at the facility would stand at my side like nothing I had experienced before. I had been a patient in the GI department for seven consistent years, but this…this was proving to be something of beauty that only one experiences inward. It was empowering because nearly one year after taking a journey with these doctors and other professionals I would have an answer to start a new journey.
I learned in PRC to not catastrophize, to moderate and to modify. I learned so much more but most importantly, I learned that I had life. Life in me and life to give others. I just had to figure out how to keep crossing that bridge.
In October of 2017, a follow-up from an Emergency Department visit to my local provider would change my life. What would often appear to most as perhaps “strange inquires” or questions from providers, I welcomed. This day would be no different until I heard “EDS”. I heard it again, “Ehlers-Danlos. Has anyone ever mentioned this diagnosis?” My reply was simple, “No.” It was followed by a wealth of information and conversation with the provider that finally made sense! The stitches that never dissolved, the pregnancy difficulties, the numerous attempts in my life to wear earrings to only have the backs fall off all the time, the “tricks” I could do with my skin and joints, the infections, bruises, gait difficulties, surgical finds throughout my lifetime, the far longer than expected recoveries, and the list goes on. Conversations with my other providers concurred and now I am looking ahead at an appointment Genomic Clinic in January. For myself and the three children (ages 27, 16 and 12), this journey has promoted inner-peace and joy despite these ever-changing circumstances of life.
Throughout this year, I have maintained being a part of a small Sjogren’s support group in Minneapolis and at home in Fargo, I have an EDS support group. We try to get together for meet & greets and support one another. Support groups that help each other discover, support and maintain boundaries and increase self-esteem give the opportunity to see the bridge, to take that one step and to look upward.
By bridging the gap between birth and death, there is a lot of little things that come loose, that need our attention but the most important part of it is that we often neglect how impossible these things are if we do not take care of ourselves. We are all so different and so too are the lives each one of us lives. Sometimes it takes a little step onto that creaking bridge to see the canvas and to not look downward. My first step after Pain Rehab Clinic was making my bed before I showered. Making a bed had been nearly impossible for me when I entered PRC. These tiny accomplishments one by one like making a bed have given me my life back.
We are human beings to a fault. We are to have discipline enough to live by the faith in which we practice. Faith is “complete trust or confidence in someone or something”, so don’t try telling me you don’t have faith. I hope you will agree we are human beings and we have faith because then it is worth assuming you have trust or confidence that will guide you across the bridge, along the road that twists and turns and onto the next bridge. Take the first step when you are ready, because if you are reading this perhaps you want to find your own self-discovery place that is your personal quality of life that brings you happiness knowing support is here with one another and through the Ehlers-Danlos Society. A Society that propels the medical community internationally and thrives on supporting us as patients! There is a wealth of information out there that we have and it will only continue to grow to help better our lives.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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