I met this week’s Gauntlet story writer in the waiting room of our neurosurgeon in Chevy Chase, Maryland. She was strikingly beautiful. She and her husband were waiting for a post operative appointment. I remember their humor and obvious love for one another. I remember the Brooks Brothers bag they carried with a gift for our dear Dr. H who is never without his navy blazer and beautiful silk ties. After our short meeting Sarah and I connected online. We’ve mailed pen and paper notes and small gifts across the pond. We’ve encouraged one another in the ups and downs of this maddening battle between our minds and hearts and all we want to do and be and the limitations of our broken bodies. Sarah is a shining example of the special sorority of suffering that has formed through the years in both our lives. Would I take all this back and not know her? Never.
United We Stand Taller and Braver
By Sarah Fatherly
I ponder my personal gauntlet with chronic illness and the devastating effects this has brought to my quality of life, and the waters are muddied.
One gift stands out.
As humans we are not made to be solitary creatures, but when struck with illness, particularly chronic and rare, we suddenly find ourselves plucked like fish out of water or a flower out of soil feeling lonely and isolated. If we are lucky enough to having a loving and supportive family our pain is eased somewhat. But what happens when the kids go to school, spouses go to work and the time we spend with them is fraught with obstacles and guilt? At this point we have often lost contact with friends as we struggle to keep up with the demands of socializing with any regularity. I spent five years of agonizing isolation and acute loneliness resulting in a depressed and morbid state. When I did feel up to activities with others I never felt like me. Who I used to be and who I wanted to be had slowly been chipped away. We see who we are through the eyes of others and without their reflective gaze we find ourselves in a crisis of identity. It wasn’t until more recently that I found myself on a new voyage of self discovery and ultimately a road back to myself.
Needing neurosurgery is never an enticing prospect. Needing to travel across the Atlantic away from family for an extended period even less so. This was my reality in 2014. It goes without saying that all the doctors, nurses and my surgeon were a great gift, but it is the unsung heroes in my journey who were shining treasure.
Melanie was my first gift. Before I even got to Maryland for surgery she was the person who cared for my most basic needs on a daily basis. I could share my darkest fears about what lay ahead and with her, and I could weep without shame or guilt. Her present to me was laughter, and we laughed a lot. With her help I could cope much better with all the anxiety I felt.
As I blogged about my experiences with EDS, Chiari, CCI and tethered cord, so many people (too many to name) sent messages of love and support which held me high when I was low. On the tide of their words I was carried along. In the surgeon’s waiting room someone recognized my English accent and shouted out support. There was a mother at the hospital whose daughter had just come out of surgery who wished me well. There were three wonderful girls who delivered chocolate mousse to my husband and I while I was enduring a particularly painful recovery. The hotel staff made us feel truly at home for the six weeks we stayed there. These are all gems mined from my painful journey. I have also had the privilege of making some fantastic friends who have ‘virtually’ held my hand and given me strength and determination on a daily basis.
One thing I have learned over the years is enduring the same health issues doesn’t automatically make people compatible as friends. However, if you are lucky, you can find people who not only reflect and understand your burdens but who also reflect the very essence of what makes you an individual. I have been this fortunate with my dearest friend, Lydia, who has given me the greatest gift of true friendship for no other reason than ourselves. I would never have met her had it not been through our shared medical conditions, and she has made it easier to navigate the murky waters of my gauntlet.
With our suffering comes strength.
United we stand taller and braver.
Sarah lives in the UK with her husband, Will, children, Noah and Nell, and her beloved Jack Russel Terriers, Duchess and Moo. She was diagnosed with EDS, autonomic dysfunction and chronic pain at the age of twenty-seven. She is now thirty-five. She has recovered from multiple neurosurgeries for CCI, Chiari and tethered spinal cord. She is living a better and more hopeful life. She is re-becoming a mother, wife and individual.
If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at email@example.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.