Chronic Illness Life with Ehlers- Danlos Syndrome for me means relying on my loved ones for assistance and support like I never have before. A good support system is crucial to getting any quality out of life with incurable disease and disability. I am fortunate to be surrounded by a few good people who always provide support, unconditional love and a compassionate understanding for the challenges I face daily with my ever declining health.
This post is the first in a series of “Thankful Thursdays ” articles running until Thanksgiving 2016. In an effort to bring more structure to Only in this Head and to reconnect to my gratitude at least on a weekly basis I will be sharing posts about those in my support system deserving of special mention and gratitude while also sharing the lessons I am learning about accepting my own disabilities and living a quality life cognizant of my suffering but not controlled by it.
My major decline with Ehlers-Danlos Syndrome in 2015-2016 changed my life in ways I am still adapting to as I author this post. All the years of chronic, invisible health issues were finally “officially” diagnosed by a geneticist in the winter/spring season of 2016. You can read more about my health struggles and the purpose of this blog on my About Page.
In summary, I went from total independence to total dependence in less than a year’s time from this latest decline. While the progressive loss of abilities continues, my life is changing into something I barely recognize. Fortunately, my support system is solid and helps keep me grounded in dealing with the moment-to-moment challenges, let alone the day-to-day!
The foundational pillar of my support system is my hubs. We’ve been together since 2010. We found each other at the perfect time in life. His kindness, demeanor, understanding and heart was refreshing in comparison to the relationships of my past. We are best friends, soulmates and comrades in life. His actions speak of unconditional love and undying devotion more each day. He is my primary caretaker and he says would have it any other way.
We spend more time together than most couples. He works from home so he can take care me, his disabled mother and of all the responsibilities we used to share in life. He does so without question, complaint, or passive aggressive undertone. He takes joy in being able to provide any needed comforts to manage the chronic, debilitating and declining pattern of my illness.
He tells me how precious, beautiful and intelligent I am everyday with sincerity.
When I freak out about the visibility of my invisible illness becoming more evident he looks to me with those loving eyes and says he’s never known a more beautiful sight than all that is me. If I need to rest, he is my reprieve. If I need to refocus, he grounds me back to my earth energy. If I need healing, he stays loyal by my side taking extra measures to ensure I can comfortably recuperate my losses. When I can’t speak my truth loud enough, he makes others listen closer. When I am strong enough to advocate for myself, he stands down but alert to my signal if needed.
He taught me how to be patient with myself and more directive in my parenting approach. He is a dad to my kids in ways their biological fathers lack, yet always supportive of the kids fostering healthy relationships with their other parents and step parents. He regards them in a neutrally positive manner for the sake of the kids but teaches what is right by parenting without anger, power struggles or demeaning statements.
His sensitivity and accommodating nature is always eager to help without question or the airs of inconvenience. He helps me dress and bathe on the days I am too fatigued to do it on my own. When my appetite finally kicks in at midnight, he makes me food even though he was already asleep. He listens intently to my many passionate ramblings. My mind is stimulated by our never ending discussions on all the strange things we love to talk about. We are a odd, wonderful pair, indeed!
He is an AMAZING person and our relationship is no less than magical, even in the mundane. Not to toot my own horn, but the gratitude in my heart for this human in my life is far greater than any Disney Princess™ dream come true. What we have is true kinship and camaraderie encapsulated in unconditional love and positive regard. I rest easy in life despite the storm of my illness knowing I have my Seth by my side, always.
We met while working children and adolescent acute psychiatric care. He was an aide possessing a great affinity for helping our autistic clients restabilize and establish routines that helped decrease meltdowns. He was excellent at his job and respectful to my position as a nurse. It was always a good day when Seth was on the schedule because I knew that things would go smoothly and if chaos did occur, it would be quickly managed without consequence.
He is like a natural, soothing balm in this abrasive, chemical laden world. One shift we worked a midnight together and talked about everything under the sun. We shared so many different stories and laughs. Sounds corny, but it was as if we’d always known one another. After that night we were good work friends. He was married, so the friendship kindled was purely platonic.
We hung out in the same social circles outside of work from time to time, so I got to know him and his wife better from several different perspectives. His caring, loyal nature was pure and sincere. I saw him get treated poorly in this relationship several times. His wife was very much a flirt and bordering inappropriate considering their mono-marriage. Although he never complained, there were times when the issues were blatantly obvious.
I respected the relationship and made no inappropriate moves or queries. His friendship was enough for me. We were both going through a hard time, often commiserating during 5 minute smoke breaks at work. My life was a mess financially and I made the mistake of moving back into my abusive ex-husband’s home. My health was declining rapidly due to enormous amounts of stress coming from every angle. Moving back in with my son’s father was an plan of desperation as my failing health made it impossible to make a sustainable income. He promised a “no pressure” environment for me to get better in and I stupidly accepted thinking maybe he could be a decent person. I soon found out how haphazard this solution was and began scrambling to find the nearest exit of the nightmare.
In the meantime, Seth (my hubs) was dealing with his own drama in life and love. He and his wife were expecting a baby. He was working tons of overtime to afford a new place, suitable for a newborn. It was nothing to see him work three 16 hour shifts in a row. She was in and out of the hospital frequently due to uncontrolled diabetes. Gentlemanly as always, he never went into discussing everything going on but didn’t take rocket science to understand her pregnancy was difficult and their marriage was all but happy.
She made it to the final trimester despite multiple admissions and follow up appointments along the way. Seth was verbalizing his excitement about the baby at work for the first time in the whole pregnancy. Things seemed to be going well for him and for that I was happy for my friend. Then suddenly, he was marked off the schedule at work for several weeks. No one really knew what happened but it didn’t take long for word to get around the ward.
Seth’s daughter Gabriella was stillborn. He was off the schedule on bereavement.
When I heard the news my heart shattered for their loss. All I could think about was the excitement in his words when he was talking about everything they bought for the nursery and it was really starting to seem so real. Life is unfair and there is no good reason to give when a cruel hand is dealt to a good person. I hold to the hope every situation is an opportunity for growth but at the end of the day, there’s no use in analyzing the reasons behind why bad things happen. It distracts from healthy grief.
He eventually came back to work but his whole energy body changed. I could see the sadness, grief and feelings of betrayal all around him as if they were badges on a vest. He was going through more than he would ever say but I would later find out during this time his wife cheated on him, videotaped it and left it on there bed in their apartment to see when he came home from work. She was going back and forth between truth and lies, leading his grieving heart on only to get money off him on payday and then disappear for 2 weeks again. He was spending a lot of time alone trying to process all the losses. Finally, when she came back Christmas day to get the presents he bought her, tell some more lies and disappear again the full reality of what was transpiring sunk in for him and he began to let go of that toxic relationship and refocus on rebuilding himself.
For months he’d suffered these assaults on his own. He appeared strong but I could see something tearing him up inside. He invited me over once during this time but I was dealing with so much myself and very sick on top of it. Surprisingly, he was understanding and we continued to chat at work during breaks and downtimes.
After working together for a string of unusually enjoyable midnight shifts, he invited me to his place afterwards to hang out. I was excited at another chance to get to know him better and accepted his invite. After that day we began hanging out one on one more often. It was easy to be together and it was cake to be happy. We synced like I’d never synced with another in life. We moved quickly from friends to roommates to a couple, officially. That was 7 and 1/2 years ago as I write this today.
A love like ours is special. We are a convoluted pair reverberating into the whole of our existence. I speak my feelings freely without fear of retribution. He encourages and funds my artistic and entrepreneurial endeavors. He seeks my counsel when perplexed with life’s crossroads.. He studies and savors my every move and lack thereof. I am the muse. He is my grand knight saving me from the pain of the past, holding me up as needed while the journey grows harrowing still.
He knows my deepest, darkest secrets; some of which are even hidden away from myself. I don’t even have to speak for him to instinctively elucidate my non-verbal gestures and respond accordingly. Our connection is psychic and beautiful. Since he came into my life, a safety and security blanketed all my experience from then on. No more endless journal entries on love unrequited with this one. When you’ve got the real deal, lamentations are no longer needed. Focus expands to include all of my interests rather than pensively trying to find my other half. With our very first kiss following the most heavenly energetic embrace I’ve ever experienced with another human being I knew I’d found exactly what I was looking for all my life.
While he adores me and is an impeccable partner, he is also a unique and talented individual bringing many interesting and entertaining components to our relationship. He possess musical genius, able to play any instrument well within a few seconds of trying for the first time. Stylistically, his singer/songwriter styles strikes a familiar chord in the collective unconsciousness, reminiscent of Jim Morrison. For him, music is not only a hobby but a passion driving him to create. While I know I am the love of his life, I know music comes in at a close second if not a tie. It is an endeavor I support wholeheartedly. I am proud of my hubs and his perseverance in his career as an independent musician, singer and songwriter.
In past projects he was always the drummer. In this new project he stepped out from his comfort zone behind the drums, taught himself to play the guitar and began singing the leads to his original songs. This move is something I encouraged him to do for many years before it came to fruition. All too often, he poured his heart and soul into the project of others. While a valiant endeavor but time would tell the truth over and over again: He needed to pour himself into his own passion projects if he was ever going to get where he wanted with his music.
Most the songs written for this project have a special meaning behind them. While some themes are drawn from our beliefs about consciousness, the Universe and the time/space continuum, others come from the difficulties in life we face both individually and as a collective. His knack for reducing complex thought processes down to simple, short descriptors in song travels the same vein of beauty as the intricacies of sacred geometry.
In one of his most personal songs, he took the intimate struggle with my Chronic Illness Life with Ehlers-Danlos Syndrome straight out of my head and applied it onto a beautifully blue melody crafted to hold my pain in esteem for the strength we cultivated within this experience. “Insides” is the personification of my chronic invisible illness experience in song form.
He began writing this song in the Fall of 2015 when my condition got much worse and my activity tolerance was reduced to spending my days in bed. My system collapsed in a very bad POTS flare in January 2016 initiating my formal POTS diagnosis and 3 weeks of IV nutrition due to vitamin and nutrient malabsorption. This was a hard time for us both. It was a difficult admission with many battles in self advocacy along the way. The discharge was bittersweet because I was not “fixed” but I was so ready to be home.
My hubs carried me into the house when we got home. I still couldn’t stand without syncope and my wheelchair wouldn’t be delivered until after the weekend. Once I settled in he asked me if I felt like hearing “my song.” I was tired and feeling disillusioned by the experience but the melody was welcome after spending three weeks in the overstimulating hospital environment.
I laid my head down while he strummed the acoustic, tuning it to the right key. It was so nice to be back in our bed watching my love play the guitar and sing. I’ll never tire of being his muse and music consultant. The difficulty of the 3-week separation from our usual life hit me with a sudden rush as he played and sang my song.
All of the homesickness internalized whilst coping with the hospitalization hit me full force. The weight of the words ascertained from my experience and transmuted into song crashed onto me like a tons of bricks. My heart split open as tears bubbled behind my eyes. I turned my face away from my hubs as he passionately sang out the lyrics. My tears burst out with sobs. He took my sorrow, grief and struggle to be myself in spite of the effects of my disease and memorialized the experience with a song. With great pleasure and pride, I present “Insides” by Saturns Cube:
We struggle with the challenges just like anyone else. My lovesupports me in ways I never thought I’d have to ask of another person. With his help, I am able to get more quality out of life, even with these new limitations. Chronic illness is awful. It is always okay to get in touch with that emotion. Nevertheless, we mustn’t dwell in the negative too long lest we forget there is still a life to lead beyond our illnesses. As the first installment of Thankful Thursdays, including my hubs only seems right because he is here with me in the trenches of illness helping to make my life a beautiful experience accommodating to my disease processes yet never lacking in luster, intrigue or necessity. I give my heart up in gratitude for his place in my heart and life.
The experience of chronic illness is difficult to say the least. Finding instances to give thanks for is draining when a disease process sucks all your energy reserves dry. Being grateful`often feels impossible but a conscious decision to actively recognize the positives within the negatives will reframe the experience, transcending it beyond the perpetual state of suffering chronic illness often creates.
Join me weekly for Thankful Thursdays as I focus on the realistic aspects of chronic illness life while giving thanks to the good fortune of a strong support system to help me make the best of this experience.