In honor of International Zebra Day on January 28th we have decided to re-share this story by one of our members about her EDS/health journey. It's not easy, but luckily we aren't alone.
As I sit up in the bathtub at 5:00 am trying to keep my persistent and cutting cough far enough away from the rest of the sleeping house until my next nebulizer treatment, I find myself inspired by the quiet to write down some of my thoughts. I was discharged from the hospital twenty two hours ago, to be exact, with pneumonia and parainfluenza, a virus that usually affects children. We thought I was just having another viral triggered asthma exacerbation, we were wrong. It’s the third in the last five months I have struggled to inhale and exhale while simply sitting dowm. Luckily my doctor insisted on sending me in. Apparently, I have become too passive about not being able to breathe. My arterial blood gas was 61% in the ER, but my pulse ox was 93%. I stopped trying to make sense of vital signs long ago. I just need to get through tonight. I started wasting time listening to Adele and scrolling down my Facebook newsfeed to catch up with the world I disconnected with a few days ago. Half way through Hello, I saw a post that got me thinking about a question I received last night in the hospital from a well meaning nurse. “How do you remain so positive?” I have come to resent that question and the equally dreaded “How do you do it?” There is no polite and accurate answer to these questions. So I usually say something like I am grateful to have a good community and purpose. That is kind of vague but is usually enough to satisfy the curiosity of those who know the extent of my health issues.
I have long list of medical issues, many related to having a connective tissue disorder. Guess I just hit the genetic lottery. As a middle aged woman who occasionally passes for her late 30’s, with good makeup and bad lighting, I live in the body of a 70 year old. Various parts of my spine have already been broken, dislocated, untethered and fused. My skull got in on the action, I also have a metal plate that anchors the rods to stabilize my cervical vertebrae where my well rounded, amazingly sexy posterior fossa once was. I call it my cervical bling. I have never lived a lifestyle to explain these injuries. What may be a health hiccup for a friend can easily become a serious incident for me. Instead of a face lift in my 40's, I got a brain lift. A bad combination of backless shoes and a mislayed slab of concrete ended in three major neurosurgeries in 6 months. I went from being a seasoned nurse in her dream job, small business owner, mother of 3, wife and caregiver to my mom to being totally disabled almost overnight. My health issues had been consistent but manageable until the day a simple accident caused them to spiral out of control.
Within months of this fateful fall I started to become boxed in...into my body, into my bed, boxed in by diagnosis I had never heard of, boxed in to a poor prognosis, boxed into the idea that I would fix myself, boxed into my thoughts on what it meant to be disabled, boxed into this new reality, all because I fell one day and face planted on concrete. Could this be true? I found it horrible and totally unacceptable in every way. I had to grieve. The worst part of it was the pity, from the doctors, from our friends and just like that, was this was my new identity? Someone to feel sorry for? Someone for the other moms to gossip about in the schoolyard? Someone for people to judge and speculate about? I have always been known as hardworking, interesting, resourceful, witty, smart, the ringleader in my social circle who is self made and overcame immense adversity her entire life, often described as resilient. I was just expected to accept this new reality laying down, literally? NO. That is not who I am. I was miserable. I tried to play the spoon rationing game, lay down, do less, etc... My pain got worse, symptoms flared, I subluxed more and started feeling overwhelmed with no tangible end in site.
I spent the majority of a year in my home 90% of my outings were to specialists, many out of state. We were now financially boxed in. I couldn’t make it to school functions for my kids, more boxes, Boxes inside of boxes that were nestled into bigger boxes. I was watching my life and my spirit being shrunk down into a box that was supposed to be manageable, per other people that had no clue how to live with my challenges. I felt mentally and physically worse than I was willing to accept long term. My only hope was to start breaking down the boxes. I had to grieve my old way of life, be angry, be sad, deal with things pragmatically, take accountability for creating a better outcome than the one I was told to accept and find a way to redefine myself within a box I COULD LIVE WITH, my box, with hope, a clear top for sunshine to come in, windows for fresh air, probably turquoise, with zebra striped doors, air conditioning, a grill and a patio for family dinners, a pool, a fire pit for chilly girls nights with friends and a purpose for my life. My box grow, a few feet at a time, it would allow me to be independent, an engaged wife and mother and use my professional skills, in a way my body could manage. I realized would require a slower speed or on a smaller scale than before but I could live with that. I could still be me, a modified version on me in a fabulous box that I designed.
I started focusing on strengthening myself physically and mentally, not my diagnosis list and the doctors. Of course I was responsible and continued to see my providers and take my prescriptions. I also read a lot and challenged them to want more for me, I brought them along with me on my journey. I questioned many of the limits and cultural norms in our chronic illness communities to see if I could find a happy medium and find a life that actually inspired me to do more than just wait for the next doctor's appointment. My box expanded a little. It was a difficult few years of physical therapy, aqua therapy. medication trials and doctors visits than I can even count, diet changes, lifestyle changes, a lot of volunteer work from home and then I tip toed back to work, in a modified role as a nurse a few hours a week. Returning to work was so scary and mentally freeing for me. No one wanted me to do it, especially my husband. He thought I may hurt myself or would push myself too hard. I promised to behave. He was not thrilled, but knew he was fighting a losing battle. I was knocking down boxes, too many boxes for his comfort. They provided a false sense of safety and control. Boxes tended to make others safe but they were suffocating me. It was something I had to do for myself. The mental effect of living in boxes has a way of creeping into your thought process, your relationships, and your self image. Even your perception can become skewed, in so many ways because your vision is filtered by layers of boxes.
Returning to work in any way possible was scary, exciting and incredibly hard for me. It also made me stronger and allowed me to reconnect with parts of myself that I missed so desperately. I was not the sick girl at work, I was just an employee. They knew I was disabled and worked with me to find a position that I could do well and safely.
My friends thought I was crazy. Why would you work when you don’t have to? They still did not get it. I needed it, I needed to see what my limitations actually were.
I needed some degree of my independence back. I had never been financially dependent on anyone, since I was 16 years old. I found it unsettling to be physically and financially dependent on my husband, maybe more than I should have. I did not have any family within a 1,000 mile radius, no local safety net. I worried about the stress all of this put on my marriage. I would hear of another divorce in a support group and would start thinking, what if this is all too much? What if he bails? It happens all the time. What will happen to me? I need to have a way to take care of myself financially.
Lastly, I was very aware that my kids would use me as a role model of how to live with illness. It broke my heart that, especially my youngest would possibly remember me as “sick” more than all of the other parts of me. He was only five when I became too ill to "just push through". I want them to fight for themselves to have a full life, despite any challenges they may face in the future. I had to walk the walk, even if it was the hardest thing I had ever done.
I continue to fight every day for the fullest, love filled, purposeful life I can have despite this body that still tries to box me in. You win some, you lose some. I have surpassed all predicted goals set by my medical team and even those I set myself. Despite multiple chronic conditions, regular setbacks and constant body drama I am LIVING. My custom box has expanded so much in the last two years that the walls have lost their form, they have become transparent and fluid, they have transformed and allowed me to travel out of the country twice in the last sixteen months for family vacations. Take a very intense four day professional trip. Drive cross country alone, chaperone my youngest son’s field trip last year and coach his basketball team this year. I also was able to apartment hunt and drive the Uhaul truck to move my oldest son into his first apartment. I somehow even managed to inspire my daughter to change her major to something in the non-profit or public health field and was able to advise her on her projects as a board member in her student organization. I volunteer at church and assist with fundraising projects, when I am able. I have finally planted the hydrangea bushes I have always wanted, right near my side door where I see them everyday. I have found myself again. I am still sick, I am still struggling to control the parts of my illness which I am able to impact, accept what I cannot change and enjoy every day that I am able. I would say I now live in a bubble, not a box and I roll with this crazy life.