Nursing a hangover with fresh coconut juice on the beach of Ipanema, my girlfriends and I chatted about our night out and what is going on with our lives. At least, that is how I pictured my 35th birthday celebration. This, of course, did not happen.
Even though I turned 35 over a month ago, I could not write about it because I kept falling into a rabbit hole. To deal with lupus and focus on recovery, I decided to shelve all thoughts about my life until I was in some sort of remission. Not only were these thoughts too depressing but there was nothing I could do about it. This resolution was broken as my birthday approached and to date, I am having difficulty pushing back thoughts of how it was and how it could be.
In January 2011, when I went on maternity leave, I was a 7th year litigation associate at a big NYC law firm. I had an offer to teach first year writing at Columbia law school and to join an in-house team at a company. I was getting serious about my photography. My husband and I were enjoying our newlywed life in NYC and at our beach house in Shirley. Despite being diagnosed with lupus and being pregnant, I was still feeling healthy enough to work long hours and manage a decent social life. While lupus was slowly creeping into my life, I was still feeling good, living my life and planning a future.
Fast forward to the present time, August 2012, and my life is unrecognizable. I am only 35, but disabled and dependent on others for daily tasks. I haven't read a legal case nor picked up my camera for over a year and a half. I cannot be the kind of mother I want to be for my son. I had to give up living in NYC and am now living in Shirley full time. I live a rather solitary life. All dreams and aspirations about my career and life in general, gone.
As my recovery takes a long time and remission is yet out of my grasp, I have to face the fact that lupus is now a driving force in my life. And that perhaps, this detour is no longer a detour but a new road I must take. I keep hoping to "resume" my life -- to pick up where I left off back in January 2011 -- but this might never happen. At 35, I have to learn how to plan and live a whole new life. I have to say, I'm totally lost. I do not even know where to begin.
A doctor from one of the lupus articles I read recently explained that he "tell[s] patients and their loved ones that you need to let go of what was, and what could have been in order to enjoy what is and what still can be. Once you accept this, it often makes living with lupus a lot easier to handle." Meenaskshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University.
I cannot seem to get there. To accept that this is my life. In some ways, this denial can motivate me or it can throw me into a life of misery and longing. Perhaps I am not ready to accept my present life because I have not finished grieving for my losses. In any case, I am too sick to do anything now but hope that I am still recovering. I have to believe that I am not plateauing and that this will not be my permanent physical state. For now, I have again decided to focus on recovery and revisit rebuilding my life when I am better.
One step at a time.
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