Yesterday I broke down - ugly tears - in my doctor's office. It happens, and I really didn't even know why at the time...I was just so overwhelmed and the fact that my exodus from Phoenix is rapidly approaching put me over the edge. But while my head was buried in my hands, my back violently moving up and down as I tried not to hyperventilate my doctor patiently waiting, and asking what I was feeling behind the obvious - and that's when it became more clear - in the past I have been focused on what I have missed out on over the last few years. But in that moment it came into focus, the subtle shift was this illness has hijacked my identity - an identity i was proud of - an identity that i fear is forever out of reach.
I recently removed a post briefly describing the loneliness this illness has brought with it - every time I realized that was out in cyber-space it made me cringe - not that it wasn't the truth, but it seemed to not accurately describe what I was feeling - and after the breakdown in the office - that evening I realized the aloneness stemmed from this identity theft. This illness effects you physically but it takes a mental toll. Your brain is often foggy, its hard to concentrate, so I often no longer feel present even when I am interacting with others. The holiday's and special occasions are the worst, and they used to be my greatest joy. Give me a wedding any day - I loved the socializing, the dancing, the fun. Now, all of those joyous events are events to manage, to use all my energy to act as if I feel fine when I am often struggling to stay on my feet for extended periods of time. I will forever be grateful that this illness did not take its massive hold in my twenties - because I loved my twenties and all the celebratory events that it contained. When I first moved to Phoenix, shortly after I arrived my good friends were getting married in Michigan. I flew back to Milwaukee, the next morning drove solo the six hours to the other side of Lake Michigan. The car ride filled a McDonald's stop (a food I haven't touched in years), cell phone calls home touching base on my progress and the same Van Morrison CD on repeat. I got to the hotel an hour before the wedding, got myself together and full of energy headed off and laughed, drank and danced all evening long- unlike Cinderella the clock never struck midnight and took it all away. That event seems like a mirage, and most events now feel like the Fairy Godmother is lurking over me, reminding me that the clock will strike at any moment in time and with a wave of that wand she has the power to strike and poof the joy is gone.
Without presenting my CV, let's just say, my life before this illness, was bursting with commitments and obligations that I loved. I loved feeling useful, being helpful, being dependable, being present. In my mind I am none of those things anymore and it honestly breaks my heart and chips away at my soul each and every day. I didn't do these things for any reward, it was my natural state, it was how I found joy. And as family and friends have entered their 4th decade their lives are full - full of their children's activities, new friends, careers that bring with it fulfillment and another social circle, my life seems to be closing in on me - and its a loneliness, disappointment, and void that is hard to describe.
I have so many blessings, those blessings often become a cruel irony, the perpetual carrot on the string that the horse will never chew. I would be looking forward to taking my niece to French classes on the East side - I would be traveling - I would be working - I would have seen my good friend's new home - I would have traveled to Denver to visit numerous friends that have relocated there - I would be going out to dinner - I would perhaps be planning another trip to France to celebrate my 40th birthday - the list goes on and on and on....but the most important thing is I would have the freedom to help my friends and family the way I used to. I would host the Holidays rather than the effort it requires now to just show up. I would feel like myself, more importantly I would be myself.
This illness has come to define me, and today as my hands sweated, the first vein on my left arm infiltrated as the "clean" blood was re-entering my body, not enough time to move chairs, so I was doing a yoga twist to give my right arm, I tried not to cry - I really did - took deep breathes - told myself to buck up and stop being a baby - and this whole thing seems like a dream. When the treatment finished I was "brave" and looked at the remnants of my blood that remained in the glass "jar" (okay i can't think of the term) but anyways, the closed container that housed the 1/25 th of my blood prior to going through the glass slide that houses the UV filter and what was left was as I said, "disgusting". These black globs of debris covered the inside of the container - the debris of bacteria and viruses - the result of die off. If I hadn't seen my blood go through this process so many times I wouldn't appreciate the distinction between clean and dirty blood. Ahh a visual picture of my insides that appropriately matched how I felt.
I haven't felt very strong, brave, resilient the past week - but this treatment forced me to see the reality of what my body is dealing with, and suddenly I didn't feel like I needed to convince myself that I am sick - I try and forget - I try and pretend - but reality has come crashing down again - and I am doing my best for the day I wake up and the first thought in my bruised feeling body isn't - "how am i going to make it through this day."
My doctor, the kind soul she is, reminds me constantly this has been a brutal visit - every day you are working - your body is fighting and that is the good sign - you are responding rather than existing in the state of stasis. I just want my identity back - my 40th birthday is one month and approximately 10 days away - and there will be no greater gift than this invisible thief apprehended and my identity restored. May anyone out there suffering from a chronic illness find peace.
