Loss of identity . . . trying not to live as a victim

There is a inevitable course of loss when dealing with a terminal medical condition.  As your body goes through the physical stages of degradation your life as you know it follows.  Beyond the first major milestone of the label of being disabled or sick, comes the loss of your job. This is the first major life change that I am writing about, the loss of my job and in many respects my identity.  Your body can no longer support the needs of your will and your employer will move to relieve their company of it's connection to you.  Who wants to have a dying person around, just think of the insurance costs and the social price of watching someone go through pain in the office.  The office is for work not for sympathy.  So you get the call or the letter informing you that your services are no longer needed.  And you scurry to figure out how you will sustain health insurance to cover the need medical treatments that keep you alive and you start the unbelievably long and painful process of proving to a government analyst that you are indeed sick. And you try desperately not to allow the fear and worry about where will the money come from adversely effect your already precarious health.  In my case, stress aggravates my GI tract and starts the chain of events which puts me into the hospital with very dangerous intestinal blockages.  So I have to rise above or get taken under in the rip tide of how my body responds to stress.  But you do what you have to do, right. You fill out the applications, write the 78 page addendum to your medical history, you gather and submit 10 years worth of medical records. You carefully and methodically jump through every hoop and over every hurdle cause you have to, and there is no one there who will do it for you.  And then once you get some semblance of stably in place you take a breath and look around, and finally see the strange place you are now standing in.

For me that place was scarily unnerving. All my life up to this moment had been about the pursuit of dreams, and realizing potential.  Years of schooling, training, the endless slog of a budding artist, the ongoing slog of the established artist and the never-ending search for the next gig.  I had stacked up review, accolades, awards and all manner of resume boosters in the wake of my march towards the prize of becoming an actor and professor.  And when the full gorse of my medical condition reared it's ugly head in the second year of my graduate program, I virally willed myself over the finish line of graduation.  I then ran from the city where the medical trouble began in search of a teaching gig that could provide a stable income and allow me to continue the pursuit of the art.  But life had other ideas as the education job market plummeted in the wake of serious state budget cuts and I found myself in the midst of another medical tempest.  This storm took things to another level, closer to the end of my dream.  No more film or tv acting, for a while, I told myself, for a while.  I was sliding down the slope towards the abyss when out of the blue the miracle was offered. A change for a 'Hail Mary' surgery that could change things, or at least delay them.  So I took it, hook, line and really big sinker.  The surgery was as successful as it could have been and it bought me some years and it bought me more pain and considerable suffering, but none the less more years.  So what to do with this new time?  I stumbled into a job of prestige that was saving the world.

If I could not follow my dream at least I could save the world.  I threw myself into the work. fourteen, sixteen hours a day.  I liked the distraction.  The work distracted me from the pain, and the long hours caused more pain so I needed more distraction so I worked longer hours.  I must have been sight to my employers, this gung-ho naive soul charging off to her own destruction.  You need that, no problem, I'll make it happen was my motto. I did make it happen, every time.  I naively thought that was enough.  It wasn't, not for them and certainly not for me. My body was fighting it's own battle with my will.  All my life previously I had willed my self through every medical catastrophe.  I willed myself to stand and go on.  But now my body could not follow.  I started having moments of body failure.  I used all the medical tools available to prop myself up and keep going.  I worked 14 - 16 hour days with a PICC line in my arm.  I was still very efficient and capable even when running on only 4 of the 6 cylinders.  So I always got the job done. Until the last one, when my body spoke up in a way that my will could no longer ignore.  On a quiet Saturday in May last year, my body slipped into unconsciousness, my lungs stopped breathing and my heart stopped beating and my skin turned blue.  I  would have slipped all the way into death if not for my husband, who threw me to the ground and pounded on my chest to give me CPR until the ambulance came.  I woke up in the ambulance on the way to the hospital and remember flashes of the overhead lights, the blue metal of the door, the metallic taste in my mouth and the flurry of people screaming at me to, "stay with me."  Following that incident my doctor took me aside and had a "come to Jesus moment" about how my job would kill me within a year, and that she would not release me to return period.  I had a couple of previous medical leaves and each time my doctor warned me that my employment was killing me, that the stress of that job was exasserbating my condition dangerously. She had even gone so far to write, "please stop killing her" on one of my medical release forms.  So I took another medical leave thinking all the while that if I just had a week or so to rest I would be better and ready to go back.  But week after week nothing got better and it seemed only to get worse.  And weeks turned in to months and on the final day of my FMLA leave I got the official call stating I was terminated.  It was a very difficult blow.  I had given everything them everything, I had believed them when they said not to worry because they just wanted me to get well and come back.  It was a deep blow.

But I did not have time to wallow in the shock or sadness, I had to get all the ducks in the row to ensure I would have the necessary medical insurance to continue the treatments I needed to keep me alive. So no time to think or feel, just brush off and go head long into the process.  thank goodness for good friends who helped me keep everything together and get the writing done.  I can't really explain how difficult the process of applying for disability really is.  Just when you are in the middle of having to survive a near death experience and coming to terms with the idea that your life as you knew it is over and your future will consist of pain, medical treatments and more pain, you have to stop and write about it.  Not just write about what you are going through, and been through, but you have to prove that it is happening.  I am lucky I guess cause I have ten years of medical records, and I am unlucky because I have a condition that is rare and not familiar to most.

When you tell some one you have cancer, they have a picture in their mind of what that means.  They see the chemo treatment, the hairless, the body slowly wasting and they get that it is serious.  When you say you have mal-absorbtion they have no idea what that means. When you explain that your GI tract cannot absorb vitamins they still don't understand how that can be a big deal.  Even when you explain how low vitamin levels are fatal and cause every system of your body to fail, they still don't have a picture in their mind of what that means.  Vitamins are a chewable gummy bear and not a fatal blow.  Usually I have to get graphic, explaining that my low vitamin K means my blood stops clotting and I can bleed to death, or low iron and B12 cause my bone marrow to be destroyed and I stop making red blood cells, so eventually I die because my organs don't get oxygen.  This means when you are writing an explanation of why you are disabled you have to start at the very basic foundation and work up from there explaining why my bones hurt like late stage bone cancer, or how my anemia from lack of red blood cells means I have to get blood transfusion every 90 days.  What is almost laughable is that not only are my symptoms invisible to most, but the ones that are seen show up as "positive markers" in most people's minds. Losing weight for a woman is always a good thing.  When I drop 9-10lbs in a week it is the first sign of the dehydration that comes with the start of a bowel obstruction.  But most people would post that 9-10lb loss as a victory.  Now try to explain to someone who has never met you, how this medical condition they have never heard of has left you disabled. And in the process of explaining how you are disabled by this medical condition you have to prove that you are unable to work.  Anyone who knows me, and my work ethic can begin to understand how devastating it is to write a treatise on how you are unable to support yourself and need ongoing help.  It is a tough and emotionally draining thing to do.

But you do what you got to do, right.  So here I stand in the middle of a new void.  Where my identity is someone who is sick and dying.  There has to be power in that, if not for me than for others.  To stand firmly rooted in this new identity and embrace it, without fear.  To talk and write about this new identity in ways that might help other know how to act and react in a kinder way.  Somewhere in the back of my mind I hold onto the hope that something will change, some new medical development, some miracle will come along and give me the chance to be a whole person again, a person who contributes to society again.  I also hear the voices of the doctors telling me to allow myself the space and time to heal.  That I have never taken enough time to heal. That the new life I am beginning may turn out to be miraculous.  Maybe it might.  All I do know is that I have more to do here before I cross over and I am still alive after staring death in the face four times for a reason.   I might still have a chance at touching lives from this new identity.  This is where I am now, it is not going to change and it is up to me to make something of it.

So I will do what I gotta do, right.