Hoping and Coping with Aplastic Anemia

Dearests,

I want to state something for the record – Disease Sucks.  A lot.  After my last few posts, I believe I might have misrepresented myself as a continually Zen person who takes everything in stride, thinks positive thoughts non-stop, makes lemonade from those darned lemons, and appreciates living in the moment.  That mindset is certainly a great long-term goal for contentment of the mind, body, and spirit, but I’ve found the journey towards acceptance of my illness to be anything but Zen.  I would love to be able to say that after my diagnosis I immediately began eating an organic, raw, alkaline diet, meditating for two hours a day, collecting crystals, and shopping at places like Chico’s while wearing a lot of turquoise and working on my pottery in Santa Fe, NM.  Our modern Western culture is constantly bombarding us (especially women) with the notion that those clichés lead to “inner peace” and my favorite ubiquitous phrase of the times, our “authentic selves.”  The truth is, I went into this illness kicking and screaming.  I fought and clawed and cried and raged and howled.  Because, as I mentioned above, Disease Sucks.

Aplastic Anemia Blog - Crystal

The key to happiness?

I can say with total confidence that I am in much better place emotionally than I was a month ago, and I am ten times better than I was a month before that.  The gradual acceptance of illness is extremely personal and it takes time.  There is no science for learning how to cope with a sudden life-changing event, but I think it’s helpful for other Aplastic Anemia Warriors and their friends and family to know where I’ve been and where I’m going from an emotional perspective.  I am still a work in progress, and I certainly have my dark days.  As this blog continues to grow and flourish, I may be posting from time to time from a place of uncertainty, fear, and sadness.  However, now that I’m nearly three months into my Dis-Ease, I feel less afraid, relatively calm, and ready to take on the next step.

I wasn’t always so tranquil.  On January 19th, 2011, when my doctor informed me that I would have to be immediately admitted to the hospital, my first response was to burst into tears.  I was terrified and extremely confused.  Surely this was some sort of mistake; a doctor making a mountain out of a molehill.  I called my boyfriend first, then one of my close friends who is no stranger to hospitalization after having her own struggles with disease.  Both came to the hospital to be with me, along with some other friends.  After calling my family to let them know where I was headed, I tried to brace myself for what I couldn’t imagine would be more than a few hours of observation.

My initial freak-out was fueled by more than just my fear of the unknown, but also by my fear of the known.  My mother died in July 2010 after a two-year battle with ovarian cancer.  Her death, still fresh in my mind and heart, had already created an ingrained fear in me of the body’s betrayal of itself.

Aplastic Anemia Blog - Denial

De-Nial

After the panic wore off, I went on a lovely trip down De-Nial.  I wasn’t sick.  This was a fluke.  My body had never failed me before, why would it start now?  All I needed was a few weeks and we would see a complete recovery.  What I was experiencing was a drug reaction, that’s all.  Surely my bone marrow would correct itself and I’d go back to my life.

As the days moved forward, it became abundantly clear that this condition, at least for the foreseeable future, was here to stay.  That’s when the anger set in.  And, boy, was I angry.  I had screaming fits in my apartment in which I raged against my body.  Tightening my hands into fists, I held them in front of me crying and screaming for answers.  I wanted to punish my body for betraying me this way.  I imagined punching walls, breaking glass, and hitting my head against the desk.  However, I knew enacting those behaviors would:  a) be psychotic, b) only hurt myself more in the long run and damage what was left of my health, and c) be psychotic.  I did end up breaking a perfectly harmless dustpan when I kicked it into the wall.  Poor little red plastic guy.  It never had a chance.

Enter God.  As a disclaimer, in no way do I intend to use this blog to expound upon my religious beliefs or lack thereof.  However, I think it’s important that I state my theological position so that readers can better understand my emotions in those first weeks post-diagnosis.  Now, God and I have a rather estranged relationship.  It’s not that I don’t think He (or something Divine) exists, I just don’t communicate on any regular basis with Him.  I’m an agnostic through and through, and I am not a believer in an interfering God.  In a nutshell, I believe a greater force arranged the board, but we are the ones who play the game.  I have been comfortable with these beliefs for most of my teen and adult life.  But illness and desperation have a way of bringing out the fair weather Christian/Jew/Muslim/Wiccan/etc. in many of us.  I found myself praying for the first time in years.  I apologized to God for only coming to Him in a moment of panic, but I really needed His help.  I told Him that I needed some assistance in healing.  I may have even told God that should I get better, I would start going to church again.  I wish I could say “that’s the moment God answered!” or “I had an epiphany!” but there was no response.  I did not have a religious experience, nor did I feel particularly calmed.  I felt guilty and I felt like a fraud.  I figured that if God does, in fact, exist in an interfering capacity and I’ve been wrong all these years, He wouldn’t help me out now just to teach me a lesson in faith.  That’s what I would do.

Well, howdy depression!  C’mon in!  I sat on the couch for hours and cried.  I stared at the walls or out the window feeling defective, lonely, and sad.  I felt jealous of all the “normal” people out in the world, living their lives, oblivious to the dangers around them.  I could see them laughing, smoking (ugh), living seemingly spoiled lives, while I was stuck at home or in the hospital wishing I could resume what had been a privileged, charmed life.  Upon my diagnosis I was told I needed to stop working, stop going out, stop exercising, stop driving, stop living in any way to which I was accustomed.  I mourned the loss of these activities, all of which I had taken for granted as they seemed so mundane.  All I wanted now was to have the mundane back.

Looking back on those first six to eight weeks, I understand now that what I was experiencing was a textbook case of grief.  Dr. Elisabeth Kübler-Ross in her 1969 book, On Death and Dying, introduced the fives stages of grief:  Denial, Anger, Bargaining, Depression, and Acceptance.  These steps are sometimes experienced out-of-order, and many people will move back and forth between two or more phases in what is called the “roller coaster” effect (returning to one or more several times before working it through).

Aplastic Anemia Blog - Monkey

If this picture does not illustrate acceptance, I have no idea what does.

I can’t say for sure when the acceptance kicked in, except it finally did.  I still occasionally experience the earlier four stages of grief – especially if there is bad news or a big change in my circumstances.  For instance, I went through each of the first four phases a few weeks ago when I realized I would most likely need a stem cell transplant.  I had three really bad days that mostly involved crying and depression.  The good news is that after I cried it out, the acceptance kicked back in.  Mourning periods have become of shorter duration and now that I’ve weathered the five stages more than once, I have a vocabulary of emotion that makes me less afraid of myself.  I know that I will push through the pain and come out the other side and be OK.

I am actually happy now.  No, really – I’m happy!  Could things be better?  Absolutely they could.  BUT – I have finally learned to do something that I could never do before I got sick – live for the day and not worry about the future.  Every day that I spend out in the world, away from the hospital is a good, good day.  I still get scared and sad, and I do, on occasion, worry about what might be coming down the line.  However, 90% of the time I am able to push those thoughts away and just appreciate the fact that I feel well and am surrounded by love.

I was asked by my social worker at the hospital if there is anything positive I can say about my illness.  Is there anything good that’s come from it so far.  The answer is yes.  Living for the day is certainly a great blessing, but the greatest gift I’ve received is a heightened awareness of how much my boyfriend, friends, and family truly care about me.  I continue to be astounded by the generosity of the people in my life, and how much they love me and I them.  If that’s not something for which to be grateful, I don’t know what is.

Coming next…. Rabbits!?  ATG and drug therapy.

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2 Comments (+add yours?)

  1. Bruce
    Apr 17, 2011 @ 16:27:36

    Wow! What a brave, moving, beautifully written account of your deepest emotions during this terribly unlucky trial you’ve been forced to face. Thanks so much for sharing and helping me so much better understand what you and other AA warriors are going through.

    Love, Bruce

    Reply

  2. Uncle Don of Alaska
    Sep 25, 2011 @ 14:54:04

    You are Blessed as You are Young and it seems this AA was found Early enough to be Treated and Cured. I am 65 and am on the Tail End of AA so there is No Cure through the Medical Community. I am told they can extend My Life but may not like living as Deformed as I may be returned. “LOL” I think Not.
    I am going to Beat this with all My Friends Support via Prayer and Jesus Christ standing Beside Me. I’m Not a Bible Thumper and would never suggest any direction for You as We, in America all have Choices. I will drop a Prayer in My Outbox for You as any Help is of Value. I am very Upbeat and Positive, Win or Loose I’m in Good Hand. Good Luck Little Lady and Be Well Uncle Don of Alaska

    Reply

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