Emotions of Chronic Illness

When someone is very, very ill, what feelings do they experience?  What are they going through?  A lot of people have asked me this, especially now.  If you haven't been following this blog, my father is presently engaged in a battle against cancer.  I wouldn't classify it as a "battle," per se, unless you'd say a game between the New York Yankees and the local pee wee baseball team is a "battle."  Or Muhammad Ali against, um, say, Teacher Man. The cancer is ravaging him, kicking his ass left right and sideways and soon, very, very soon, Dad will lose this battle and go Home. 

As I watch my father deal with his illness, and the various emotions that go with it, I can't help but think back to my own experiences with chronic disease.  Cancer and heart disease might not seem related, but chronic disease is chronic disease. You face Death.  You face what life looks like after your gone.  And cardiomyopathy can be a slow and hurtful death.  You can't walk.  Can't eat.  Can't sleep.  Work. Socialize. Talk.  If you're lucky, like me, a heart transplant whisks away from your first hand introduction to the Grim Reaper.  Many of my friends have not been so lucky.  But what did I experience? What did my compadres, who now have their new-to-them hearts, go through?

Wikipedia explains theories on grief -- the idea of facing Death -- thusly:

The Kübler-Ross model, commonly known as the five stages of grief, was first introduced by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.  It describes, in 5 discrete stages, a process by which people deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss. The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help frame and identify what we may be feeling. They are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. In addition to this, her book brought mainstream awareness to the sensitivity required for better treatment of individuals who are dealing with a fatal disease.

(footnotes omitted).

I remember the idea of Grief from, oddly enough, the Bar Exam.  This was well before I even heard the words "idiopathic viral myocarditis."  Together with some other sleep-starved law students, I comprised the following list:

The Five Stages of Bar Exam Grief

Denial:  There's plenty of time to study.
Anger: This THOUSAND dollar bar study course is teaching me JACK!
Bargaining: If I study all night, I can drink a beer tomorrow.  Maybe two.
Depression:  I....will...not....make...it...I..will...die...at...this...desk...
Acceptance:  I will pass. We are all going to pass.

Why I never applied this theory to my illness almost a decade later escapes me.  Humor was in short supply  at the time.  I think its important to realize the five stages of grief aren't linear, you don't "go through" denial and then "hit" anger and then proceed in a nice orderly fashion. Every one of us experiences things differently, both psychologically and physically.  Denial, for me, was thinking that if I did everything right, I would not need a heart transplant. (Or is that bargaining? I don't know)  Juice diets, the hyper-restriction of sodium, vitamins up the yinyang, numerous alternative therapies.  That lasted for a long, long time, almost until the day I got my biVAD. 

Was there anger?  Yes, yes, there was.  Why?  A strong-bodied person STRUCK DOWN in the prime of her life. Great career: Gone.  Chance to have kids: Gone.  I worked a HUNDRED hours a week and never had a problem.  It. Was. Not. Supposed. To. Happen. 

And then there was depression. And acceptance. I've never been able to figure out if I went through a bargaining stage.  Maybe it melded with denial.  I asked my shrink once why I kept working when it was obvious to everyone I shouldn't be hauling my ass out to deal with litigants.  Every. Single.  Day.  Why was I dragging my laundry down three flights of stairs (and back) instead of sending it out?  And, bless his heart, he said that if I quit work, or sent my laundry out, or did a myriad of things I didn't do but looking back, probably should have, it would signify something bigger to me.  Perhaps that I was actually sick. And that was part of the denial.

I'd be interested in hearing other people's experiences if you'd like to share them.