Saturday, March 17, 2012

Forfeit: Playing With Less Than a Full Team

Thus far, in my posts, I have written about fun and interesting events that have and are happening in this nomadic lifestyle we live. I have had a break from really having to deal with the intensity and profound difficulty that I have living life with disabilities. On one hand, that I am disabled and have the disability benefits that I have, makes it possible for us to be doing what we are doing. On the other hand it creates daily, life altering challenges.

I have good health insurance.  I have a small, but dependable income every month. I am able to work if I feel well enough to do it. These are benefits that help us immensely and basically set the framework for Walt to be able to be a consultant.

The reason I have these benefits is that I have disabling illnesses. The Fibromyalgia and CFIDS (Chronic Fatigue/Immune Dysfunction Syndrome) bring intense pain and fatigue into my life that is usually attached to no cause in particular. The immune system dysfunction simply means that my body will typically overreact or underreact to illnesses.  I have an auto-immune platelet disorder that has caused two hemmorages in the past. I have hypoxemia - a pulmonary condition where my lungs don't saturate with oxygen properly at alitudes over 4800 ft. I have an irregular heartbeat and Type II Diabetes. I have Bipolar I disorder and PTSD. I have Tardive Dyskenesia, a permanent syndrome of involuntary movement caused by the drugs taken to treat mental illnesses. And I have the condition that originally was the basis for my Disability: Degenerative Disc Disease in my lower back and arthritis.

I am 51 years old and on my good days I feel pretty good for being 51. On my bad days I hope I don't have to keep living until I am 80 or so. I just can't imagine another 25 or 30 years like that.  The illnesses are like being on a physical and emotional roller coaster, exhausting in and of themselves, but together too much to cope with.

There are other metaphorical scenarios that people use or have develped that attempt to describe to others what it is like living with these challenges. I have developed what I call the "Forfeit Rule". based loosely on how a basketball team would function. It transfers from my experience playing basketball in high school and college, and pick up games later on.

Basically it goes like this: For those of you who don't know, a basketball team on the floor has 5 players. A team can still play with as few as 3 players. But if they only have 2, 1 or 0 players they forfeit the game and the other team automatically wins.

In my life, since my back injury, the whole team of 5 players never shows up.  The best that it gets is that 4 players show up. On those rare days I am like a woman possessed. I multi-task and move from task to task at lightening speed because I know that having the 4th player there is the exception and won't last.  I recognize when they are there and try to take full advantage of having access to that.

The average is 2 1/2 to 3 players. In my world you can play a game with 2 1/2 to 3 players. Those days I get dressed and chip away at the day one task at a time. With this number of players I can usually patch together something of a day that is somewhat functional. I do a pretty good job of basic self-care at this level - as far as dressing, showering, eating, but not so good with exercise and cleaning and such. If you ever see me out walking or exercising it means that 3 to 4 players showed up that day.

When only 1 player shows up I call a forfeit. I do not even try to do the day. I eat, rest, take my meds, take the dog out and rest. That is a forfeit day.

There are days when 0 players show up and those are the days I am in the hospital. More frequent than the average person, I would say, but still not my norm by any means.

I know that finding a way to write about how I cope with living with these illnesses is critically important to my own process of healing. I am still not certain that my perspective and experience around my health challenges is interesting or useful to anyone else but I know it is useful to me. It has become important to me that I show up in my world as the true me. I have come to realize that it serves to foster stigma when I keep my experiences to myself. I need to be validated by those important to me and yet I don't give them enough information to adequately do that.

I will continue practicing on those who love me. I hope you will hang with me as I cast about for the perfect balance. I want to share enough to foster understanding and empathy but not cause too much stress or discomfort. I am not on a crusade to teach people about the stigma of any of these illnesses. I am on a crusade to live my life to the absolute fullest within the parameters that I must work within.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.


  1. Love to you, my beautiful cousin. I am proud of your courage!

  2. Thank you Lynn! You have always done a great job of acknowledging and validating my struggles. I have appreciated it so much.