Friday, May 27, 2011

Quality of Life: It's All About Love

I read about how doctors and psychologists are trying to create tools to evaluate and measure Quality of Life in their patients. Reminded of the Disability Rights Movement's slogan, "Nothing about us without us," I set out to create a Quality of Life inventory that could be used for individuals about themselves.

While I used the framework put forward by The Quality of Life Research Unit at the University of Toronto, I soon departed from it. For personal use, measurements and scores are unnecessary.  Instead, it's more of a way of interviewing myself about my life: what's working and what I would like to see change.

When I reached for a simple definition of having quality in my life, I realized it meant answering "yes" (or at least "most of the time") to three questions:
  • Do I love myself?
  • Do I love my world?
  • Do I love my life?
So in the end it's all about love.

The (probably) final product is here as a Microsoft Word document and in PDF. Now I just need to integrate it into my life!

Friday, May 20, 2011

Quality of Life Inventory (first draft)

In our last episode, I got completely completely tangled in my response to the test from the The Quality of Life Research Unit at the University of Toronto. I could tell that what they are doing doesn't fit for me, but I didn't know why.  I suspected there were clues in the Serenity Prayer, but I was puzzled.

Things are clearer now.

Understanding My Frustration

A few investigations and experiences helped me understand where the University of Toronto's tool/model doesn't fit for me.
  • Beyond my control.  Armed with the Serenity Prayer, I went through the Quality of Life model and identified those things which I could change. They fell into the Psychological and Spiritual Being and Leisure and Growth becoming categories–those areas where I scored highest. For most other parts of the list, I have to have significant help from other people. For a few areas I have no control at all. Not coincidentally, those are the areas in which I scored lowest. I was frustrated because I felt chastised for things over which I had no control.
  • Focused on the future. I like the University of Toronto'sdefinition of quality of life: the degree to which a person enjoys the important possibilities of his or her life. I am okay with Being: (who one is) and Belonging (connecting with one's environment). They define Becoming as "achieving personal goals, hopes and aspirations." With that definition,  I will imagine the future, work toward it and evaluate whether I get what I want.  As a person with a progressive incurable illness, I need to stay rooted in Now.
  • Working from the outside. During the last week, I participated in a yoga class, where the teacher guided us to pay attention to our core (straight spine,supported belly, tightened Kegel muscles) before we began each posture. I participated in an adult Christian education class where we were reminded to start with our relationship to God and move from there into outward expressions of our faith. The two traditions agreed: start inward; move outward. I understand that scientists like to move the other direction, but I am practicing the art of living.

Proposing an Alternative

If I designed a tool to help me evaluate my quality of life, how would it look?

I like the University of Toronto's definition and their major categories. I would use more open ended, opinion questions. Unlike the UT, I am not trying to create a standardized tool.

Consider this:

BEING (who one is)

Physical:  What practices do I use in hygiene, exercise grooming and clothing? Are they contributing to my safety and health?
Psychological: What skills and processes do I use to adjust to change? Am I able to function cognitively to keep myself safe? How do I handle my unhelpful thoughts? How do I respond to the ups and downs of my emotions? How do I control my unhelpful impulses? 
Spiritual: What do I value? What do I believe? How do I make decisions about what actions to take?

BELONGING (connections to the environment)

Physical: Do I feel at home where I live (home, work, school, community)? Is there a special place I love and visit?
Social: Who are the important people in my life? Do I feel supported, enjoyed, and/or loved by and loving toward the people around me?
Community: Who are the important groups of people in my life? Do I feel included and part of the whole in the important groups in my life?

BECOMING (what keeps one going and growing)

Practical: What do I consider my basic needs (physical, social, psychological, spiritual) and how do I meet them?
Leisure: What activities in my life promote relaxation and joy?
Growth: How do my values and beliefs nurture me? How do I maintain or improve my knowledge and skills and adapt to change?

Part of 12-step living is to take an inventory. This is my first draft, but it seems this Quality of Life
Inventory might be a good tool for me to use as I move forward in my life.

I'll "take it" and see if I am left in a more resourceful place than I was last week.

Friday, May 13, 2011

That Serenity Thing Again... (Or maybe it's something else?)


When she read the first draft of my thesis, my graduate advisor noticed that I write to figure things out. "In your next draft, " she suggested, "take the final paragraph from each of these sections, put it as the first paragraph and write from there."

Since this is a blog, you are going to get the "figuring things out" pieces too.

How I Returned to the Concept of Serenity
  1. The Notion of Quality of Life
    I recently read an article about Quality of Life and MS research and care that started me on a binge of reading about quality of life.  I took a test from the The Quality of Life Research Unit at the University of Toronto.
    They define quality of life as "the degree to which a person enjoys the important possibilities of his or her life." They go on to divide it into domains (being, belonging and becoming) and subdomains.  "Quality of Life," they explain, "consists of the relative importance or meaning attached to each particular dimension and the extent of the person's enjoyment with respect to each dimension."
    I emerged from the test with a column of scores representing importance, another column representing satisfaction and a series of scores putting me in the positive or negative for each subdomain.
    While I loved reading how the researchers describe and measure Quality of Life, I was disconcerted when my test results showed my quality of life is only "adequate". My lowest scores are in the areas of physical being and belonging.My highest scores in the areas of spiritual being and growth becoming.
  2. The Problem

    "Disconcerted" is a polite way to put it. My quality of life scores were an integral part of a hissy fit that lasted several days.

    See, the problem with any sort of mapping of my life (this is where I am versus this is where I'd like to be) is that I have so little ability to take action to change things. There is very little I can do on my own and while I have a lot of emotional support (for which I thank you) there are few people available to help me (for instance) repair the walls of the living room. (Living space is part of physical belonging.)
 I emerged with a resolution to learn about contentment.


Contentment is being satisfied with what one is or has; not wanting more or anything else.

Contentment is a countercultural idea in my world. Nearly every message I see is about wanting more, wanting better, wanting different.

While I don't want to be part of that culture (and there I am wanting already), I also don't want to be apathetic. I don't want to be unresponsive to injustice or (more selfishly) to my actual needs.

Is there a middle ground between wanting and apathy?


Suddenly, in a blinding flash, I realize I have come around again to the Serenity Prayer:

God, grant me the serenity to
accept the things I cannot change
the courage to change the things I can
and the wisdom to know the difference

(Sheesh! Sometimes I work so hard to get to something so simple…)

I can tell I'm not done yet, but I'm onto something. Here are some choices:
  • stay tuned to find out what this is all about, or
  • if you think you know, tell me!




Friday, May 6, 2011

The Magic of Motion

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe,  heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.