Thursday, April 28, 2011

Return to Joy (Rededication)

... And they lived happily ever after?

Much as I like fairytales, there is a reason we tell them to children and not adults. By the time we are grown, we know that happiness doesn't last.

I recently went to a performance of Fidgety Fairy Tales.  This group (which I highly recommend) takes fairytales, gives the main character a mental health disorder and uses theater to educate and raise awareness. I noticed their tales do not end happily ever after, but rather with everyonehero, family and friendsimproving their abilities to cope.

See, in usual fairytales, the main character gets what he or she wants and then lives happily ever after. Those of us who live with chronic conditions often can't get what we want.

Happily ever after just isn't real life.

Choosing Happiness

When I was in grad school, I discovered Barry Neil Kaufman's book, Happiness is a Choice, and his work with The Option Institute. I had been living with chronic illness for a dozen years and living with the idea that my happiness depended on external circumstances (or possibly on doing good things for others) since I was born. The idea that I could choose to be happy was revolutionary to me.

When you think about it, whenever we are happy we are making an unconscious choice. This blog post is a day early because tomorrow we are heading off for my niece's wedding.  We will probably be around a lot of happy people. On the other hand, the opportunity to be unhappy will be there. The wedding is in a park. Perhaps it will rain. Perhaps it will hail. There is a building across the street reserved for the reception and the wedding can take place there if need be. If the weather is inclement, there will probably be people who choose to be unhappy about it.

My view is that while the internal gut-shift from happy to unhappy is instinctive, the decision to stay there and wallow in it can be conscious. The moment I realize that I am unhappy is the moment my mood becomes a choice.

My physical symptoms and disabilities are constantly inviting me to frustration. I get angry, fearful and sad about what I can't do or how hard it is for me to do the things I can do. Sometimes I entertain those feelings for a while. (I'll pause for a moment here to enjoy that phrase: to picture me finding sadness a comfy chair, a blankie, a warm drink. Make it comfortable and invite it to stay for a while.)

Then there is a shift and I realize what's going on and I have two choices to make: what am I going to do about it and how am I going to feel about it?

The answer to the "do" question is a combination of action (change position, take medication, get some help, etc.) and the reconciliation I wrote about last week: identifying what's different and making peace with it.

The answer to the "feel" question is to return to joy.

Outward and Inward

I checked with the dictionary. It uses joy to define happiness and vice versa. I was reaching for some kind of subtle distinction between the two when I realized that I wanted to make a point about exterior versus interior.

I can be happy/joyful without it being obvious. I don't have to be grinning and laughing. I do need to be honest with myself, though. "Fake it till you make it" works for happiness to an extent. If I make my face into a smile and follow it with happy thoughts that lead to a joyful mood, that works. If I make my face into a smile and continue to think sad or angry thoughts, that's fakery.

Sad and angry thoughts have their time and place. I find it best to feel what I'm feeling.

Part of my journey, though, is to recognize and return to the things that bring me happiness.

Lifting the little weights I use did not go well last night.  Today the sky is beautiful with streaky, heavy gray clouds. I don't want to let my disappointment about my weakness yesterday keep me from noticing beauty today.

Rededicating myself to joyful living is one of the practices I choose to help me live with chronic illness.

Friday, April 22, 2011

Reconciliation and my body

This week I started using a key turner to help me open the front door. Like most tools I use, I'm experimenting. I will know in a few weeks if it makes things easier.
I am constantly reconciling with and to changes in my body. has this to say about reconcile:
  1. to cause (a person) to accept or be resigned to something not desired: He was reconciled to his fate.
  2. to win over to friendliness; cause to become amicable: to reconcile hostile persons.
  3. to compose or settle (a quarrel, dispute, etc.).
  4. to bring into agreement or harmony; make compatible or consistent: to reconcile differing statements; to reconcile accounts.
  5. to reconsecrate (a desecrated church, cemetery, etc.).
  6. to restore (an excommunicate or penitent) to communion in a church.
Those are all aspects of what I do with my body over and over again as I live with chronic illness.


After my diagnosis, it was easy to understand the disease as the enemy and my body as my ally in the fight. As my body became more and more affected by the disease, the distinction blurred. I often find myself becoming angry at my body. It won't do what I ask it to do. It doesn't recover the way I expect it to recover. It gets in the way of what I want.

My mistake is obvious: making the body Other. I need to remember that "we" are one organism. Even the disease is "us." It is so easy for me to slip into a me versus the world mentality, but that is my imagination trying to make sense of an unlimited universe.

My favorite meaning of reconciliation is "to bring into harmony." That is also a meaning of healing.


When my body changes, when it stops working the way it used to and does something differently, it's easy for me to see it as wrong and broken. One of our culture's models for our bodies is to consider them machines.  That's been a very useful model; we have learned to make repairs. It's not so useful when I expect my body to work the way yours does and consider the majority of bodies normal and correct and mine, because it is abnormal, of less value.

Value judgments get in the way of experiencing what is.


My goal is wholeness and my practice with my body is to overcome perceptions of separation and brokenness.

Things to believe:
  • body, mind and spirit are convenient labels but aren't The Truth
  • wanting, anger and disappointment are natural and should be expected, but not encouraged
  • wholeness is already present
Things to do:
  • pay attention to and experience what is (breathe, move, feel, think, connect)
  • build strength (exercise, build relationships, learn)
  • accommodate needs (rest, use assistive devices, expert advice)
To and With

 I resist the idea of "reconciling to my fate." It sounds like giving up. It speaks of resignation. At the same time, I do need to accept the reality of the situation. A physical therapist once told me, "it's not that you're not trying; the nerve signals just aren't there."  I need to reconcile myself to the idea that no amount of exercise will enable me to walk again. 
Reconciling with is a happier task. Friendliness, composure, agreement, restoration, consecration...Those are all lovely words to wrap around my experience.
Reconciling myself to and with my body (pardon the verbal convenience of the separation) is a necessary part of being a living sentient organism. Living with chronic illness brings it forward, but it's there in the background for all of us. Reconciliation is part of relationship and good relationships lead to celebration.
There is a truly joyful task: celebrate all of who you are body-mind-spirit. Celebrate life!

Friday, April 15, 2011

Being Sick: How Surrender becomes Incubation

"Sometimes I have to just give in and be sick," I regularly tell people. They squirm in their seats. We don't like being sick. We especially don't like surrendering to being sick. This the 21st century, for heavens sake. We should be stronger-smarter-better by now.

Being ill is an invitation to wholeness. When we get attached to being healthy active go-getters we lose the balance that makes for a full life.

We need times of rest and repose, times to watch sunlight move across the room, times to pay attention to our souls. Illness invites us into such times.

Like most people, I don't enter a period of illness willingly. When I "feel like I'm coming down with something," I go into defensive mode. I go to bed early. I take extra vitamins and supplements. When it's obvious I'm getting sick, I turn to stubborn refusal:

But sometimes it does.

As I lighten my schedule, make my apologies and buy my supplies (those three-box packs of tissues are genius), I throw a little internal tantrum. Why now? Can't it wait until there's a clear spot on my calendar?

Whether I'm ready or not, illness descends. My to-do list has just one thing on it: to give myself  "what is necessary for life, health, and growth." (The definition of nourish.)

Part One: Survival and Pablum*

There are times (migraines spring to mind) when the illness is all-consuming. I am not doing anything but existing.  Whatever mental or physical energy I have, I use it to provide myself with the most basic nourishment.
  1. Rest. Sometimes discomfort disrupts sleep, but sick and tired bodies need rest.
  2. Eat and drink what will help. Take a "long view" on this one. Chocolate may appeal to the part of one that's feeling hard done by, but broth is often a better choice. Ideally, find substances that feed both body and soul.
  3. Medicate responsibly. There's a sweet spot between resisting medication completely and going overboard.Get professional advice and dose with caution.
Once I've lived through the tough part and start feeling some energy, I begin setting the stage for my return to activity. 

Part Two: Introducing Solids

My agenda is still to nourish myself, but now I can broaden my diet. Rather than just surviving, I want to build my strength. Rather than just eating and drinking, I can return to exploring the world with all my senses.
  1. Contemplate beauty. Bring beautiful sights, smells, sounds, textures, tastes and ideas close.
  2. Experience caring. Connect with a friend and experience the wonderful give-and-get of love.
  3. Laugh. Move lymph. Oxygenate organs. Release serotonin and interleukins. Practice here.
I often refer to the "being sick"part of life as incubation because the time of retreat and replenishment results in the creation of something new. Even if I can return to full physical function, I have to integrate the experience of being ill into my life. I am not the same person I would be if the illness had not occurred.

Healing is a natural result of rest and nourishment. When I've had enough of both, life calls me forward again into the world.

Friday, April 8, 2011

When Change Smacks You Upside the Head

I was "out" with a bad migraine Sunday through Tuesday of this week. By out, I mean the pain was so intense I couldn't do or think. I merely survived. Though I "resumed normal activity" on Wednesday, I am still recovering.

I was planning to write about Overwhelm this week anyway; the migraine provided a refresher course.

I love change. I love the sense of expansive possibility it brings with it. I love the excitement and variety it adds to my life. I love the illusion of progress I get because things are different now.

That's all true for changes I choose.  It's even partly true for some changes that are thrust upon me.

Then there are the bad news changes: friends that leave, disasters, accidents, diagnoses, migraines.Those changes, I don't love. They send me spinning.

First, there's the actual factual change. Something in my environment is different. My head hurts and I feel nauseous. I'm not used to it. It puts me off balance.

Then, there are my thoughts about the change. My wonderful human brain thinks about the past, the present and the future. In the present, I have judgments about whether the differences are good or bad. (Pain + nausea = bad.) Looking back, I have ideas about what caused the changes or what I could've done to prevent them. (Maybe that piece of chocolate was the culprit. Maybe I tried to do too much.) Looking ahead, I project how these changes will affect my life in the future. (I have a speaking gig the first weekend of next month.What if I have another migraine then? The horror!)

Thoughts beget feelings. I feel guilty and/or sad about what I should have done. I feel angry about any "badness" I identified. I feel fearful about what could happen in the future.

From one change has come weighty mental and emotional activity.  To it, I add one more pair: I am exhausted and overwhelmed.

In my experience, this is the normal and natural road I travel. In my younger days, I beat myself up for not being able to avoid the thoughts and feelings. It seemed I should be able to choose not to have them.

If I'm lucky, I am evolving in that direction.

In the meantime, I try to catch the unhelpful thoughts when they begin. I try to understand the unhelpful emotions as natural descendents of the unhelpful thoughts. I try to pull myself back to the here and now and return to the facts.

Last Monday, I told myself: "the back of my head really hurts and I'm retching.  It doesn't mean anything about my character or about my future. Right now, I am resting."

Calling this part of my experience "overwhelm" is helpful for me because it reminds me that I am not in control and don't need to try to be. My primary job during such times is to take care of myself and let the sensations, thoughts and feelings, come and go without embellishment.

Friday, April 1, 2011

Creating Your Own World

"You paint your heaven or your hell and in you go." —Nikos Kazantzakis
"I reject your reality and substitute my own." —Adam Savage

One of the things I find spectacular about human beings is our insistence on making meaning. We make models of reality to help us understand and move through our lives. These mental models can make the world a frightening place and stifle us or they can fill the world with possibilities and excite us.

I need a model of chronic illness that allows me to endure—NO! to thrive within—its ups and downs.

A model of triumphant recovery over illness won't do it (because there is no cure).

A model of graceful surrender to a fatal illness won't do it (because I won't die from it).

The creative process includes within it the elements I find in my own life:
  • moments of baffling uncertainty
  • times of "stuckness" that I can't seem to overcome
  • alternating movements of failure and acceptance
  • rediscovering and sharing wholeness and joy
Since I have started to believe that I am participating in a creative process, my life has gotten easier. The dark clouds pass more quickly and I weather them more gracefully. I know what to do when things get tough. I notice and appreciate the good times.

It doesn't matter if I'm right.What matters is whether I am able to live resourcefully and compassionately within the model.

If I use my imagination to create a world in which I can flourish, regardless of the state of my health and my body, then I am free.

(Watch Pure Imagination from the 1971 film Willy Wonka & the Chocolate Factory.)