Baby Steps

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.
Alice: ...So long as I get somewhere.
The Cheshire Cat: Oh, you're sure to do that, if only you walk long enough.”
-Lewis Carroll, Alice in Wonderland

We want to get better. We want to go back to our pre-illness self and our pre-illness life. We want to go back to a time when our days were not filled with pills and doctors’ appointments, procedures and blood draws. Since we can’t go back, the only way to go is forward. But where are we going? We are going to do whatever we need to do to live the best life possible. We are going to be sick well.

Goals are great. Goals mean that we have hope. When chronic illness comes to visit, we have a choice. We can hold onto our old goals or we can make new goals. In 2003, the loftiest goal I could imagine was getting out of my pajamas every day or at least changing to clean pajamas by dinner time. I learned that to achieve the goal of getting out of my pajamas, I needed to take a series of small steps, resting after each one. Decide what to wear. Rest. Find the clothes. Rest. Take a shower. Taking a shower was huge. I had to rest for at least an hour. Get dressed. Rest. Be proud of myself. I did it! The first step is always getting started. Every small triumph inspires us to go on.

What new goals do you have now that you have chronic illness? Pick one goal that is achievable. Make it a small goal. Make a list of all the steps you must take to get to the goal. Go back over the list and break each step into smaller steps. Work on just that one goal, one tiny step at a time. Setbacks are not failures. If you have a setback ask yourself what you learned. Then carry on. Give yourself permission to keep on trying. Life with chronic illness is about progress, not perfection.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness Release date April 1, 2018.

I Know Someone

She sat next to me in the waiting room at the doctor’s office. It was my first visit since I was diagnosed in the hospital. I was still numb with shock. She said, “I had a friend who had your disease. Her organs shut down one by one. It was such a horrible death. “ I changed the subject. She recounted more grizzly details. I said nothing. I pictured myself stuffing a sock in her mouth.

Why do people say such things? Why didn’t I ask her to stop immediately? How can I handle this differently the next time?

Giving Up (studies in learned helplessness)

I am rereading Ellen J. Langer's wonderful book, Counterclockwise: Mindful Health and the P0wer of Possibility. In one chapter, she writes about studies in learned helplessness.

Researchers took dogs and put them in harnesses. The control group was simply harnessed and later released. The other two groups were harnessed and subjected to electric shocks. One of those groups could stop the shocks by stepping on a lever, the other group had no control. After the experiment, the group that had control recovered quickly, while the other group exhibited symptoms similar to chronic clinical depression.

Those same groups of dogs were put into a shuttle box apparatus where they could escape the shocks if they jumped over a small partition. For the most part, the last group of dogs who had previously "learned" that they had no control over their fate, just lay down and passively whined. They didn't even try to escape the shocks.

Another study involved rats. Rats were restrained until they gave up struggling and went limp. Those rats and a control group that had not been restrained were put in ice water. The restrained rats didn't even try to swim. The rats that had not been restrained, swam for hours.

I felt that way in October of 2003. I had learned helplessness. It was actually a spark of anger at a psychiatrist that drove me to the library to learn how to live well with chronic illness. (Truth be told, it was less of a spark and more of an explosion!)

Langer goes on to write, "Why try to help ourselves if we have a disease that's uncontrollable? There wouldn't be much point. Remember, virtually every disease medicine has conqured was at one time thought to be uncontrollable, and again, it took someone to think it indeterminate to find out how to conquer it."

If I had a dollar for every lupus (or substitute any other chronic disease) patient that tells me, “I’m not going to take medication. I hate pills. I am going to go organic (or green or natural),” I would be a rich woman today. I have to admit here, that was my first reaction, too! I did take my medication. 14 days in the hospital will scare you into doing that. But I dug out my copy of Nutritional Healing, certain that I would find the answer. The answer wasn’t there.

Avoiding chemicals in our food makes good sense. Our bodies, healthy or not, don’t need the added burden of having to deal with toxins. Most of us know that the plants we eat contain pesticides. Some of us realize that meat, chicken, eggs and dairy also contain growth hormones and antibiotics. Even fish are farmed these days. They too are given antibiotics. The ones that are caught in the wild will also carry pollution chemicals and things like mercury. An organic vegetarian diet eliminates a lot of the body burden of these chemicals. Those same patients who say they are “going natural” call six months later wondering why they aren’t cured. Could there be more to the story?

The same patient, who does not want to take drugs, does not realize that there are drugs in our water. Viagra, xanax, Prozac, hormones, antibiotics…you name it, it’s in the water. Discarded medications can end up in our water, but they are also excreted by people who take the drugs. You should know that while tap water in America is checked regularly for safety, bottled water does not have to meet the same standards. Yes, your bottled water could actually be worse. Check out www.ewg.org for more information. I have actually had several people tell me that drinking juice, soda, beer, or wine would protect them from the water!

Eating and drinking are not the only ways that chemicals get into our systems. We breathe in chemicals from household cleaners, synthetics (plastic, carpeting, fire retardant on clothes, paint, furniture, etc.), hygiene products, air fresheners, industrial pollution, and more. We absorb chemicals through our skin. Think about it…we have hormone patches, nicotine patches, and pain patches that deliver a slow and steady stream of medication through the skin. When we bathe, we are absorbing chlorine and other chemicals from the water. Body washes, hair products, lotions, cosmetics and other hygiene products contain endocrine disruptors.

Your endocrine system is made up of the glands in your body that produce hormones. These include the pituitary, thyroid, parathyroid, reproductive glands, adrenal glands, hypothalamus, and pancreas. The glands make hormones. Hormones regulate body function and development. Other organs in your body have receptor sites for specific hormones. Endocrine disruptors are chemicals that are close enough to hormones to attach to those receptor sites and prevent the real hormones from doing their job. In 2010, the federal government launched the Endocrine Disruptor Screening Program. They are taking this seriously.

Is it any wonder that 1 in 8 women will develop breast cancer in her lifetime? Is it any wonder that 23. 5 million Americans have autoimmune disease? Is it any wonder that 133 million Americans have chronic conditions?

Last week, I wrote that we are the canary in the coal mine. Our chronic diseases are a warning to the rest of the population that something is wrong, that something needs to change. While we can’t avoid all of these problems we CAN reduce the body burden of them by becoming informed and making different choices. I will write more about those choices in the coming weeks.

Endocrine Disruptor Screening Program http://www.epa.gov/endo/
Environmental Working Group on our water http://www.ewg.org/ourwater
Cosmetics Safety Data Base http://www.cosmeticsdatabase.com/

Two Handed Journaling

During a Mindfulness Based Stress Reduction workshop that I recently took we were asked to do what I call "two handed journaling." I did it years ago when I was working through some old emotional wounds that just didn't seem to want to heal. This is a very simple but powerful technique to get in touch with yourself, or parts of yourself that you often ignore.

Start with your dominant hand, the one you write with. Write a simple question like, "How are you doing today?" Pause. Take the pen in your non-dominant hand and write an answer. From there, continue the dialogue for a while, alternating hands. If you get a chance, please share your experience with me!

Passport to the Land of the Sick

133,000,000 Americans have a chronic medical condition or illness. 23,500,000 Americans have an autoimmune disease. Of all the 20 year olds working right now, 3 out of 10 will end up on disability. The population of the United States is about 304,000,000. Lots of us are sick.

Yet, each one of us feels like we are the only one. We feel stigmatized, alone, isolated, damaged, hopeless and helpless. In my darkest time with lupus, I would go to sleep praying that I would not wake up in the morning. When that prayer turned to figuring out how to make it happen, I went for help. But the help didn't have a clue. So, I decided to figure out how to live with lupus.

These days I am nothing short of a chronic illness missionary. We may have chronic diseases but that does not mean our lives are over. Writing in Illness as Metaphor, Susan Sontag describes disease as a passport that takes us from the land of the well to the land of the sick.

Try to imagine a culture very different from yours, as different as you can imagine. Everything is different: the language, social rules, dress, religion, etc. Now imagine yourself permanently transported to that culture. What would you do? How long would you expect the new culture to conform to your ideas? How long would you isolate yourself? How willing would you be to learn about this new culture? Would you give up and spend the rest of your life bemoaning your situation or would you find a way to incorporate this new culture into your life?

We have been given a passport to the land of the sick and there is no going back. Everything is different. We have a choice. We can be angry, isolate ourselves, and expect the healthy world to conform to us, or we can find ways to incorporate this new culture into our lives. We have a choice.