Thursday, May 26, 2011

For Anyone Who Has A Chronic Disease

If you have a chronic illness, take out your calendar. Look at your schedule and figure out where you are spending your time. Are you spending it doing things you love? Are you spending your time with others? Are you doing things to nurture your soul?

On Wednesday May 18th, 2012 approximately twenty multiple sclerosis patients met at Tacoma’s Multicare Medical Center to talk about MS. However, MS was not what we primarily talked about, and that is the way it ought to be. If you have MS or any other chronic illness, you are not your disease. You are yourself. Some of us were newly diagnosed and some have had the illness for twenty or more years. Such is the case with one of the two speakers, former professional bicyclist Maureen Manley.

Manley is a physically fit healthy looking woman who breaks all stereotypes about chronic illness. Most MS patients do break those stereotypes. One first envisions wheelchairs when MS is mentioned. We did collectively laugh at the constant comments from others who say, “But you don’t look sick!” Manley suggested we answer that question quickly by simply saying “thank you.” Most of us have the experience of trying to get others to understand that we are indeed sick, but it wastes our time and energy and that is something we need to savor for the more important aspects of our lives. Besides, no one with a chronic illness is that illness.

Human beings are holistic and encompass at least four behavioral areas: spiritual; biological; psychological and social. When a person becomes ill, and many people are ill a long time before they might even know they are ill, everything changes. However, even in illness, one must stop and ask the question “What did I do before I knew I became ill and what can I do now that I am ill?” Maybe, like Maureen, you raced competitively. Perhaps you loved to go hiking. Maybe, like me, you enjoyed playing tennis and running and aerobics and have even tried dragon boating. Depending on the level of ability, those things do not have to be discarded. The National Parks are indeed much more accessible than ever. Perhaps you can no longer take that ten mile hike, but you can take your scooter up to the mountain and ride it along the pathways.

I can no longer do a three hour long aerobic workout, but I can do sixty minutes of pilates. Depending on the day, I can walk a half mile a mile or even several miles. In 1998 I thought this would be impossible. I could not walk further than half a block. Determination did not stop me. I called myself a “lawn splasher” because I would force myself outside to walk and just fall over onto neighbor’s lawns. I would rest until I could get back up and start walking again. You get the point. Do what you can. Studies show the single most effective way to battle any chronic illness is exercise.

An interesting aspect of wellness comes from the study of the mind-body connection or psychoneuroimmunology. Stress has been shown to change hormone levels of cortisol, epinephrine and norenpinephrine in the brain which are all linked to depression. Fear, resentment and sorrow have been clinically proven to raise stress hormones. When these levels remain elevated, insulin output increases and leads to the release of inflammatory hormones knows as cytokines and leukotrienes. The result is inflammation at a cellular level which leads to all sort of disease like cancer, according to Dr. Christiane Northrup.

Our beliefs about health and healing have a tremendous impact on our well being. What messages do you tell yourself about your health? If you think you are sick all the time, then you become what you think. Perhaps a shift in thinking could be, “Right now I do not feel well” rather than telling your brain you are sick.

Have you ever known someone who has a story? If you have ever worked with the elderly as I have, you know people have a story. A story happens as follows: there is an event, a belief about the event, thoughts about the event, a story, and then an outcome.

This cyclical process of a story becomes “The Anatomy of a Story.” I remember seeing an English film some years ago called “Cold Comfort Farm.” In this film, an elderly woman keeps repeating the same line. “I saw something nasty in the woodshed!” she declares upon every encounter. Finally she is challenged by an out of town relative who says back to her, “I don’t care!” This interrupted her story and she subsequently came out of the room she’d locked herself in for years.

It’s true that you have an illness. Perhaps you really do want validation that you have an illness. The problem is the only people who will give you that validation are those closest to you or yourself. Everyone else, particularly with a disease that is so often a hidden disease like MS, is going to discount you. The validation you seek will actually be retribution. Worse, people will simply judge you or start telling you stories about someone they know who died of the illness you have.

Even worse, people might try to exploit you offering all kinds of strange treatments that cost a lot of money and ultimately lead you back to needing validation. I have been approached by at least a dozen people selling “cures” for MS but mainly they want me to sell some pyramid scheme vitamin or other product. Others have attempted to exploit me with strange unproven cures. The truth is, if someone had the cure, it would be announced and loudly. Give up on getting validation. You know you don’t feel well, but take responsibility for your health and grieve it. Then move forward. I know that makes it sound much simpler than it is, but it really comes down to personal choice.

It sounds preachy, but be grateful for what you have. Start a gratitude journal. Write down three things every day you are grateful for. They don’t have to be huge like listing your kids or husband or wife or dog. It can be something simple like feeling warm or not being hungry or seeing your plants grow in the garden. On those days when even walking or using your scooter or wheelchair to get into a store seems overwhelming, stop, breathe and think of something you are grateful for. Breathe deeply and think of something. “I am grateful I only have ten things on my shopping list instead of twenty, because twenty would be ten more than I have right now!”

Finally, exercise, exercise, exercise. I am not suggesting anyone go out and run a marathon. Everyone has his or her own level of ability. Perhaps you can only move a bit from a chair. Science has proven the brain has plasticity. With every new movement, the brain actually rewires itself. Imagine yourself driving on the freeway and finding out there is a huge backup ahead of you. As a driver, you take an exit. Your brain does the same thing. Studies have shown that the progression of MS may have more to do with deconditioning and the loss of neuronetworking than the actual process of the disease. This is not true of all patients. Some MS patients get hit hard. However, as with any chronic illness, exercise has been proven to wash the brain and immune system with incredible healing elements.

Lastly, ask yourself who you are. I bet the answer is not MS or cancer or bipolar disease or thyroid or graves or fibromyalgia or anything like it. I bet you are a sister, a mom, a wife, a friend, a person who writes, sews, sings, reads, laughs or gardens. People in this culture usually define themselves by their paid work. If people ask you what you do, answer that question proudly. If you are not working, say you are a mother and say it proudly. If you have a hobby and that is you, say it proudly. Don’t ever let someone steal your dignity by defining you by what you are not. Do not be ashamed of who you are. Stand up straight and speak with confidence. I have been diagnosed with MS since 1998. I have had symptoms since 1979. I am not a disease. My name is Alison. I am a writer, a cook, and an activist for the disabled. –Alison Whiteman


Linda Medrano said...

Brava! Alison, this is fantastic!

susanwatkin said...

Great stuff!
Keep fighting the good fight....
Love Sue & Gordon

syrVIV said...

hi ali,

gotta go for a walk!


syrVIV said...

excellent blog post, among many!