May 31, 2008 -- 

There has been a tremendous initial response to our call for volunteers to organizer walks for the Conquer Chiari Walk Across America.  Sites will be finalized within the next month, so check back to the website to see if there is a walk near you.

It is not too late to organize a walk in your area, just email director@conquerchiari.org if you are interested.

We are looking for volunteers in the Southern California area to help organize a walk. If you live in that area and are interested, please email me.

More information about the walk can be found at:  Conquer Chiari Walk Across America.

On a different subject, this issue contains a research update on how Acceptance can improve a person's ability to function despite living with chronic pain.  I feel very strongly that this is true and in fact in the Patient's Guide book, Acceptance is the first step in my 10 steps to Conquering Chiari.

Below is a short excerpt from the book about Acceptance:

Step 1:  Move Past the Anger to Acceptance
     Anger is a very powerful emotion, and when confronted with what seems like a gross injustice, a very understandable one. While anger is a very natural, and probably necessary part of coping with the shock of dealing with a disease like Chiari, it should also be a temporary one. 
     Many people are familiar with the five stages of grief: denial, anger, bargaining, depression, and acceptance. Interestingly, the five stages of grief were originally the five stages of receiving catastrophic news. One would have to consider being diagnosed with Chiari as catastrophic news, so the five stages definitely apply. It is important not to get caught up in the details and order of the stages, grief (for lack of a better word) is complicated and everyone reacts differently. Human emotions don’t always fit easily into well-defined categories. However, it is also important to note that anger is a transitional phase and not the end goal. Someone who works through their emotions in a healthy way will in the end reach some level of acceptance.
     Unfortunately, far too often I have seen people stuck in anger. The power of anger becomes all consuming and they are never able to accept the situation and take positive steps to improve their health and lives. This is a
terrible situation, with patients feeling they have been hurt and treated unfairly by life. While in one sense this is true, it is also extremely counterproductive to dwell on it.
     As patients, at some point we must accept the situation and move on with our lives. I think that after a normal period of adjustment, we must let go of the anger, recognize that our lives have changed, and move forward as best we know how. Does this mean we should never think about the way our lives used to be or the dreams we had? No, I think it's healthy to work through those thoughts and emotions when they come up, as long as they
don't become overwhelming.
     Anger can be a problem for many people outside of the Chiari community as well, but if you listen to angry people who have let go, they speak of a feeling of liberation and as if a great weight has been lifted from them. This is because anger is such a strong emotion, and if we hold on to it for too long, it becomes destructive.
     Research supports that acceptance can be critical in dealing with a chronic disease or disability. In fact studies have shown that whether someone with a chronic disease or disability has accepted their situation has a strong influence on both their quality of life and overall health in general.  Letting go of the anger and accepting the situation at hand is the first step in dealing with, and overcoming, Chiari on a long-term basis.

-- Rick Labuda

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