“Why me?” I’m sure many of us have asked this question of ourselves and our doctors. I’m sure that I at least thought it, until I went through the experience of caring for my mother as she was dying of cancer. During the entire episode, I never heard her say “Why me?” Her attitude was very positive despite the disease. I have always been a “go with the flow” type person, especially in my interactions with others, so I rarely used this phrase either, but after being with mom, I don’t think I could. So I have chosen to look at my experience with CFIDS/FM in another way: “How did I get so lucky?”
I am trying, with some success, to put a positive spin on the situation, at least as it relates to my life. I have had opportunities to do some things I would never have time for if I were still able to work full time. I started a small business. I learned several new skills. I made friends I would not have made.
But the most important positive came about the time my situation got bad enough that I had to quit working at all. There’s a saying that when a door in your life closes, somewhere there is a window that opens. That is what happened to me.
I don’t think I have ever told you about how I came to write this column, and thus have the opportunity to meet, and I hope, help, my readers. In the spring of 2000, I was with my spouse during a hospital stay in a well known hospital in Santa Barbara, CA, the home of Pro Health, Inc. This was about 6 months before I finally left work, and I was already struggling, trying to keep up with my job and my life. Pro Health was advertising for a desk type job. Since we live within commute distance, I applied, although I had few skills that were appropriate for the position. I had been purchasing products, and reading Healthwatch and the ImmuneSupport.com website for a long time, so I was well aware of the company.
I received a nice letter from Pro Health, Inc, thanking me for applying, and telling me they found someone with better qualifications. I expected that they would, but appreciated the letter. Little did I know where it would lead. About 6 months later, just before I had to leave my job, I received a call from the someone at Pro Health, Inc. Out of the blue, they wanted to talk to me about an idea they had. They wanted someone with CFIDS/FM to write a “coping” column for the ImmuneSupport.com email bulletin. The fact that I was a nurse was even better.
After a telephone conversation with the editor of the bulletin, I spent the weekend writing a short piece about my experience with CFIDS/FM. On Monday, I went for an interview, being sure that I had not, and could not write well enough for them to be interested in publishing anything I had written. I had done little other than some technical writing, since college. I expected to hear “Well, thanks for coming, but we’re going to look further.”
I was overwhelmed that they liked what I had to say. I was scared to death at the idea of writing two columns a month. Thanks to brainfog, I really remember very little of the meeting. But the window was opened. In less than a week, my spouse was in the hospital with pneumonia, and I was off work on disability. I actually wrote my second column at the Pro Health office in Santa Barbara, as we were back at the Santa Barbara hospital for follow-up care.
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As time went by on disability, I missed my patient interaction. They had always been real people with real problems for me. I frequently got frustrated with organizational politics wherever I was working, but I always loved my patients. But now I had my readers, people who shared my disease, who I might be able to help. Soon, I also had an email address at Pro Health so readers could write with questions or comments. The window opened wider and let me continue to help others despite my disease. How did I get so lucky?!
Other CFIDS/FM patients have found that window, too. Dr. Devin Starlanyl, who has written such helpful books rich in information for us. Laura Hillenbrand who wrote SEABISCUIT: An American Legend, and by doing so gave publicity to the subject of CFIDS. There are two very special ladies I have met through writing this column. One of them is the list/site mom for a very active support group. The other does a monthly newsletter which gathers lots of information for those with CFIDS/FM, and is available for communication with any of her readers or others who need help or have questions. (Tigi and Dominie, thanks). There are many others.
And there is another story many of you probably don’t know. That is about a man named Rich Carson. He was stricken with CFIDS, then an unrecognized disease, in 1981 at age 23. He went on to start a company which provides education, health products, and donations to research in CFIDS/FM. That company is Pro Health, Inc., the owner of ImmuneSupport.com and its sister sites. Thank you, Rich, for what you started, what it gives all of us, and especially the opportunity/window it has given me.
I know finding positives may sound foreign and foolish to many of you who are dealing with this DD. But if you can do that, I think you will find that it makes the disease more bearable. Take care and be well.
Yours in health,
I welcome your comments and questions at: firstname.lastname@example.org. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well.