Gerald “Jerry” Crum longtime ME/CFS activist, died on June 1, 2008 from cancer. Crem had been diagnosed with ME/CFS in the late 1980s and he was a pioneering advocate for research and was among the first patients to participate in the clinical trials of the drug Ampligen.
Crum shared a long history with the CFIDS Association. He was a founding member of CFIDS Action Campaign for the United States (CACTUS), the first chairman of the Association’spublic policy committee, and his wife, Coco, served on the Association’s Board of Directors from 1993 until 1998. Crum was also an appointee to the Department of Health and Human Services CFS Coordinating Committee, a predecessor to the CFS Advisory Committee. After he was diagnosed with lymphoma in December 1997, he engaged in cancer advocacy in his home state of Nevada and on the national scale. He testified several times before the Nevada legislature to improve access to treatments for CFS and cancer and worked to help pass legislation creating the Whittemore-Peterson Institute now being built in Reno.
The CFIDS Association honors Crum’s tireless efforts to campaign for the rights of people disabled by CFS and cancer. Here is a popular story he wrote for the CFIDS Chronicle in 1989 about his experience with the illness titled My Dance with the Serpent.
Here is part of Crum’s story which you can read in the link above:
There is a rhythmical nature to CFS. There are ups and downs, good days, bad days, and days that are in between. For me, its like a slow dance. When the serpent moves toward me, I withdraw from it. When he moves away, I move forward. To do it well is like learning any dance; it takes time and practice. At first you stumble and make mistakes, but if you keep practicing, it becomes natural like my dance with the serpent. For me, this model works very well. I no longer have those extreme up and down moods. This is not to say I dont have bad days, I just know what to do when they come along; the cobra warns me.
My serpent, like I said before, has taught me a bit of wisdom which at times is hard to accept but nonetheless I believe is true. It has to do with choosing to be bitten. He edges closer to me and I am tired; the lymph nodes in my neck are swollen. I know that if I dont push myself during the day and go to bed early I will be able to cause him to withdraw. But those friends, bless them, have asked us out to dinner. I choose to go. I know I will get bitten. And I take full responsibility for being bitten. For me that means the next day I dont complain to my wife, I dont make an appointment with my doctor and lament about how bad I feel, I dont blame work, and I dont burden friends (or anyone else who will listen) about how this disease has ruined my life. In other words, I act like a responsible adult.
This is a bitter pill, but think about it for a second. I knew the serpent would strike; I make the choice. Does this mean it was a bad choice? Not necessarily. If I take the responsibility for my actions, part of which is telling my wife what is going to happen so she can plan (and perhaps help me with my choice), leaving enough time to recover so that work is not affected, then for me, this time, the choice was a good decision. Yet, this does not mean that it will be the right choice next time.