AIDS is a complex phenomenon. On the one hand, it is just another disease. Just beyond the physical disease are questions and emotions arising from many levels . for anyone committed to healing work. Questions such as, how can I protect myself from infection? How can I prevent infections from spreading client to client? How do I provide a healing service like Rolfing, to someone with HIV, ARC or AIDS in a way that is beneficial and comfortable to them? Choosing not to work with these people needs to be acknowledged as a respectable choice as well. In this article AIDS will be discussed as a medical disease and as an illness experienced by people.
Biologically speaking, AIDS is caused by (HIV), the human immunodeficiency virus. It is a tiny viral organism that has successfully found a niche in the ecosystem and that niche happens to be humans. Persons who carry this virus are referred to as HIV+, and are often mistaken for persons who live with AIDS (PLWA). An HIV+ person may be well and may stay this way for years or for their entire lifetime. Wellness admittedly is a relative concept. Just as there is a spectrum of health and wellness described in the process of Rolfing, there is a similar spectrum like structure conceptualized by the modern medical community for the disease of immune deficiency. After the initial HIV exposure, infection may develop and remains, most research shows, for the duration of a lifetime. It seems to take 2-4 weeks yet can take up to two or more years for the body to respond to the infection with antibodies.
The virus can be dormant (the virus is sleeping in the genes) for years. Sometimes it is awakened by other infections; and if it replicates enough, it may cause AIDS Related Complex or ARC which is characterized by various symptoms such as swollen lymph glands, night sweats and weight loss. If AIDS develops, it usually happens after five years or more from the time of exposure to HIV. It is defined by a type of rare cancer called Kaposi s Sarcoma (KS) or by what is termed an opportunistic infection. These are organisms that most people need not be concerned about, because they are ubiquitous and live harmoniously with a strong immune systems. However, if a person’s immune system is weakened, and this means the cells that usually function to neutralize potential infections in the body, are either not present or not working properly, infections such as yeast or pneumocystis pneumonia can take hold. The spectrum then ranges from HIV infection where people are well to ARC where people experience periods of illness and fatigue some of the time to AIDS where people experience also periods of illness and wellness, yet often the illness periods are more debilitating.
I have a friend Ben, who has AIDS, the kind of AIDS that gave him Kaposi s Sarcoma. First it was just a reddish-purplish spot on his leg that wouldn’t go away. It didn’t hurt, but it looked like it was spreading and getting to be a bump. He decided to go to a dermatology clinic to have it looked at and the next thing he knew he was being told he had a “diagnosis of AIDS” and that he might live for just a few more years if he was lucky. That was two years ago. Ben is quite a handsome man, and he worries about facial and body disfigurement like loosing his hair if he needs to have radiation treatments for Kaposi’s lesions that get too noticeable. Ben has lost his job, because his boss guessed why he was losing weight and getting sick occasionally. Ben also lost his health insurance and had to apply for Medicaid. Then he was faced with whether he should be a subject in a government double-blind study on AZT. He wouldn’t know if he were receiving the only legal treatment for AIDS, AZT, or if he were taking sugar pills; but he has decided to try it. He actually considered himself lucky because AZT costs $8,000-10,000 a year, and some of his friends with AIDS were not eligible to be in the study and could not afford AZT. He figures if there’s a chance it will prolong his life, he could put up with constantly carrying a beeper around constantly that signals every four hours, round the clock to remind him to take his pills. He jokes sometimes about how much fun it is being mistaken for a doctor when he is beeped in public. Ben used to be a minister and realizes now that because of some of his religious beliefs he has judged himself rather harshly at times, especially at first, when he learned he was sick with AIDS. Now he is learning about forgiving himself and often states how much happier he is in his life than ever before. He has been to many healing circles and workshops about processing emotional blocks. At one of those workshops he fell in love with a man whom he describes as interesting, fun and willing to share with him very deeply. It is his first real trusting relationship. He says he knows he is going to die of AIDS but not for a while yet. Some days he feels vulnerable and depressed when he hears on the television and reads in the news papers about how all people with HIV infection are going to die young. He has imagined over and over what it will be like, his own death. “Lately,” he says, “This has changed and I feel much more at peace with knowing I will die soon.” He wants people to celebrate at his funeral. He says “I feel my spirit more and more each day. Do you think I am a little crazy?” He watches the Kaposi s lesions get bigger and become more numerous now. He knows from reading everything he can about his illness that this means they are growing on the inside of his body, near his blood vessels. Some days they hurt and some days they don’t. He smiles and says it is sort of like his emotions going up and down. Did I know he just got a new puppy? Oh yes, and he forgot to tell me he is starting his own business and is excited about that. It will be part time and he will work out of his home so he can rest when he needs to.
Ben would be a challenge to Rolf because the Kaposi Sarcoma lesions are cancerous, and a Rolfer would not know where the internal lesions were located. It is possible that working the deeper tissue with Rolfing could stimulate the lesions to grow. The sensitivity of the lesions change from day to day so much care needs to go into a decision about Rolfing someone with Kaposi s Sarcoma. There is no danger, however, to the Rolfer of catching Kaposi s by touching these skin lesions.
I have another friend who has AIDS who I will call Jack. He learned he had AIDS when he experienced his first bout of pneumocystis pneumonia (PCP) and was hospitalized. That was enough modern medicine for him and ever since he has not taken another drug. He stopped drinking alcohol and smoking a year before he came down with PCP and as soon as he was released from the hospital he went to a nutritionist who put him on a yeast free diet. This was very important to him, since he did not want anymore thrush infections (yeast in the mouth), which made his mouth sore and his gums bleed. He didn’t mind not eating breads and had already given up beer but to live without cookies and ice cream was almost unbearable! He told me how determined he was to stay off sugar because it was clear to him that he had transferred his addictive behavior from alcohol to sugar. He said he was not only dealing with healing his AIDS illness, he wanted a deeper kind of healing: one that addressed all the compulsiveness in his life and that meant giving up sugar as much as forgiving his alcoholic father. I watched him fuss over his handsome face with creams and herbal lotions because he had dermatitis. This was because of the immune deficiency too. He scrubs his skin with a loofa sponge each day to keep the skin cells happy (he jokes). He was also scrutinizing his skin for new lesions. Some of his friends have had Herpes Zoster. It can happen anywhere on the body. It looks like clumps of blisters and it is really painful. He said sometimes he is scared of getting this kind of herpes. Sometimes he gets frustrated because he does so much and he is impatient for his healing to occur. He lost more friends because of his erratic mood swings than because he had AIDS. Jack is very energetic, bright and feisty. He is on cleansing Chinese herbs, reads metaphysics voraciously, rides his bike every day now, and counsels others in his community with AIDS about the importance of nutrition. He gets acupuncture and massage regularly. His job in commercial real estate was too stressful so he is happy to tell me that he has quit. Now he is taking courses in spiritual counseling, and will combine this with his knowledge in macrobiotic nutrition and start a new career. Only now and then does he experience fatigue. He sees this as his body cleansing itself, getting rid of toxins and gives in to when his body needs rest. He is excited about his new life. The feeling of being contaminated is almost gone now and he wonders if he will find someone to share his life with. “For now,” he says, “1 am content to be rebuilding my life.” And by the way, he doesn’t refer to himself as a PLWA anymore. He says,” I am a TIDBIT, temporary immune deficiency body in transition. I want to think of myself in terms of wellness not disease.”
Although Jack has AIDS, he might be a good candidate for Rolfing. The Rolfer would need to take a good look at the skin to notice any rash. It would be reasonable to ask the client what the rash is. It would be important to take care not to touch the rash because of sensitivity and especially in the case of Herpes Simplex or Zoster, because these rashes can be spread to other parts of the client’s body. Without gloves it is possible to spread herpes simplex to the Rolfer. Herpes Zoster is just the adult form of chicken pox and unless the Rolfer was not already immune it would not be contagious. It is probably worth mentioning that yeast infections in the form of thrush or athletes foot are common infections for PLWAs and shouldn’t be Rolfed, because this would be painful for the client. Contagion should not be a problem for the Rolfer if the regular precautions are taken such as washing hands before and after each client. Using gloves or finger cots are wise when working in the client’s mouth. Getting saliva on you is no longer considered a threat. The amount of virus in saliva is very small and is attenuated by the enzymes in the mouth. There have only been two persons, in the literature, infected with HIV among hundreds of reported exposures to infected bodily fluids. If cuts or chapped hands are a concern, it is reasonable to wear gloves when contact with blood or saliva is likely.
If a Rolfer were pregnant, the recommendation is not to work directly with a PLWA because the client might be shedding a virus called Cytomegalo virus. This virus is known to sometimes cause abnormalities in the fetus. If a Rolfer has fear about working with a client, the best medicine is to talk about it. Sometimes statistics and the facts are just not enough to allay the fear.
I hope by introducing you to my friends Ben and Jack you have a better understanding of what life is like for a person living with AIDS. Fearing the disease AIDS and spending time with a PLWA are quite different. PLWAs are wonderful examples of how to be persistent with your own healing. They teach gentleness and patience just by continuing to live their lives. In essence they are teaching healing through illness.
Diane Boticelli is a Certified Physician Assistant at Circle Health Center in Boulder, Colorado and the Director of Education for Boulder County’s AIDS Project.Rolfing the Person Living with AIDS