The Positive Side

Spring/Summer 2005 

Chatty CATIE: What is the one thing you just can’t live without as a person with HIV/AIDS?

Interviews by RonniLyn Pustil

MARLENE FREISE, 58

Toronto

“My ART CLASSES immediately come to mind. In 1994, I saw an ad for the Art Gallery of Ontario’s drawing classes entitled, ‘Drawing for the Absolute and Terrified Beginner.’ I absolutely hated art in school and decided to put the gallery to the test. In retrospect, perhaps this was a metaphor for the virus — what I could not control in my body I could achieve with my mind … anything to regain some sense of control.

“I did two sessions of beginner drawing until my teacher insisted that I was ready to ‘graduate’ to painting … and I love it! It is the only pastime/hobby I’ve ever stuck with. Painting is relaxing to the point that it sometimes becomes spiritual. I do it for myself and myself alone. What I feel helps this process is having teachers who totally support everything you produce. You can be dissatisfied but they always find positive aspects of the work. Maybe in life we need to surround ourselves with these types of individuals, too.

“Life is tough enough without adding the stress of health issues while trying to run a household and raise a family. It’s a constant challenge to keep from sliding into the abyss of depression. Though I tend to become quite depressed in the winter, I won’t miss my Friday morning class — it gets me out of the house and my teacher’s studio is a large, airy loft with lots of light. The creative and supportive atmosphere allows me the freedom to completely relax physically and mentally and enjoy the process without distractions or fear. Those times when my concentration is so focused are absolutely exhilarating — it almost feels like an out-of-body experience, like the paint brush is moving on its own. Perhaps trying to recapture the sense of peace and tranquility you feel when you’re so focused is the ultimate appeal, while the painting itself becomes the means to the end.”

 

CHRIS TYRELL, 57

Vancouver

AIDS service organizations, out of necessity, concentrate on supporting people who lack family or societal support. I have a job I like that pays well and I have savings. As an educated male with resources, I feel left to myself in many ways. The magazine LIVING +, published by the B.C. Persons With AIDS Society (BCPWA), is the most important support I get as a positive person. I love its depth and diversity, and I love that it speaks to an educated audience. I would be lost without it. I learn from it and teach my doctor, peers and friends about things I learn from it. My brain is my most important resource for living and coping with HIV, and nothing feeds it like Living +.”

EVAN COLLINS, 47

Toronto

“The one thing I’d say is most important to me in living with HIV is SOMEONE TO LOVE. That can include family and friends but especially a partner — someone to come home to, a warm body to snuggle up to in bed; someone who will put up with me in sickness and in health, in good moods or when I am a crabby little shit. Oh yeah, the sex helps as well. I feel a bit uncomfortable putting this at the top of my list because so many people don’t have it and can’t get it for various reasons, but for me it’s the one thing I would find it hard to live without. Fortunately, I have such a person in my life.”

SUSAN COHEN-BECKER, 47

Halifax

“Having REGULAR BOWEL MOVEMENTS is the one thing I can’t live without. Once or twice a day, long, well-formed, easy-to-pass stools are not only a sign of good digestion, but also feel good — kind of like mini orgasms.”

 

JEREMIAH DOUGLAS, 44

Calgary

ENSURE helps stimulate my appetite and reduce early morning nausea and fatigue. It’s a complete meal replacement that is lactose free, so anyone can drink it. Each can of Ensure contains 250 calories. There is a variety of flavours (my favourite is Wildberry and then Strawberry, best poured slowly over ice and guzzled), and although they’re artificial they taste good. I’ve been drinking Ensure for years, and I know what works, having fought this battle for 20 years.”

 

REN BOWMAN, 52

Belleville

“What I’ve found I cannot live without as a person living with HIV/AIDS is my FAITH IN GOD. (I am not a ‘raving fundamentalist’ — quite the opposite!) My diagnosis forced me to some serious self-assessment (soul-searching), including examining my spirituality. What I discovered in these past eight years was that while HIV may ostracize me from many segments of society, it has not separated me from my creator/sustainer. She, in fact, lovingly welcomes me.

“This sense of being loved, ultimately and unconditionally, impacts every aspect of my life with HIV. Because of it I am better able to cope with the rigours of treatment. It gives me hope to be able to get up and go to work every day and share the skills and experience I’ve acquired. It drives me to be a more ‘healthy’ person who happens to have a severely compromised immune system.

“Do I think I will one day live HIV-free or ‘cured’? Only if medical science makes a breakthrough and achieves it. I don’t believe in miracles — beyond the miracle of life itself. Life is bigger and more powerful than HIV. I feel that even as HIV invades the cells of my body, I live in a bubble of divine love that is unassailable.”

 

QUINN X. WADE, 33

Edmonton

“The thing that I can’t live without is, simply, LIFE. With all of its wonder and complexities, seeing the sunrise or a perfect snowflake helps me understand that there’s so much more to living than existing. Appreciating things like a raging thunderstorm or the gentle trickle of rain brings me out of whatever pain or suffering I’m feeling and helps me understand that there is something bigger out there that needs to be appreciated for the beauty that it is.

“I find this beauty even on the days that start out to be the worst. When everything is going wrong in my life and it takes everything I have just to get myself off the couch, a sunbeam will come in the window and warm me when I’m cold or someone will land on my doorstep unexpectedly just to say hello.

“Moment by moment, life goes by and I am constantly reminded that I can choose to let it go by and act as though I am already six feet under — or I can choose to live it. On days that are physically the best, I maximize every drop of living I can get in. I’ll try something I’ve never tried before or do something I haven’t done in a long time. For me, it’s not about living longer, it’s about living better.”

JAIME WAGNER, 34

west coast of Newfoundland

“The product I couldn’t live without is AVEENO — the lotion and body wash — because my skin is always dry. It’s made out of oatmeal, which is soothing to the skin. I use the lotion all the time on my face, body and hands, but especially when I come in from the cold or after a shower. I’ve tried other lotions before, but I found them to be sticky or oily. Aveeno works right away and stops the itchiness.”

RON ROSENES, 57

Toronto

YOGA has given me a new way to look at my life. It has taught me to surrender my fear of being upside-down and on the edge of control and to just go with it. It’s given me the confidence to get on with my life and try new things.”

LUC GAGNON, 40

Montreal

“I smoke MARIJUANA almost every day, about two grams per month, for the following reasons: peripheral neuropathy, appetite, relaxation, relief and pleasure. And not necessarily in that order — it depends on my mood.

“Peripheral neuropathy: I took Videx (ddI) during my first antiretroviral treatment. Not having been informed beforehand about the possible side effects, I took it for too long before making the connection between the medication and problems with swelling and severe pins and needles in my feet. Consequently, I’ve possibly developed permanent damage. This, however, has improved markedly since changes were made in my medication and I started taking the complementary products L-carnitine and co-enzyme Q10. During the most intense period of peripheral neuropathy, pot helped to manage the pain in a very effective way.

“Appetite: HIV and/or its treatment both have an indisputable effect on my appetite. Wishing to stay in shape and remaining attractive are also part of this. Taking a small puff every day helps increase my appetite in the evening. I don’t think I have to elaborate on this — anyone who’s ever smoked marijuana knows about the munchies.

“Relaxation, relief and/or pleasure: The euphoric state brought about by the use of marijuana allows the muscles and nervous system to relax, which in turn helps relieve peripheral pain as well as arouse the senses, including taste (appetite) and touch (making love). After all, there’s no harm in treating oneself kindly.

“Access to quality therapeutic marijuana should be a top priority in helping to improve the quality of life of PHAs. Well-managed marijuana use can only be beneficial to PHAs, who must at times deal with hard-to-tolerate side effects. In any case, it works for me!”

 

MICHAEL CONNIDIS, 50

Vancouver

“Repeated trips to the toilet were tiresome and draining while I suffered with chronic diarrhea due to the very drugs that were keeping me alive and relatively healthy. I followed different diets, avoided certain foods, took calcium supplements and tried numerous over-the-counter and prescription drugs in my efforts to ease my churning bowels and burning butt. I’d forgotten what it felt like to have a good bowel movement, to pass a well-formed stool. Unless you’ve had chronic diarrhea, you wouldn’t fully appreciate this comment and might even cringe at the very thought.

“Thanks to daily supplements of L-GLUTAMINE, 5 mg twice a day, in a smoothie or fruit juice, no longer do I dash to the bathroom, cheeks clenched, numerous times throughout the day. No more anxiety because I didn’t know where the nearest washroom is, no more embarrassing accidents. I am once again enjoying the regular pleasure of a healthy, well-formed bowel movement. L-glutamine is a product I would not want to live without.”

 

ALEXANDER PETERS, 60

Ottawa

“My anchor is MY CATS, Shinshu and Xena. They are as close as family to me. They offer love and friendship, asking for nothing but basic life support. I pamper and spoil them outrageously, but we all enjoy it.”

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