Joe's inspirational speech about living with AIDS which he delivered on World AIDS Day to benefit A Loving Spoonful and its work with AIDS victims.
World AIDS Day Luncheon
Diva at the Metropolitan Hotel
645 Howe Street
Vancouver, British Columbia
Ladies and gentlemen,
afternoon. My name is Joe Average . A Loving Spoonful invited me here
today to speak to you about what it's like living with HIV (In 10
Hmm… a difficult task. Let me start by telling you a bit about my history.
For those of you who don't know my story, I am an artist, 48 years old. I contracted HIV when I was 25. When I was first diagnosed I asked my doctor what to expect. His response was “You could last six months, you could last a year, five years, 10 years or forever…we honestly just don't know.” I said: “I'll choose that last one. The forever one.” You see, I had known a few people who were either living with HIV/AIDS or had died from it, and the one thing I had figured out, is that if I let HIV take over my life, it would. So, I had some choices to make. I needed a distraction. A reason to live. At that time in my life I was out of work. I thought, well, if six months is what I have left, how do I want to spend it? My one true love was art. So I challenged myself to live and work as an artist and have been doing so since.
Okay. Back to living with HIV. It isn't so much about living with HIV. It's more about living with depression, medications, learning how to prepare drugs, swallowing up to 50 pills a day, learning how to inject drugs, getting over needle phobia, guinea pigging experimental drugs, living with the side effects. It's about juggling doctors appointments, pharmacy appointments, blood tests, countless hours in waiting rooms, doctors, doctors' egos, and doctors mistakes, doctors that disagree with each other…. The list goes on. You learn to listen to the doctors as advisors. There is no all-powerful, all-knowing person out there who knows what's best for you. So you just take in the information and rely on your intuition and make the important decisions yourself.
About 8 years ago HIV really started to become a full time job for me. I should say, managing the side effects became a full time job. Some affect you mentally. Some affect you physically. Some are so painful that managing pain becomes your life. Not going out in public because your nose bleeds for half an hour simply from tilting your head forward (and you are a bio hazard) or when your immune system is so low that catching a cold could kill you. Needless to say this all has affected my livelihood. With my mind being so full and chaotic I haven't painted for five years. Someone asked me when I decided to stop painting. I didn't decide to stop painting; it's just that things got so intense. The natural process of taking out my sketchbook just stopped. It's hard to be inspired and creative. Not painting has made my self-esteem go down and it's hurt me financially. I had the foresight when I had some money to produce limited edition prints of my art, which is what has been keeping me alive but it is a very hand to mouth existence for me now.
One of the nasty side effects from the long-term use of some of the HIV medications has been the loss of body fat. Wasting syndrome they call it. This is where I want to talk about the importance of nutrition and exercise. I was working out on my own for a couple of years here and there, but when I started losing the body fat, I knew I needed some good advice and training. I had hidden some money in a safety deposit box as a “when I get sick fund.” I decided instead of having this money sitting there waiting for me to get sick that I would hire a trainer. Five years ago I hired my trainer, Cord Reisdorf to get me into shape and keep me strong. I have been with him since.
Three years ago I became resistant to almost all the drugs. I needed a new drug. A salvage drug had finally been approved, but the government was slow in bringing it in because of the extremely high price tag attached. I lived for a year with almost no immune system. I had to take leave from the gym due to anemia. I was told to get my affairs in order. I was broke and unsure of everything. It all seemed so damn bleak. It was a horrible period of my life. After a year of waiting the government finally brought in the drug, which I have now been on for two years and I am happy to say that my immune system is strong again and my viral lode has been undetectable for a year. It has taken a lot of work to get to this point again, and I have not done this alone. The drugs alone do not keep you healthy. You have to work your ass off to keep nourished, strong and sane. You see, a lot of these drugs curb your appetite. Malnutrition and depression are a horrible combination. When you are malnourished, not only can the drugs you are taking not work properly but also, you start not caring about things. You have no drive. No energy. You start to atrophy. I am very fortunate to have had some great help from some amazingly kind and generous people.
I'd like to take this opportunity to publicly thank four of them.
First off, I'd like to thank my friend of 25 years, Anne Carlson. The drug I mentioned a few minutes ago, the salvage drug called T20 comes with it's own challenges. You see, this drug has to be injected twice a day subcutaneously. This is quite a challenge, as I have no body fat. There are very limited areas to inject into. I have a small amount of fat in my abdomen that I am able to inject myself but because of the limited space and the injection site reactions the shots need to be rotated. The only other place that is available is on my back. Anne stepped up at the beginning and offered to inject my back for me. Because there is more space on my back than on my abdomen Anne offered to do the shots for me twice a day (every 12 hours). This saves wear and tear on my abdomen so that I am able to inject there when she is ill or away. For the better part of two years she has faithfully trudged through any weather twice a day. My first shot of the day is at 4:30 in the morning and the second is at 4: 30 in the afternoon. She also had to overcome her own personal fear of needles. Just over a year ago while she was giving me my morning shot she noticed all the cheap frozen dinner boxes in the garbage. Knowing how stubbornly independent I was she got on the phone that afternoon and called up her friend Sue at a Loving Spoonful. Thank you Anne.
brings me to my second thank you.
Thank you Sue.
Thank you A Loving Spoonful.
Nutrition plays an important role in helping the immune system of our bodies work well. The immune system is a natural part of our body that fights off germs, viruses, bacteria and other disease-causing organisms that we can come in contact with every day. When you are infected with HIV, your immune system is being damaged. Eating right can help it fight back to the best of its ability. Eating right can also help your body stay stronger during any medical treatments that you may need to have.
Good nutrition cannot cure AIDS or prevent HIV infection, but it can help improve the nutritional status of an HIV-infected person and delay the onset of AIDS-related diseases. Eating well can, therefore, improve the quality of life of people living with HIV/AIDS.
For the last year A Loving Spoonful has delivered seven organic meals a week to me which has been such an important part of staying healthy and strong and fueling my body so that when I work out I can produce more muscle mass. Muscle mass is very important because when there is no more body fat for the drugs to eat the muscles are the next to go. This is why I work out 5 times a week.
brings me to my 3rd thank you.
Thank you Cord.
Over a year ago I approached Cord and told him that I was going to have to stop training because of my financial situation. Without hesitation he said “Money‘s not an issue anymore. There's no way I am going to let you quit now after all we have accomplished. Lets keep you healthy”. I have managed to give him a little cash over the last year, but for the most part he's trained me for free, letting me keep my old regimen of working out 5 times a week. I am in better physical shape than I have ever been. Exercise has many of the same advantages for people with HIV disease as it does for most people. Exercise improves muscle mass, strength and endurance. Improves heart and lung endurance. It improves your energy level so you feel less tired, reduces stress, enhances your sense of well-being, helps stabilize or prevent declines in T-cell counts, increases bone strength, decreases cholesterol and triglycerides, improves appetite, improves sleep and improves the way the body uses and controls blood sugar. With Cord it's much more than just keeping in shape. Going to the gym every morning gives me something to look forward to. Even on days that I wake up overwhelmed and questioning it all, days I might just want to stay in bed and hide from the world, I know that I have the gym to look forward to. Cord has become my friend. For that hour that I am with him I forget about painful injection sites on my back and abdomen. I forget about the struggle. I forget about my problems. He is a very intuitive man. He constantly challenges me. He is able to make me laugh and laugh at myself.
Last but not least I want to than my naturopath, Dr. Laura Louie, who last year also told me that money was not an issue for her anymore either. She constantly encourages and reminds me that HIV is a chronic disease that we are going to keep at bay and she makes sure that once a week I continue to get my intravenous vitamin push and that I have the basic supplements at home, even though she spends more than half of her year now in Thailand in a poor remote village where all the men have died from AIDS and all the women and children are infected with HIV/AIDS. She has set up a clinic there and teaches the nurses how to use acupuncture. It's called The Mae On Project. She is in the process of setting up a similar program in Africa for next year. I hooked up with her about 14 years ago when I first started having complications with HIV.
Thanks to these 4 people I have the essentials to live and to want to live. Nutrition, an extra set of hands, strength, and laughter in this complicated and serious life of mine. I have no idea where I would be right now if it wasn't for the help of these people
So, you see how complicated and connected it all is...
Please continue to support A Loving Spoonful. They provide such a valuable service.
If I have inspired any of you to start working out please support Cord. He's one of the best trainers around, and one of the nicest people you will ever meet. His company is called Peak Performance. There is a link to his web site www.reachyourpeak.net on my website. And, don't bug Anne. She now has 2 grandchildren and her plate is full.
We're all lab rats in this experiment with HIV. No doctor has the magic pill and no one knows what's going to happen next. We've barely been taking these meds long enough to know the long-term effects or benefits. You've got to get used to that. I'm a lot luckier than my friends who were diagnosed in the first years of this epidemic. It still gives me pause to think of how many of my friends might still be alive if they'd just lived another month or two for the first protease inhibitors to come out. I am thankful, grateful for the meds we have. It's a whole lot better energy to be grateful for meds (and even their side effects) than the waste of energy to complain about all the side effects and worry about dying. I can't worry about dying – we're all going to do it no matter what.
Happy World AIDS Day.
Joe Average may be contacted by email at firstname.lastname@example.org, by phone at 604-646-0575, or by mail to 401-1516 Burnaby Street, Vancouver, BC, V6G 1W9, Canada.