Iris's story: "I thought the doctor must be mistaken"
Finding out late in life you are HIV-positive can be a shock. Here is how Guelph, Ontario’s iris Budd handled it with the help of her local AIDS Service Organization
Back in 2005 I ended up in the hospital, deathly ill.
The doctor first thought that I had a brain tumor (cancer). I had been in a coma for 2 weeks and when I came out of it, I couldn’t use my left side, as it was paralyzed. The doctor diagnosed me and summoned my children to the hospital, because he said, your mother probably won’t live. They said they had to perform a brain biopsy, so they shaved a triangle out of my hair and drilled a hole in my scalp to take a small part of my brain. I had a brain infection, I had a rare fungus on my lungs, toxoplasmosis and pneumonia. I was very sick.
After the biopsy the nurse came into my room and said, they might have to do another one. I said, absolutely NOT, I’d rather die. The procedure is gruesome, and my response to it honest and heartfelt.
The doctor then said "by the way you have AIDS". I had been in a four-year relationship at that time and I thought It just couldn’t be.
The 12 years since have been a long and hard and difficult battle to get some of my health back. The reason why I am saying this is so you know how I got here, and how sick I have been. I knew absolutely nothing of the virus and didn’t know how I contracted it, and blamed it on my partner.
While in the hospital, they put me on antiviral medication and it had lots of unpleasant side effects and I did not tolerate it well. I would vomit constantly and also had diarrhea six or seven times a day. One time I could feel the need to go to the bathroom coming on, and I tried to get up, but it came on so fast. I had all these tubes in me, and by the time I stood beside my bed, I couldn’t stop it and it gushed out all over the floor.
I nearly died of embarrassment. I then had to try and reach the buzzer, and finally a nurse came in. She came in, saw the mess and the look on her face said it all. I kept apologizing and I felt so humiliated and kept saying I am sorry! She said, don’t worry, it happens all the time. The look on her face spoke differently. When she came back into the room, she was fully suited. She looked like an astronaut going into space. The little bit of dignity that I had left was gone. I felt two inches tall. I wanted to crawl into the floor and die!
When I was released from the Hospital a French doctor with a booming voice said to me, listen little girl (I was 58 years old), if you don’t take your medication, I won’t release you from the hospital, and you will die! I have never been so scared in my life.
I was then released and had to go to my mother’s place, because I had to take a truckload of medication, and it had to be given at specific times and my mother was the only one who cared enough to do the job. I must also mention that while in the coma, I developed bed sores and they had to be treated every day. So a nurse came every day, and she was a sweetheart. She gave me special cream and it took a long time to close, because I had been so close to death, and I didn’t heal. I looked like a freak because the triangle hadn’t grown back in, nothing was functioning properly.
Because of the rare fungus on my lungs I needed special advice from a specialist from Hamilton, because my specialist didn’t know how to treat it. I was put on antibiotics for a whole year. The little pills would stick in my throat and make me vomit. Needless to say, my recovery was excruciatingly slow and I thought I would never be “normal” again.
My parents were in their late eighties, and it was too much for them to take care of me, and I couldn’t go back to my apartment, as my roommate was getting married and she was moving. I had to find help, and I had no idea how to go about it. I was so weak and couldn’t do much because I was still struggling with side effects from the medication that I had to take. Someone finally suggested that I should call the Public Health Nurse, and also contact The AIDS Committee in Guelph. The first person that I spoke to was the nurse, Donna. She had the most soothing voice and told me, don’t worry we will help you.
The next contact was the Guelph AIDS Committee (ARCH). The person I had to ask for was Tom Hammond. He was another person that immediately made me feel so much better. I had several meetings with the nurse, as she wanted to know how I contracted the virus. So we had many conversations and I had to give her a lot of information. I wasn’t aware of the fact that they had to try and find out who the person was who infected me.
Tom Hammond at the time was a support worker and I felt so at ease as we had our conversations. He literally took me by the hand, and step by step, led me through the endless process of finding a place for me to stay, which became the local women’s shelter. I could only stay there for 30 days and then I had to find a place to live. Tom helped me with all of that. I was still on the drug plan of my former partner, but that would come to an abrupt halt, and Tom also arranged for me to apply for financial assistance. It is a minimal amount with very little room to get the basic necessities.
I was still in the shelter, and it was coming to an end. With the help of Sister Christine at the Drop in Centre, there was a possibility of housing. I had to go and see her and talk to her. It took a few days to get an answer, and then a call: go and look at a place on Waterloo Avenue. I went to look at it, and the unit that was becoming available was still occupied, so I couldn’t see it. The key tenant, Fran, said there is a unit downstairs that is empty that you can see.
She took me downstairs and as soon as I stepped in, I thought “Oh, I love this place”, she said, “do you like it”, I said, “yes”. She said, you can have this one if you want. I couldn’t believe it. It even had a little garden that I could use. I thought I had died and gone to heaven.
I asked her when I could move in and told her that I had to be out of the shelter and she said you can move in, the middle of the month. Now things are different and they don’t do it that way anymore. I was very lucky. When I moved in, I had a soccer chair to sit on and a futon to sleep on. That was it.
So this is the story about my journey through all this and if it wouldn’t have been for the help of the Guelph AIDS Committee and the fabulous help of Tom Hammond, I don’t know what would have happened to me.
By the way, Tom Hammond who is now the Executive Director of (ARCH) HIV/AIDS Resources and Community Health (formerly known as the AIDS Committee of Guelph) is the man behind all the wonderful work ARCH does, and he can be proud of the fact that he literally saves lives.
That is why I have turned to you to see if I could find financial help for the Agency, which does so much for so many people. My story is one of these stories; there are many more. In order to run ARCH, they are always looking for financial help to keep programs and services running such as food and nutrition programs and emergency financial assistance. The Government has cut back on many funding projects a few years back and so I am turning in a different direction to ask for help and for money.
One of the goals of ARCH, is to engage, empower and build the capacity of people living with HIV by offering services that meet people and communities where they are at and responding to their identified needs. ARCH clinical services provides treatment and care to address the many complex health, social and emotional needs. To learn more visit them here.
This is my story and all the other ones that are depending on ARCH, so as a group we are looking for support.
Iris has launched a GoFundMe to raise money for ARCH. Go here to find out more.