A Family Living With AIDS in Sault Ste Marie
~Nicole Hicks

I thought about what I could write in the newsletter. I haven't written an article since my employment at ACCESS. So much has changed for myself and my family since then. I hope that sharing my story can put things into perspective to those who provide services to PHA's and how it impacts on my family. Last year, my husband was diagnosed with AIDS after a bout with PCP and a few months later I was diagnosed myself. During this difficult time, we grieved the loss of Dr. Hui Lee, who had been our only physician. Thing went downhill from then on. We had been on a 6 year waiting list for a Family Physician. Throughout the spring and summer months, we were left to fend for ourselves with no one to prescribe our medications, no doctors, no home support and our health continued to decline.

Nicky's diary

Before I go to bed at night, I stare at my husband as he sleeps and wonder what will tomarrow bring? Which one of us will die first? Which one of us will have to play the role of the caregiver? Is it gonna be a good day? That doesn't seem to happen as often anymore. Did I tell the kids that I love them? Did I apologise to them for having such a hard life? Did I remember to take my medications?

Sleep couldn't come soon enough. It takes forever to fall asleep and my body aches with PAIN. By the time I get to sleep, the alarm rings, it's morning and we must get up to get the kids breakfast and ready for school. My husband and I struggle to decide who's well enough to get up first. It's not easy, who can crawl out of bed and who's the sickest. It's easy for others to say stay on your AIDS meds but they aren't the ones that live with the side effects: vomiting, nausea or adverse reactions to other medications, liver failure and lack of energy..

After breakfast, the kids are off to school to face another day of discrimination from their peers. They find it hard to concentrate or be happy when they wonder if we will be at home or the hospital and the biggest question is who will be there to take care of them. No compassion for my suffering little ones who wonder what life will look like once Mom and Dad are gone and they can see that day coming closer and closer. They are now realizing while they watch us waste away often confined to the couch or bed.How are we gonna stay alive without the supports that we so desperately need NOW but they don't exist.

No Homecare Knowledgeable doctors & hospital staff Hospice facility or Supportive housing Foster care & Respite programs

= Death

I sometimes wish I could just disappear and that death comes quick and painless but then I think of the people I'm leaving behind. A sick husband, 2 daughters, 2 sons, 2 mothers, 2 brothers, and a sister and I feel guilty and saddened knowing that the ones you leave behind feel so much pain. I've watched many friends die over 13 years from PCP, AIDS dementia, cancers, and see their wasting bodies and I know that it is rarely a painless death.

Its always a struggle to get services. The answer is lack of funding, agency understaffing & cutbacks or the services are non existant. Whatever happened to 80's activism? Services were based on needs and people, not money and time. Services consist seeing the doctor who travels from Toronto once every month or two with no contact in between. A $5 foodvoucher per week and a visit from a support worker when he's available between meetings and workshops. If you get sick, it's a trip to ER for a 5 hour wait. I have to be the educator to my new Family doctor who said " I haven't had a patient like you before". So he gets a quick intro into AIDS patient 101 and it still takes me 1.5hrs to get my pain medications refilled, explaining what & why I'm on them. Often getting service means being introduced to students, just another person to tell your history to. It's everywhere, the doctors office, dentist appointments, ASO's, all for the educational "AIDS patient 101" discussion. It becomes a burden that you bear for living with AIDS.

I can recall many horror stories about hospital stays like disclosure of status, blood precautions signs posted outside the door, kitchen staff too afraid to deliver your meal so they leave it outside your room. Many times I would visit my husband in hospital and find that he missed breakfast and lunch. We had to use what little money we had to get him fed. So much fear still in 2005 after 25yrs since the beginning of the AIDS epidemic. It is hard to travel distances to get to the Haven program when I vomit and feel so ill or I can't go because I have no one to take care of my children. It is a seven hour drive and an overnight stay which means expenses like childcare to which I cannot afford.

The humiliation of service providers asking me what I need and hearing them say we don't provide that over and over as I go down the list of needs. Then they say, call me if you need anything. What's the point if they can't and won't provide services needed. Being invited to meetings, not to address my needs and the needs of my peers but to be counted as a stat so agencies look good to their funders. When are people going to step up and fight to get these services in the Sault. So many issues our family deals with and so little energy to fight. If nothing changes and soon, it will be the death of me!!!