The Daly Edition

Rosemary Daly was one-half of the I.H.S., a team supporting people with haemophilia who had been infected with HIV and/or Hepatitis C and their families. Rosemary was volunteering with a group called Gay Health Action when she was approached about the role of AIDS Co-ordinator with the Irish Haemophilia Society;

“It happened that I was very interested in HIV and Aids. While working with Gay Health Action someone told me about the job with the I.H.S., they had read about it in their magazine and that’s how I started off. Obviously not knowing where it would end up.”

Prior to working with the Society, Rosemary had no direct connection with haemophilia so I was keen to find out what drew her to the job and discovered that haemophilia and HIV had crossed her path before while working in a previous role;

“As a youth worker in Coolock, I decided to run a programme in the school for the students so that they could be educated on HIV and AIDS, which was an issue that was in the media a lot but that nobody really understood. I got medics and the Department of Health involved and then I went to find people who were in fact HIV positive at that time and one of those people was a gentleman with haemophilia. He came to the programme and spoke about his own circumstances and I was just struck by his story. I ran the programme to educate the students, but the impact it had on me was immense. From the outset, I was just outraged at what was happening.”

In the 1980s, HIV was prominent in the media. People did not know much about HIV and AIDS and there was an immense fear among the public and in particular, in the haemophilia community when the contaminated blood scandal became apparent. Fear of the diagnosis, fear of people discovering their status and fear of dying.

At a time when the haemophilia community was shaken and fearful, I assumed it must have been difficult for Rosemary coming in to the role as a new staff person. However, this was not her experience;

“I had an amazing tool and that was Margaret King. She knew these people, she nursed these people as children so that was my introduction. So I had a very good person at my side and I was actually working on the back of their trust and love for Margaret King.”

The fear of their diagnosis being discovered stemmed from a lack of awareness. There was very little information on HIV at the time, people believed you could catch HIV from a teacup. With this lack of awareness, came a fear and unfortunately a stigma. This was something Rosemary experienced herself and she told me of a time her son was not allowed to play with another child, because the work Rosemary did with people with HIV was well known.

However, as the campaign for recompense began and the Society became involved in advocacy, the plight of people with haemophilia became known publically and there was a lot of support from the general public.

Unfortunately, recompense and support was just a minor part of a HIV diagnosis. At that time there were no treatments for HIV, it was a death sentence and this was the harsh reality affecting people with haemophilia, both adults and children. Soon, the Society began to lose members to the disease and Rosemary’s role changed from just supporting people with HIV. Following the death of a person with HIV and/or AIDS, there were restrictions on the care of the body following death which meant that families were being denied the opportunity to have a wake for their loved ones. Not only that, families were afraid that the lack of a wake would arouse people’s suspicions about the cause of death. Rosemary and Margaret King decided they would help alleviate this problem. They began going to the homes of members who were dying and once they passed, they would lay them out for a wake.

“This was a decision Margaret and I made ourselves, it was totally intolerable and was adding to the families’ suffering. However, when we made the decision, I didn’t anticipate my part in this process. As Margaret was a nurse, I assumed she would take on the role and I would be there to lend her support, but she brought me in very naturally and made no big deal of it so to me it wasn’t a big deal.”

However, it did and still does carry some painful memories;

“The toughest part of my job was laying out the children. It was just absolutely horrendous. I knew all the football strips of all the clubs that were popular at that time. It just didn’t make any sense. The anguish and the grief of a mother in particular, burying her child. That used to just tear the heart out of me and still does when I see them.”

The Daly Edition Picture 2

Having Rosemary and Margaret care for their loved ones in their final hours and indeed after death must have been a huge comfort and support, but there was a downside to this pivotal role that they played;

“Margaret and I would know when people were deteriorating and we would approach them and ask them if they would like us to make arrangements to bring them home. However, we then became associated with death. A mother said to me, long after her son had died “I hated seeing you coming because I knew what it meant”. It was a double-edged sword.”

Listening to Rosemary, it struck me as to how ordinary she made the task seem, but in reality it must have been so hard as these were not just people, they were her friends;

“I didn’t have any family member who was infected or who died, but I had a huge amount of friends that became that way. I remember every anniversary of those that died, it is engraved in my brain.”

The secrecy that people with haemophilia infected with HIV kept was not just to the community, but indeed within families. Children were unaware of their parent’s condition, parents unaware of their adult children’s diagnosis, siblings had no idea why their brother was ill. Having to face such grief, but remain in control to keep a secret must have been overwhelming. The lie perpetuated every part of their lives. Indeed, this secrecy is something that is still present today. Rosemary explained that she keeps in touch with a lot of families who faced this immense tragedy and indeed those family members who were unaware of the cause of death at the time.

“With such a massive secret there is bound to be anger. Many family members are angry that they didn’t know and were unable to be supportive, they would have liked to have supported the person and their family. But you don’t know how people will react until you tell them and again this was a time when people were living in fear and couldn’t talk about it.”

As is the case with the Society now, the support the I.H.S. provides is for the whole family, not just the person with haemophilia. When a member had passed, Rosemary continued to support the family both individually and as part of the organisation.

“Some people withdrew from the Society following a death. But for a lot of people the Society was a place where they could go and talk about their experiences and meet people who knew their loved ones.”

During the campaign for recompense, Rosemary was there to support individuals living with HIV and families of those who lost someone to HIV. Rosemary recalls about that time:

“It was tough, trying to bring two or three hundred people down a road that is trying to get one size fits all in compensation or a tribunal report everybody is not going to be happy with and everybody wasn’t happy. The first time with the recompense, the parents of the children who died got a much lesser sum than anybody who was alive. And I remember being in that room and trying to explain this to parents. How do you explain it to them that your child is worth less because they are already dead? I’ll never forget that, that stays with me, that room, that day, that hour.”

The haemophilia community was still regrouping when the Hepatitis C contaminated blood scandal came to light;

“I just couldn’t believe this was happening. This was just a nightmare in so far as that hadn’t these people and these lovely families, men and children, wives and sisters got enough to deal with. It brought everything back up”.

The Society again began a campaign for advocacy and began supporting the members as they had previously with peer support meetings and educational conferences. However, through all the challenges facing people with haemophilia, Rosemary wanted to make one thing clear to me, the community was strong.

“It wasn’t all doom and gloom, there was a lot of laughter. Some people will say that those HIV and Hepatitis C weekends we had were the best craic ever. You could have looked into a room on a Saturday night in any of the hotels we used and heard the most fantastic sing song, the greatest craic, people standing on stools singing and dancing and no one would ever know what was going on for that group of people. Because they were allowed to have a laugh and they were among people who they knew were in the same boat as themselves and they could trust, at the same time as receiving information that was vital to them. So there was all of that, but there was a lot of messing, laughter and a bit of madness thrown in as well.”

Rosemary supported people with haemophilia and their families through times of extreme grief. Often away from home for several days at a time when a member was dying, I wanted to know how it affected her and indeed who supported her during those dark times.

“At that stage, I was younger. It didn’t impact on my life then as far as I felt. As I get older and have more time to reflect, I would do it all again, but I do realise now I did miss an awful lot of important events in my own children’s lives and it potentially could have affected them and in some instances they really would have preferred I was at home, but they realised what was happening for somebody else.”

In 2002, having worked with the Society for over 13 years Rosemary left the I.H.S. A decision she admits was hard, but was vital.

“I had to leave, I was absolutely mentally and physically exhausted. I went to France, and for about five or six weeks, my husband will tell you, I just sat there and cried, I just cried and cried and cried and cried. It was an outpour of all the grief.”

Although the right decision to leave, Rosemary admitted she missed the Society;

“Yes, I miss it like a family member who has just gone away. There is something missing in my life, that is the god honest truth. There is part of me that was never made whole again since leaving.”

It is worth noting that the I.H.S. is never far from her mind, she keeps up to date with the Society’s newsletter, keeping a special interest in the advancements of treatment for Hepatitis C. She may not work for the Society, but she is still putting the members first;

“I don’t tend to go to functions or events, because I have this strong feeling that, rightly or wrongly, my popping up is just bringing back too many bad or sad memories. That’s the reason why I don’t go, not because I wouldn’t enjoy it or wouldn’t like to meet people. I just want to give people the freedom to be without me popping up and bringing back painful memories.”

Indeed, Rosemary still thinks of and worries about the haemophilia community;

“I do worry about the effect all this had on the children whose fathers died, I see first-hand that they have lost their Daddy who can never be replaced and who was and will continue to be missing forever in their daily lives and all the special occasions. For girls who are carriers, this is particularly poignant as they seek medical advice from the very hospitals where their fathers received the contaminated blood products. As for the parents who lost their children and their grown up sons, many now in their old age it has been a long lonely road of what if… it never happened.

For the brothers and sisters of those who were taken before their time, the loss of the love and friendship of a brother and the uncle for their children remains. For the wives and partners, the loss of sharing the joys and woes of childrearing, or just having them there to grow old with, the pain continues.

Thankfully advanced treatment means that many of our men are living well. Treatment can be tough, of that, there is no doubt but for all who love them, we are so glad that they are still here. For the children with haemophilia the future is bright, that is music to my ears. However, we must never forget that the sound of loneliness, grief and fear is often silent. In the efforts to embrace and ensure a bright future for the children, let us keep our ears and arms open for all those whose suffering and loss paved the road to this bright future.”

It says a lot about a person to put the needs of a community before yourself, but for Rosemary it is just her nature. This was never more apparent than when I asked her what she felt her biggest contribution to the Society was;

“Well I hope more so than I think, that they felt I was just there for them. That’s it, just there, as a human being at the same level that they were at, just to be there.”

A woman, a mother, a friend, a support, an inspiration. There are so many words that could be used to describe Rosemary Daly that not even a dictionary could contain. I sat with Rosemary for over an hour just listening. There were tears as she recalled some of the hard times, laughter as I discovered her unique sense of humour and shared recollections of friends no longer with us such as Fr. Paddy who we both agreed gave the best hugs.

The contribution Rosemary made could never be summed up in words, but two words that are needed and fitting are Thank You.

Nuala Mc Auley                                                                                                        September 2014