This article originally appeared in the June issue of Pathlight. Jackie Woosley is a Pulmonary Hypertension Association (PHA) support group leader who also facilitates the monthly PHA Bereavement Telephone Support Group. She was the caregiver for her adult daughter Karen, who passed away in 2016, and has taken on multiple volunteer roles with PHA to carry on Karen’s legacy and continue a meaningful relationship with the PHA community.

My name is Jackie Woosley. I’m a widow, a mother, a grandmother and a great-grandmother, and I was the oldest of nine children. I was a caregiver to my daughter Karen Woosley, who had PH and passed away three years ago. Also, I was a caregiver to my sister Frances, who passed away a year and half ago from cancer.

I am a co-support group leader for the Orlando Pulmonary Hypertension Support Group and have done that for about seven years. I am also a facilitator for the Bereavement Telephone Support Group. And my latest challenge is to head up a group of crocheters to crochet “Zebras for children with PH” and we are going strong. All these things I do are to honor the life of my daughter. I feel like this keeps her memory alive and helps me to deal with grief. Karen was a strong woman, a mother and a grandmother before she passed. She loved children, so the zebra project is near and dear to my heart.

Karen was diagnosed in 2010 with high pressures and probably functional class IV. She lived in Kentucky at the time and was put on Flolan®. My motherly instincts kicked in – some might say I was a bit controlling. I told her to move to Florida (away from her family and friends) and live with me so I could take care of her. She was my first child and will always be my child. This was after reading everything about PH on the internet and crying for three days. I knew I was the only one who could take care of her like she should be taken care of. We found a PH specialist in the area, and he told us about the support group that he had started. We began attending. I believe it did help Karen and I know it helped me tremendously. The group became our second family.

In 2011, the group leaders at the time, a young couple, decided to give up being leaders and the group’s founder Dr. Tarver asked if anyone else would be interested in taking over. Melissa Quevedo and I raised our hands. I told Karen she would have to help me, and she even served as a co-support group leader for a while. This PH family was so helpful and comforting during and after the passing of my daughter. They rallied around me and helped me though the dark days.

Karen and I went to PHA’s International PH Conference and Scientific Sessions in Orlando in 2012, and she really enjoyed it. I volunteered and worked most of the Conference. It was so much fun, I decided to volunteer again in 2018 when the Conference returned to Orlando. It was a blast, but it was also a reminder of the one before when Karen was with me. It was in the same hotel. I guess it is my nature to volunteer. It gives my life purpose, and I receive so much joy in helping others.

I was recently asked to facilitate PHA’s Bereavement Telephone Support Group, and it took me a couple of days to decide that, yes, I can do this. I have no grief counseling training, only the experience of losing my husband, my father, my daughter and my sister. Having a safe place to talk about loss, guilt, anger, love and, yes, even relief – as strange as that might sound – is a blessing to me, because not only do I facilitate, but I contribute and receive and learn and am working through my losses also. It is a healing process to share, and I would like to invite anyone who is grieving to join the telephone support group.

I believe volunteering is in my DNA and that it helps me to carry on and give purpose to my life – and a way to put my memory of Karen into meaningful action.