Feel the pain and do it anyway
Maxine Pye’s experience of excruciating pain led to a new career helping others cope with it and death.
Now 44 and the family support team leader at North Shore Hospice Trust, Pye has lived with complex regional pain syndrome (CRPS) since 1996. Overnight, the upper left side of her body was paralysed. Back then, she didn’t know what caused it but now she puts it down to an acupuncture needle hitting a nerve.
Pye’s husband, Phillip Howe, became her caregiver. She could not work for two years as they adjusted to her condition.
She spent many hours contemplating the past and future. That sort of contemplation is something the patients at the trust’s hospice can identify with.
The trust is a not-for-profit organisation providing up to 10 in-patient beds for people who need 24/7 respite care, or help with symptom management, or who are terminally ill and choose to die at the hospice. It is a palliative care provider for the Waitemata District Health Board.
“My dad died the day before my 19th birthday in July, 26 years ago,” Pye says. “Back then, there was no hospice around.
“After his death, I asked if I could join the Cancer Society as a volunteer. At that time, they had a two-year step-down period (after experiencing the death of a loved one) and I was only 19, so they were concerned about that.”
In those two years of waiting, Pye travelled and her wish to work with the society or something to do with illness and grief was overtaken by corporate life.
She became an office manager. Nonetheless, “I could still always feel the disease and death thing pulling me.”
After her experience, Pye needed help washing and dressing as well as special equipment to cope with everyday tasks such as cooking.
“Living in pain is exhausting and it took up a lot of the day, trying to work through that pain.”
The loss of independence hit her hard. “Being the positive person that I am, I thought that it is my opportunity to do something along the counselling line and in the grief area,” she says.
But she could not sit or concentrate for long as she was having pain spasms. Pye did a six-month course in community studies over two years at AUT’s Akorangi campus.
“While I was doing that I came to the hospice to start volunteering in 1999. I wanted to see if that was really the area in which I wanted to go in my career.”
From there, and with the hospice counsellor’s help, Pye enrolled at Unitec for the three-year, full-time course Bachelor of Social Practice, majoring in counselling.
“Because of my condition, I couldn’t do it over three years. I did it part-time over four.”
She graduated with a diploma of social work and a degree in counselling and, in September 2004, began work as a counsellor/social worker at the hospice.
Pye is convinced the accident brought an inevitable career change forward.
“If I hadn’t had my accident, I don’t know if I would have got here as soon as I have, but I think I would have eventually got here, because I love it.”
Turning 40 often helps people re-evaluate their lives, she says. “The accident forced me and my husband to do that earlier than the natural scheme of things.
“I live in constant pain but, because of medication and the wonderful pain clinic at Auckland Hospital, I have techniques within me so I can control it. I never dreamed that I would be back to doing five days a week and loving it.”
While many people may regard those who work in palliative care as especially caring individuals, Pye believes it takes special people to do whatever job they are doing.
“I could not be a palliative nurse, those girls are amazing. Nursing is about getting somebody better, while our nurses are making their patients as comfortable as they can in a physical space.
“I love talking and listening, so I am better in my role.”
The hardest part of Pye’s job is if a family asks her to sit with them when a family member is dying.
But the best thing is hearing people’s stories.
“For me, I feel extremely privileged and humbled that people share their stories at this time in their lives and allow me to do my job.
“It never ceases to amaze me how we are welcomed into their lives.
“A lot of people at this time can stop communicating within their family. We can go and help reopen that again. People just need to offload and talk about what is going on for them, if they are the one that is dying or surviving, especially the ones that are surviving, how they are going to survive and adjust with their loved one not there.
“On the social work side, finance can be a big issue, especially if one has to give up work. It’s about helping them network to the right agency or group, network back to their community. At times like this, people can forget who is around there for them and it is part of our job to help them open it up again and help them see that.”
Self care is an integral part of Pye’s role.
“You have to be a type of person who is really on to the self-care when you are surrounded by death and dying.”
Plus, she has the challenge of coping with her own constant pain.
“I really try to enjoy life. As you walk in here every day, it is a constant reminder.”
She loves four-wheel-driving, boating and fishing, plus cooking, drinking and enjoying good company.
This week is National Volunteer Awareness Week.
For more information, see www.volunteeringnz.org.nz