“Lately, I have been having so many days when I have been stranded in bed,” said Hayley McDougall, toying with the edge of her sheet.
“This isn’t the kind of life I thought I would have, I’m not the kind of mother I thought I would be. I feel like I’m missing in my husband’s and daughter’s lives a lot of the time. They are what keeps me going but so often, I am not there for them.”
McDougall, 30, has had what is called new daily head pain for 10 years. It started suddenly one day when she was at university and hasn’t stopped since. The pain, centred in her temples, used to rate a five or six out of 10 but for about the past year, it has been 10/10 most days, leaving her barely functioning.
She took part in a three-year Mayo Clinic study that implanted neuro-stimulation electrodes at the back of her head and offered some distraction from the pain. The study, which included a number of other participants, showed that the implants definitely helped with pain but they had to be positioned exactly where the pain is felt.
For McDougall, that means another operation to feed wires from the implant across her forehead from temple to temple. Neuro-stimulation is used for other kinds of pain in Canada but not for head pain and that means the operation is not paid for by the B.C. Medical Services Plan.
Doctors recommended the operation about a year ago but McDougall found out only recently that funding was denied.
“There is definitely a need for the medical system to change but it changes too slowly for people’s needs. I am going to fight for the change if that is what I have to do, so that this will mean something not just for me and my family but for other people in the future,” she said in a soft voice.
“My goal for life is just to be able to be a part of life and at this point that seems like a long stretch. I think I, and others, have a right for that to be attainable. Chronic pain is often overlooked because there is not much that can be done for it in the hospital. I choose not to take up a hospital bed. I have been told that other people at this level of pain for so long sometimes take their own lives but I want to be here for my daughter and my husband (Mike Halliwell) and family.
“I am healthy otherwise and the risk of the operation is worth it for me. I have no quality of life now. My life is passing me by. I have good hopes that this could get me to a seven out of 10 or eight out of 10 pain level. I could function with that.”
The operation, at the Mayo Clinic in Arizona, could take place within a few weeks once the funding is in place. The extended family members have been doing as much as they can but McDougall’s mother, Kathy Goldie, said they are now at a breaking point, financially and emotionally.
“Hayley’s life is being reduced to that bedroom. When she has a rare good day, which is an eight out of 10 pain, and eight out of 10 would put most people in the hospital, we do what we can and take lots of photos so we have those moments and memories,” she said.
“Nothing makes a difference to how bad the pain will be on any day. We really didn’t think that MSP would be so reluctant for her to have this operation which is based on a well-respected study and a method that is being used for pain in other parts of the body. What is the difference? It’s only a matter of inches.”
The family decided to go ahead with whatever it took to get the operation, which costs about $100,000. (In the United States, you get an estimate to help decide if you can have an operation or not).
“It’s hard to send out emails to everyone you know and bare your soul and ask for money but doctors have told us she’s deteriorating enough that there’s not time to wait for MSP or a miracle. We are very grateful for the generous donations made so far but there is still a long way to go. Our goal is for Hayley to be pain free, or have reduced pain, so that she and Mike and Sloan can be a family that doesn’t need us in this way although we know that we will all still always want to be part of each others’ lives.”
They have also made a video with McDougall, available at http://www.giveforward.com/hopeforhayley or by going to giveforward.com and searching for Hayley McDougall.
Donations can be made by cheque to Hayley McDougall or Kathy Goldie and sent to Box 1814, Vernon, B.C., V1T 8C3, or dropped off at Goldie’s office at General Surgery Clinic, 3107-35th Ave., Vernon.
