That’s the way Gregory Maskwa describes himself while still in the grip of his pain.
“I was trying to get out of my body, rather than accept what was happening and embrace this as my life.”
You may have heard his name before. If not, a journey through his past is well worth it, and more detailed and fascinating than there are words here to describe.
An accomplished artist, a passionate and devoted activist, and someone who has faced more tragedy than anyone should, he now also faces each day with chronic pain, caused by an extreme condition realted to his HIV called Peripheral Neuropathy.
But his life changed for the better the first time he visited the Integrated Chronic Pain Program from Health Sciences North.
“When I first came, here I was so overmedicated that I really couldn’t function at all,” he said. “I just hated it, so I asked them for help and they were able to bring my medication down and introduce me to new and other medications. The amount of care and concern on their part was just mind blowing.”
And so it is with gratitude that this world-renowned painter communicated to the staff of the program just how much their care meant to him, by donating an award-winning painting called “Things Could Be Worse (Self-portrait with Pain)” to the clinic.
It is a display of the way Maskwa sees his pain, and feels his pain; it portrays what he is not always able to put into words – and what perhaps other patients can identify with, or even use to describe their own pain. The piece shows several characters, but all represent a feeling Maskwa has had – or still endures. There is a man in a wheelchair with legs that appear as tree roots growing into the ground – the only way that Maskwa can describe the pain in his extremities. There are nails driven into his head, representing the debilitating headaches he would experience, cuts and tears and needles, even doctors and caregivers causing pain – but doing so as gently as possible.
“When I was talking about dissociation it’s a strange thing, and I think the part that the painting illustrates is that I am many people,” said Maskwa. “Many little people are coming out of my body, and each one represents a feeling that I have – I’m being poked and prodded – yet I’m being cared for.
"My body is betraying me; the betrayal of the senses, you know that really rings through with me, but the mind and body are interconnected. When you can reach a stillness of your mind, and when you can apply techniques to calm and relax you using mindfulness and your breath, everything kind of falls into place, and instead of being so fractured, you come to accept where you are and also come together as a whole person.”
This is the goal of the Integrated Chronic Care Program at Health Sciences North. It is an inter-disciplinary program, one that offers everything from occupational, physical and recreational therapy, to behaviour therapy, as well as medication information and custom care. And because medicating chronic pain can not only be custom and complex, but also impermanent, there is a pharmacist on staff. It is this approach that has meant the success of the now year-old program – who have just reached 1,000 referrals.
Chronic pain is described as pain that lasts more than six months. But it’s more than that – chronic pain can take over a life.
“It affects every part of a person’s life,” said Jennifer Michaud, clinical manager of outpatient programs for HSN. “It’s not just the physical pain, but it prevents them from doing the activities they want to do. It affects their emotions, how they’re feeling, relationships, their social activities.”
With the more holistic approach to each patient, the clinic can determine the best course of action.
“We really look at the whole mind/body connection, and not just focus on the source of the pain, but how they’re managing the pain,” said Michaud. “That’s the tricky thing with chronic pain — it goes beyond the simplicity of it being about an ankle, it’s then about an entire body.”
The program requires a referral from a doctor or nurse practitioner as the clinic works directly with these primary care providers, and the program begins with an educational base.
“We have patients come in for six weeks at a time, twice a week, and they’re going to almost a ‘pain college.’ They’re doing mindfulness, and they’re going into the gym, they do CBT (Cognitive Behaviour Training) during the six weeks, and once they graduate from that program, they can go on to do group CBT, and it’s been shown as one of the absolute best ways to help people living with chronic pain.”
And as part of "pain college," there is instruction on medications by pharmacist Mathew Demarco.
“I spend a lot of time educating patients on treatment modalities for chronic pain that are medication based – as there aren’t that many – and if I can get a patient to understand these seven options, they can go to their family doctor or their specialists and they can advocate for themselves.”
As Michaud puts it: “We open the toolkit, and teach them how to use the tools.”
This clinic is focused on giving patients the ability to have a partner in their recovery, to gain back the parts of their life that were lost to pain. They are offering serenity to people like Maskwa, giving him the ability to enjoy his work once again and to share it with many others: the room the painting hangs in, once the reception and waiting area, will now be changed to a classroom named for Maskwa, the painter who put his pain into his work, and donated it for all.
“Chronic pain never really goes away,” said Maskwa. “It can have peaks and valleys, but it’s never going to go away. You’re going to have to adjust and live and make your life work around it. I have always been treated with the utmost respect here, and then you learn to respect yourself. I am so grateful, I cannot say that word enough.”
If would like more information about HSN’s Integrated Chronic Pain Program, you can find it here.