Foreword to the new miniseries (by Lars Avemarie)
I started the “Pain Expert series” back in 2014. The series has had entries with some of the most esteemed academics and researchers in the pain field, like Moseley, Louw, O’Sullivan, Marchand, Thacker, Nijs, Nachemson, and Professor Melzack. I have also tried to cast light on the clinicians that work at the forefront of this new field. Clinicians that show us the way by “leading by example”. These clinicians work on the clinical implementation of this research into the pragmatic treatment of people with pain.
The current pain research is, to a large degree, underutilized by clinicians. Clinicians can learn a lot from reading pain research and from listening to pain researchers. To treat pain effectively, we need to know what pain is, and we need to understand what pain modulators there are, and the strength of the modulating factors. We need to make clinical reasoning based upon the current scientific consensus, and so far, not enough of this is being done!
Listening to Joletta Belton and Keith Meldrum’s talk at San Diego Pain Summit 2020 made me realize something. We can learn a lot about pain from pain researchers, but there is another group of people that we can learn a lot from, as clinicians. That is people who are experts in the lived experience of pain.
So the next installments of The Pain Expert series will be from experts in their own right; experts in the lived experience of pain.
Without further ado, here are Keith Meldrum’s story and advice to us clinicians.
Like many of the reported 20% of the global population that lives with persistent pain, my experience with pain was precipitated by a single event. For me, that event was a near-fatal motor vehicle accident I suffered in August of 1986, at the age of 16.
I grew up in central British Columbia, Canada, and was raised in a supportive home. My older brother and I were taught that it was absolutely unacceptable to even consider drinking and driving; my parents said they would come and get us if we ever needed a ride and they would not be mad. Unfortunately, at the young age of 16 I was too young to make good decisions and after spending a night camping with my friends and co-workers from my high school at McDonald’s’, I did end up drinking and driving. I was dealing with the emotions only a 16 year can experience when his girlfriend of over a year moves to the other side of the country (her father was transferred for work). Despite everything I had been taught by my parents, I spent most of the evening drinking and I slept for less than two hours when I then I got in my car to drive from the campground, located 75 kilometers north of town, to go to work for my morning shift at McDonald’s.
I never made it.
It was a cool August morning, which is not uncommon for central British Columbia, and when I started the car, I rolled up the windows and turned the heater on. I was driving a 1972 Plymouth Duster which had separate lap and shoulder restraints and I remember that before I entered onto the highway, I only put on the lap belt restraint. I don’t remember much after this, but due to the alcohol and the lack of sleep, I fell asleep behind the wheel approximately 35 kilometers north of town along an elevated right curve of the highway. I drove straight off the highway and rolled my car end over end multiple times down the embankment.
As I was asleep, I had slipped down in the seat and the lap belt was therefore across my abdomen and not my hips as it should have been. Due to the rolling action of the car down the bank, this caused me to snap back and forth over the lap belt thereby suffering significant internal trauma as the force tore through my abdominal wall and my large and small bowels. This left me with profuse internal bleeding in which I lost a significant amount of my blood volume.
I was able to extricate myself from the car and despite thinking I had crawled many meters away (I recall thinking the car would explode), I made it to the rear bumper; barely five meters. I was fortunate that my accident was witnessed by people who were headed in the opposite direction. As this was a rural highway, early in the morning, and not know to experience a lot of traffic if they had not witnessed me leaving the highway, I would have died at the bottom of the embankment as my car could be seen from above and the extend of my injures would not have allowed me to survive for long. As a result, they were able to call for an ambulance and I was transported to the hospital and taken in for emergency surgery immediately.
While I was laying on the ground waiting for the ambulance to arrive, I was experiencing unimaginable pain; it is indescribable. I knew I was dying. I could feel it and I begged to die as I wanted the pain to stop. I did not fight to live. I begged to die.
I didn’t die that morning and upon arrival at the hospital, I was taken into surgery immediately. The surgery was nearly seven hours long and when it was over the surgeon told my parents that I was going to live but that I was going to have some problems later in my life. I was then placed in the pediatric special care unit for nearly two weeks, where for the first few days the nurses had to gently shake me from time to time and tell me to breathe.
When my Mom asked when this was happening, they told her that I was trying to die but not to worry as they wouldn’t let that happen.
Following the initial trauma surgery, I required additional surgeries over the next three to four years for complications from the trauma. This caused me to miss half of my grade 11 and 12 years of high school. The principal told me to stay home and focus on my health and getting better.
Over this period, I noticed that even though I was having surgery to “fix” things, I still had ongoing, often debilitating pain. The pain would get so bad that I would have to be taken to the emergency room where I was either treated with pain medication and then released or admitted to the hospital for a few days for pain management. However, despite all the surgeries, the pain never went away. I was confused by this and I assumed that all I needed was the right surgery to finally make all the pain go away.
When I was 18 or 19, I had an appointment with my family physician about the ongoing pain and what we could do about it. He looked at me and told me that they had “fixed everything that could be fixed and that this was all in my head”. With the statement, I was effectively dismissed from his care and given no direction, support, or advice on how to manage pain. I was left on my own.
That interaction completely shook me as I was left wondering if this was all in my head and if I was making this all up and, if I was, why would I do that. I was confused, angry, and lost.
Layered on top of this was the fact that at no time was I offered any psychological counseling about living through a near-fatal car accident. At the time of my accident, I knew I was dying, and I laid on the ground hoping and begging to die as the pain was so intense. Over time, I struggled with that as I felt I had given up at that moment that I was not strong enough to fight for my life. I also struggled as I felt it was all my fault and that everything that was happening to me was my fault as I had been drinking the night before and slept less than two hours. Maybe I deserved all of this.
I was angry as the life I envisioned a healthy, strong 16 year would not unfold as I expected and I was left unable to do many of the things I enjoyed and I was living with pain every day; pain that I was told was all in my head as I had been fixed. I was confused and through all of this, I become overly focused on not letting my accident and the pain define who I was. I felt I needed to prove to everyone, including myself, that I was much more than this one event and all that it brought about it my life. As such, I would push through my pain, push myself to do things that would increase my pain as I was almost obsessed with proving that I was not my pain.
All this did was cause more pain. It became cyclical.
For 18 years I sought out medical providers and interventions for that the right procedure to make the pain stop. I was ignorant of the complexities of persistent pain and that it was much more than a biological issue. I was living with neuropathic pain and I had no idea what this was as no one ever told me that.
In these years, my interactions with the health care system ranged from complete dismissiveness to working with some very well-meaning practitioners. I would find physicians that felt that they could help by way of different interventions. I received blocks in my left abdominal wall that were not very successful as they only provided minimal relief and for a short period. After a few rounds of this with minimum success, I was advised that this was not sustainable, and he was no longer to help. I was left with no direction or recommendations.
I continued to stumble through the health care system, mostly by way of emergency room admissions for pain control as I pushed and fought my way through life. An emergency room is one of the least effective places to go when dealing with a pain crisis; it is often stigmatizing, judgmental, and dismissive. However, when there was nowhere else to go and I needed help, I would go knowing full well it was going to be an unhealthy interaction.
This was my life trying to live with persistent pain until 2004.
In 2003 I was working with an anesthesiologist who ran a pain clinic out of the hospital in my city. He was providing me paravertebral nerve block injections, and, like other interventions, these had minimal and short-term effects. In what turned out to be the final block procedure, the anesthesiologist went a little too deep with the injection, causing a partial left pneumothorax (partial lung collapse), As a result of this event as well as the minimal effects of the nerve blocks, he felt that this was no longer a viable option.
However, instead of ending treatment and not offering any other options, he mentioned that I may want to consider spinal cord stimulation (neuromodulation). He briefly explained the process, somewhat in an off-handed manner, and said it may be something I wanted to look into. After discussing it with my wife, we agreed the this was something I needed to consider, and he referred me to the only interventional pain clinic in my province offering this. This clinic was part of a large hospital in Vancouver, British Columbia, approximately 800 kilometers from where I lived.
All potential spinal cord stimulation patients must go through a screening process to ensure they are a viable candidate for the procedure. Following the referral, I attended the clinic for the initial consultation which included an in-take meeting with one of the pain specialists that involved a detailed review of my medical history. After 18 years I was able to recite my history by rote and I was going through this process, once again, I realized that the doctor had stopped writing. At that moment I became very concerned that I had said something wrong, hadn’t told him what we wanted to hear, or he already decided that I was not a candidate I would be, once again, left on my own. But that didn’t happen.
When I turned to look at him, his pen was down, and he had said five words that turned out to be one of the defining moments of my life.
He said,” It’s okay, we believe you”.
While I had encountered some physicians who were well-meaning in those 18 years, I also experienced a significant amount of dismissiveness and disbelief as to the extent of my pain. In that moment, having my experiences with pain over the last 18 years validated, turned out to be a turning point in how I would be able to start to consider my pain and my role in learning to live better with it.
Ultimately, I was deemed to be a viable candidate for spinal cord stimulation and while I was in the hospital for two weeks undergoing the trial and then the permanent implant, I had time to reflect and consider my life up to that time with pain. Part of this was listening to a tape on relaxation and breathing and its effects on pain. Initially, I was not interested in listening to it as I had convinced myself that there was no correlation between pain and stress, therefore relaxation had no role in pain management, and surely breathing did not affect pain. However, near the end of my stay, I decided to listen to it as I realized that what I had been doing to live with my pain was not going very well and maybe I needed to be open to different ideas.
Change did not happen quickly as it took months, in fact years, for me to start to understand my role in managing my pain as I put some of these new self-management practices into effect. As I did, I found that I was seeing some minimal positive results, which encouraged me to keep trying and sparked my interest in learning more about pain and the relationship between the mind and the body. While the changes were small and incremental, they were enough to start to shift my default position of pain management away from fighting and anger to one more of openness and curiosity. My curiosity led me to start to research and read about pain science and the biopsychosocial model and this started to clarify some things for me. I started to understand the role of psychological factors and this influence pain and this helped me further understand that my focus of trying to find someone to “fix” my pain and my anger at the health care system for abandoning me and my anger at having caused the accident in the first place were contributing to my pain.
As I started to learn more about the complexities of pain and the impact it had on society, I understood that so many other people were experiencing what I had and this motivated me to get involved in helping others. In late 2011 I was fortunate to be appointed to the Board of Directors of Pain BC (https://www.painbc.ca/), a non-profit organization in British Columbia, Canada focused on enhancing “the well-being of all people living with pain through empowerment, care, education and innovation”. I served on the Board of Directors as the Vice-Chair and the Chair of the Governance Committee until the end of my term in May of 2018 and during those six-plus years I was able to help forward several initiatives and enhancements to better help and support people living with pain. My volunteer advocacy work with Pain BC was extremely meaningful to me and reinforced my desire to do what I could to help raise awareness of the complexities of persistent pain and advocate for system change.
Following my time with Pain BC, I knew my advocacy work was not done, but I wasn’t sure what my next steps were going to be. 2018 was the year for the International Association for the Study of Pain (IASP) Work Congress on Pain. After reviewing the Congress schedule, I sent an unsolicited email to IASP offering my thoughts on the importance of including those with the lived experience of pain at the Congress. That email led to an invitation to be one of three people with lived experience to present at the Congress as well as an appointment to the then newly formed patient advocacy group, currently called the Global Alliance for Pain Patient Advocates.
Since 2018, I have been fortunate to be offered several opportunities to present at local, national, and international conferences on the lived experiences of pain and offer my experience and opinions on the importance of integrating patient partners in research and education. I have joined a research team from McGill University of Montreal Quebec, Canada on a funded research project on advancing the conceptualization and assessment of pain-related suffering.
It is necessary and important that health care providers, therapists, and clinicians, understand the depth and breadth of one’s pain as persistent pain is not a singular biomedical, or biomechanical issue. Persistent pain is highly disruptive and deeply affects the totality of one’s life.
Since 2004, my life living with pain has improved as I have learned about the science of pain and my role in how to help myself live better despite pain. As I live with persistent neuropathic pain, I have pain every day but it has become less of a daily focal point of my life and I no longer search for a panacea. Instead, I have learned, and try to follow some of the fundamental principles of effective self-management:
• Willingness and acceptance
• Development of a support network
• Pacing and planning activities
• Relaxation techniques
• Meaningful movement or exercise
However, for a person living with persistent pain to be able to best help themselves through self-management, they require support and understanding from their health care providers; this is termed supported self-management.
For health care providers, therapists, and clinicians this involves:
• Validation of the person’s pain
• Listening to patients and allowing them time and space to tell their story
• Understanding that words used in the health care system matter and have an impact on people
My past and my ongoing experiences with persistent pain coupled with opportunities to present at self-management programs and health care provider education conferences and to be involved in pain research as an equal partner allow me to learn to live better despite my pain.
I want to take the time to thank Keith for sharing his remarkable story; I truly feel that his story can help us become better clinicians. Please share Keith’s story; I think we could all learn from it.