I Am So Much More Than My Pain
Pookie is a 74-year-old woman from British Columbia (BC), Canada who experienced a career-ending allergic reaction to a work-required medication in 2002. She was diagnosed with Stevens-Johnson Syndrome (SJS), which is a rare, acute, and potentially fatal skin reaction that is usually caused by taking certain medications. As secondary complications of SJS, Pookie developed complex regional pain syndrome (CRPS), which can be a very severe and disabling pain condition, and burning mouth syndrome (BMS), which involves an ongoing or recurring burning in the mouth. Twenty-two years after the reaction, Pookie continues to experience burning pain in her hands, face, and throat, which limits her ability to eat, speak, and use her hands. Roughly 10 years ago, Pookie was ready to seek out medical assistance in dying (MAID), but discovering the practice of Taoist Tai Chi changed the course of her life. Through this practice, as well as counselling, supportive interventions, and education, Pookie has connected to an embodied understanding of herself as so much more than her pain. She sees her challenges with physical pain as the platform for her ongoing healing and growth, and through this healing work, Pookie feels like she has become a more authentic version of herself. Even with all the challenges that she still faces, for Pookie, living as her authentic self is living well.
The Impact of the Past
When Pookie was 3 years old, her father contracted polio, which resulted in him becoming a paraplegic and requiring a wheelchair for the rest of his life. The impact that this event had on Pookie’s upbringing still echoes in her life today. Overnight, she went from living in a small town surrounded by nature with a stay-at-home mom to living in the city close by the hospital where her dad was with a working mom who needed boarding foster assistance for Pookie and her 5-year-old sister during the week. In navigating her own serious health challenges for over 20 years, Pookie has drawn inspiration from how she saw her mother and father persevere through these difficult times. She shared with me: “I was always very aware and felt my parents’ enduring love for each other, strength, and determination despite many, many challenges through the years.” Pookie believes her lessons in resilience, compassion, and gratitude began during this challenging time in her family’s life. In witnessing the way her parents persevered in the face of her father’s health challenges, Pookie also saw an example of how she could persevere in the face of her own challenges (see Figure 1).
I’m an Endurance Girl. In her journey with persistent pain, many different challenges have required Pookie to harness this capacity to persevere that she learned from her parents. An important example is the extent to which she has had to advocate on her own behalf. Pookie worked as a critical care nurse educator, and she sees this professional background and her capacity to persevere as essential parts of her successful self-advocacy. Pookie told me:
Again, my professional career, my ability to document, be factual, allowed me to know how to work with these various agencies to advocate effectively for myself. And I am a bit of a dog with a bone. In all my athletics, I did all endurance sports, long running, I’m not built for speed. I’m an endurance girl. (see Figure 2)
As an example, different interventions that Pookie has tried over the years, and very costly interventions that currently make quite a significant difference for her, were not initially covered by the organization in BC responsible for compensating and rehabilitating injured workers. Through her self-advocacy, however, Pookie was able to get funding for these interventions.
Financial Support. In addition to funding for interventions, Pookie’s insurance provided her with wage replacement until she was eligible for her pension and with various other ongoing supports. This financial stability has been a huge factor in living well for Pookie, and it has made important interventions and other assistance financially accessible. For example, because of the burning pain in her mouth, Pookie has not been able to eat for three years. She requires tube feeding, and the cost of this support has been covered for her. Pookie made a point of acknowledging that not everyone living with pain that restricts their ability to work has access to the financial support that she does. She is deeply grateful for this support and acknowledges the essential role that it plays.
Healing from the Situation. While Pookie’s father’s health challenges allowed her to witness the strength and determination of her parents, they also left her and her slightly older sister without the kind of emotional support that young kids need. Pookie shared her perspective on this with me:
Yes, our parents loved us but with my sister, we can reflect together now. We were conflicted as we became adolescents because you know what, they did great, but dad was always first and he had to be. And that left us with wounds. We couldn’t fault them, they didn’t abuse us, but you know what I’ve come to realize, the situation abused us.
Pookie told me that there was a time when she wanted to be a bit angry with her parents about how the situation growing up impacted her and her sister. Now, however, she is able to compassionately hold two truths: her parents did the absolute best that they could in the situation they were in, and she and her sister have wounds from being in that situation.
For Pookie, these wounds manifested as a tendency to sacrifice her own health and wellbeing to do as much as possible to take care of others. Pookie wrote to me:
I found myself excessively caring for others while neglecting my own well-being and sense of grounded self-esteem. In my early mid adult personal life, I finally recognized this repeating cycle of “skewed” personal behaviors were the root cause of truly not really even knowing who I was, other than being attached to my career and sports titles and accomplishments, etc. I finally got the professional help I needed to gradually start to change, gain and balance my sense of self, self-love, and esteem! This provided the foundation for me to move forward with a healthier perspective in my personal life. Fortunately, the help I received to attain a more balanced personal life perspective came well prior to the career ending medical events of 2002. In reflection now, this help was “life changing” for me and has provided the basic foundation of how I have handled, managed & further evolved in all ways during the subsequent Challenging Chapters of my Life! I do not believe that I would be alive today if I had not first done this essential foundation work re: self-awareness, etc!
Pookie shared more with me about how central her career had been to her sense of self: “When I lost my ability to be that critical care nurse, drive a car, own a home, I stood naked, and I didn’t even know who I was. I thought my life was over. So, I did serious counselling.”
For Pookie, the counselling that she did to foster a strong sense of self has been an invaluable part of her success in navigating these health challenges. She does not believe she would have been able to handle everything that has happened since 2002 if she had not done all of this personal healing work beforehand. To understand Pookie’s experience and how it relates to healing from childhood wounds, it is important to understand how she uses the word pain. She emphasized to me: “I’m looking through a lens of pain not just being physical.” In speaking about the sensations of physical pain, Pookie said to me a few times: “Pain is purely the platform.” And she shared more with me about what this idea means to her:
I think it’s the root of why I now genuinely feel that my pain on some level is a gift and it’s a platform for me not to just continue to learn how to manage the pain but it’s the source of the depth of my gratitude for the journey … I was so pained, I realized, for so much of my life right into my thirties and forties personally, I was literally dying. And I’m not there anymore.
While Pookie credits the healing work she did before her allergic reaction with helping her to survive everything she has been through since, she also sees everything she has been through since as the platform through which she has continued to heal, grow, and evolve. As Pookie wrote to me:
My true focus is not on pain; it purely has provided the platform for becoming the BEST I can be Authentically as a Human Being………. as I was born to become……………regardless of my pain and or whether I can eat orally or speak on any given day. What brings me Joy practically in my life as well as pain relief are activities of diversion, enjoyment and further learning such as my valued Taoist Tai Chi Practice, Walking, Music, Reading, socially connecting and yes, simply being content when alone and the day demands serenity, quietness and simply “being” alone.
Finding Balance
As Pookie navigates life now, she still has a passion for supporting and caring for others, but what is different for her is that she no longer does this at the expense of herself. Pookie has found balance in her caring. Something that has been deeply influential in her learning to find balance is practicing Taoist Tai Chi. Pookie shared with me about discovering the practice:
I found Taoist Tai Chi in 2015. I was at an appointment with a specialist for my CRPS. I remember the day. We had done a trial of a spinal cord stimulator, and it didn’t work, and he basically said, that’s it for intervention. And I’d already stopped all drugs, and I remember walking out of that office, and I went on a long walk … And I saw this sign that said Taoist Tai Chi. I walked in. I was greeted, they were in the middle of their practice, and I was invited to sit down and just watch. And I wept because there was this group of people all in unity in silence, moving so gracefully, and I felt instant peace and quiet and some pain relief in my hands, and I thought, I want this, and I believe our founder led me there because I was contemplating signing MAID papers at that point in 2015. I was done.
Experiencing pain relief as she watched Taoist Tai Chi right after being told there were no more interventions that she could try was a powerful experience for Pookie, and the practice of Taoist Tai Chi has become an anchor point of living well for her. Pookie emphasized to me that the main goal of Taoist Tai Chi is to improve health and that all the teachings have been tailored to this. She stressed that Taoist Tai Chi focuses on feeling, noticing the sensations and inner experiences, and not the external form. Pookie dove deeply into the practice and even became an instructor. While she is no longer teaching, she told me: “Taoist Tai Chi, walking, stillness, simplicity have become not only important in my life, they are what make me content and happy.”
With respect to balance and Tai Chi, Pookie said to me: “Taoist Tai Chi is all about balance, not just physical. When people first start thinking, well I did too, it’s all about the physical. No. No. No. Internal balance.” Connecting with the practice of Taoist Tai Chi was a turning point for Pookie because it supported her in developing an embodied understanding of balance and in connecting to her inner experiences. She does not find balance through a process of making calculated decisions; balanced is a way she feels. Pookie wrote to me: “I am becoming more balanced, real and accepting of myself than I ever was.” Pookie shared a photo with me of her “feet on a narrow log walking, balanced” to capture how much a part of living well an embodied experience of balance is for her (see Figure 3).
Letting Herself Be Human. Part of the growth and healing Pookie has experienced through her Taoist Tai Chi practice and all the counselling that she did centres around giving herself permission to feel her feelings. When Pookie was young, she learned that it was not okay to be upset or disappointed. She told me: “We were never allowed to be real with our feelings, to just be human, we always had to cope.” As Pookie has become more balanced and more her authentic self, she is able to let crappy days be crappy days. She can compassionately meet herself with the understanding that part of being human is having bad days and feeling things that are hard to feel. Pookie experiences this permission giving around feeling difficult emotions as letting herself be human. She said to me: “I’m not in the closet with my fullness of emotion,” which is how she used to feel. She used to experience a stark difference between how she felt on the inside and how she presented on the outside. She no longer feels this way. She feels authentic in how she presents, and she named this shift as a key part of why she identifies as doing better and living well.
Empowered with Principles
Throughout her journey with pain, Pookie has focused on cultivating a sense of agency in the process. She told me: “I have been very proactive and knew that to self-empower myself was my way not just to survive but thrive.” Elaborating further on this idea, Pookie wrote:
Fortunately, early on in this journey and after years of many ineffective treatment trials, I learned, accepted AND owned the fact that my main hope to optimize my quality of life regardless of my debilitating symptoms was to actively pursue creative ways and educational opportunities “ongoing” to learn, embrace, develop and practically apply my own “toolbox set of self-pain management skills”! After all, I knew deep in my soul that “my reality for day-to-day life it was up to me” to create and maximize my potential “best life” possible.
Simplifying and clarifying are themes of living well for Pookie, and she has woven them through the way that she approaches this empowered relationship with her health and wellbeing. Pookie told me that she strives to focus on principles “so that [she’s] not too overwhelmed with too many things.” Her principled approach relates to her holistic way of relating to pain. She said to me:
Again, it was just another form of pain, it’s all just pain, whether it’s physical, emotional, whatever, and that’s why I talk I think principally now. I try to learn principally. It simplifies things and makes things more functional and practical.
The principles that guide how Pookie faces her challenges with pain also guide how she faces the other challenges in her life. Capturing this idea, Pookie wrote to me: “I love ‘principled’ focused learning as the applied tools that come from that perspective can be applied to ALL challenges in my life……. persistent pain being only one of them.”
Group Sessions at a Pain Clinic. In late 2020, Pookie was referred to a pain clinic that has been deeply instrumental in her living well. Through this clinic, Pookie began participating in a broad range of different group programs that she credits with the “advancement of [her] antifragility.” She uses the term antifragility to describe an experience of psychological strength. It goes beyond resilience, she told me, as she is able to remain unshaken by more of what she faces in life. These group sessions cover a broad range of topics, but for Pookie, everything she has been learning through the sessions aligns with her practice of Taoist Tai Chi and her principled and self-empowered approach. Having been an educator herself, Pookie went into these sessions knowing how empowering education can be, and she told me that the group sessions have been as positively impactful as her Taoist Tai Chi practice. She continues to regularly and consistently participate in these group sessions and has even repeated several of them. Pookie emphasized to me that attending these group sessions is an ongoing priority for her and a foundation of her living well.
Doing Her Best and Doing Something Different. As Pookie simplifies and clarifies her principles, she is also growing more confident in her capacity to face challenges in her life and more comfortable with what her best looks like on difficult days. She said to me: “I’ve learned doing my best doesn’t mean perfect. Do my best on any given day. Doing my best might be just lying in bed, blinking my eyes, and that has to be enough.” This compassionate perspective illustrates how she has learned to let herself be human. Pookie also shared a powerful experience she had with her mom that led her to develop a mantra that supports her in accepting where she is at. Some important background information is that Pookie’s mom was “an incredible gardener and composter/environmentalist way ahead of her time,” and that Pookie’s mother developed dementia later in her life. Pookie shared this story with me:
We were standing in her little kitchenette, and she was eating a banana, and she finished it, and she threw the peel into the garbage, and I saw that and my assumption, I thought, oh my gosh, she doesn’t realize she’s thrown that in the garbage rather than the compost and she’s not aware. I just gently said, hey mom, that’s the garbage you put that in … and she was a very powerful woman, she looked up at me and then bent down, took that banana peel out of the garbage, opened up both doors and she said, you’ll notice there is no compost bucket there, and she threw that peel back into the garbage. And she looked at me and she said, I did it when I could and now, I do something different.
Those words—I did it when I could, and now, I do something different—have become a powerful mantra for both Pookie and her sister. Through this perspective, Pookie has been able to access greater acceptance and compassion for the limitations that she faces.
Knitting as Therapy and as a Gift. Prior to 2002, knitting was a consistent part of Pookie’s life as a meditative practice. When she developed CRPS in her hands, however, she was not able to knit. As part of her rehabilitation, she was going to a rehabilitation centre where they had different bins with different textures for her to put her hands in to slowly desensitize them. Pookie shared with me about how she took an empowered approach to this rehabilitation:
I thought I don’t want to have to go to a rehab center and do their bins, I can do my own bins at home. I did that, and then, I started thinking, okay, how can I normalize that even more? … I thought of my knitting … so I found some yarn that was the most potentially comfortable for my hands … and I literally started with one or two stitches and knitting for a minute or 30 seconds and gradually worked up to the place where today I have turned that desensitization of my pain, rehab practice, into gifts of joy and gratitude for others.
This story of Pookie rehabilitating herself to knit is one that captures the agency she has brought to the rehabilitation process, and the reference to gifts of joy and gratitude also captures a beautiful example of how she did something when she could and now, she does something different. Pookie used to be actively involved with a neighbourhood food centre, but eventually, to care for her health, she had to step down from the board of this organization. Now, she told me: “I knit eternity scarves for the volunteers that do what I used to do, and I support them in my ways that are manageable.” She was actively involved when she had the capacity for that, and now, she does something different.
Helping and supporting others is an important part of living well for Pookie, and as discussed, learning to do so in a balanced way has been an important part of her own personal growth and healing. As she does with her eternity scarves, Pookie looks for ways that she can support others without sacrificing her own health and wellbeing, which often involves philanthropy. Participating in this research study was also something that Pookie did with the hope that it would support others. But again, not at the expense of herself, she has emphasized to me over and over again what a gift it has been to her to have this opportunity to reflect on her own journey and experiences. It is something she had been wanting to do for a long time, and when she saw the opportunity to participate in this study, she knew it was time. Pookie’s practice of gratitude supports her generosity. She believes deeply in the power of gratitude to turn what we have into enough, and she moves through the world believing that she has more than enough.
Weeping with Relief
Before 2020, Pookie received little-to-no relief from the different interventions she tried. She shared with me about this:
In 2013, I stopped all drugs. They weren’t working, and I had to have home support, I was so cognitively impaired, and I thought, this is ridiculous and so I stopped them all. But I quickly then started having things like shingles, and I thought, oh my body’s further failing me, oh my gosh, I just can’t cope with this. And then the spinal cord simulator didn’t work, and so that’s when I thought, I’m done, I’m finished.
Roughly four years ago, however, when Pookie was referred to the pain clinic where she has done the group sessions, she also began ketamine infusions—and they have helped. After 18 years, Pookie found an intervention that gave her some relief. Pookie wrote to me: “Imagine, after all these years of no effective interventions, finding a treatment that significantly provides some relief………….yes I wept.” Currently, Pookie has 8-hour ketamine infusions every 4 – 5 weeks, and she told me about how they support her:
The intervention of Ketamine reduced the pain to a level that I can more readily and capably, cognitively, tap into the existing toolbox and pursue growth of that as my main coping mechanism for my pain management. So, the intervention is only adjunctive, but it is crucial.
The pain in Pookie’s mouth limits her capacity to speak. After her ketamine interventions, however, she is able to speak more comfortably. At this point, she can speak for about 3 – 4 weeks after the intervention, and she is hoping to be able to lengthen it. When Pookie is unable to speak, she focuses on growing her capacity to listen, but it is still frustrating and isolating when she is unable to express herself.
The ketamine interventions cost thousands of dollars per day, and Pookie has to travel to access them. These interventions, as well as the travel costs, are another example of something Pookie has successfully advocated to get funding for. Without that funding, they would not be possible. With respect to this crucial and costly intervention, Pookie said to me: “And I do entertain the thought of the day, for whatever reason, it’s not available to me. We’ll cross that bridge when we get there, and we’ll see.” For now, Pookie is deeply grateful for the relief she experiences as a result of these regular infusions and for the financial support that makes them possible. They play an important role in improving her quality of life, and that is a primary focus of living well for Pookie.
Important Parts of Living Well. Other than the ketamine infusions, much of what encapsulates Pookie’s experience of living well might be broadly thought of as a healing spiritual practice, which again, she sees physical pain as a platform for. There are other pieces, however, that while not completely distinct from a healing spiritual practice, are things that Pookie does that support herself in living well. One example is the practice she describes as forest bathing, immersing herself in more natural environments. Pookie shared with me about how nurtured she feels by time in the forest and about how much it supports her in finding balance, inner peace, and calm (see Figure 4). It is something that she does every day. Music bathing is another important practice for Pookie. She spoke with me about how important music has been in her life and about how she is exploring accessing different vibrations through music.
Connecting with others is another important part of living well for Pookie. The quality of her life is very much related to the quality of her relationships with others. Her health challenges, particularly her difficulties speaking, can be a significant barrier to connecting with her loved ones, and this disconnection challenges her deeply. She has beautiful friendships in her life; Pookie wrote to me: “I am grateful that I also have a small nucleus of very dear, loyal and constructive friends that support me as well.” But not being able to speak disrupts her capacity to engage in social interactions and decreases her quality of life. She also finds that when she is able to speak there can sometimes be an urgency to the way she speaks because she feels like she needs to get everything out while she can. Pookie told me that not being able to speak at times is the most difficult part of her ongoing challenges with persistent pain because of the way that it limits her capacity to connect with others.
Decreasing Stress is a Priority. Pookie has found that her CPRS is triggered by stress, and because of this, a main priority for her is reducing her stress levels. When her stress levels are lower, she is doing better. Much of what I have written about in sharing Pookie’s story factors into lowering her stress levels: her financial stability, her practice of Taoist Tai Chi, her simplified approach to caring for her health, and the forest and music bathing noted briefly above. Perhaps, most notably, however, is her growing sense of antifragility; her sense of being psychologically robust. More and more, she is able to rest in a deep faith that she has the capacity to handle however her life unfolds. Through her Taoist Tai Chi practice and the group sessions at the pain clinic, she is becoming unshakable.
Having Purpose Beyond Pain
A deep embodied knowing that she is more than her pain is central to living well for Pookie, and a part of this experience is knowing that her life and her existence has a purpose beyond pain. She connects with their being meaning in existing. Pookie said to me: “It is what it is and I’m sitting here breathing and it’s enough.” As much as she has been able to connect with a sense of purpose beyond her pain, Pookie acknowledges that persistent pain can get to a point where it may not be possible to attain a reasonable quality of life. Before the relief that came with the ketamine infusions, Pookie was nearing this point. She told me: “If I don’t have a quality of life that is meaningful to me, that gives me contentment, then the MAID papers come out, and that still stands, and I’m very open about that.” In saying this, however, Pookie emphasized to me that she still has a zest for life, and that she would not make a decision about MAID without serious reflection and discussion about her options. She intended to stress the importance of a meaningful quality of life and having a purpose beyond her pain.
Trust the Process
An aspect of living well for Pookie that is rooted in her Taoist Tai Chi practice is trusting the process. This concept of trusting the process could also be thought about as having patience. Pookie spoke with me about how we tend to want to know right away how things will work out and what the steps forward are, but that figuring all of that out can take time, so we need to trust the process, or have patience. This idea of trusting the process is also central to the advice Pookie would give to others struggling with persistent pain. She said to me: “Even if you don’t understand it right now, trust the process, simplify, clarify.” Other parts of her own success that she would recommend to others are to stay curious and to have compassion for yourself. And as Pookie continues to face very difficult challenges on this journey, this work of trusting the process, staying curious, and meeting herself with compassion is at the heart of how she is living well and deeply knowing that she is more than her pain.
- Image submitted by Pookie as part of her response to the question, what does “doing better” or “living well with pain” mean to you? ↩︎
- Image submitted by Pookie as part of her response to the question, what does “doing better” or “living well with pain” mean to you? ↩︎
- Image submitted by Pookie as part of her response to the question, what does “doing better” or “living well with pain” mean to you? ↩︎
- Image submitted by Pookie as part of her response to the question, what does “doing better” or “living well with pain” mean to you? ↩︎