Pain Makes You Appreciate Life’s Pleasures
Jean is a 68-year-old woman from British Columbia, Canada who has lived with pain for most of her life. She was 8 years old when she first started having migraines, and she lived with them until something much more debilitating took their place. Eleven years ago, Jean fell and hit her face, which resulted in nerve damage and a diagnosis of Trigeminal Neuralgia (TN). Jean told me: “Trigeminal Neuralgia is indescribable compared to a migraine. I prayed for my migraines to come back, actually hoping that this other stuff would leave.” She spent a number of years in a very dark place struggling with the pain. She shared with me: “I have to admit that I wished that my head would just explode, and it would be over with.” Rooted in her remarkable capacity to persevere, however, Jean has found herself in a better place. As will come through in Jean’s story, the support of many other people paired with Jean’s persistence and her disciplined focus on a positive perspective have led her to a place where she has been able to find more enjoyment and pleasure in her life.
Finding Medications that Help
The years after Jean first fell were very difficult ones. She told me: “It was the worst pain I’ve ever had in my whole life, and it was relentless.” She shared a bit with me about what life was like at that time:
After my fall, I felt like a prisoner in our home with the drapes shut 24/7. I could not tolerate the sun, bright lights, or noise. I would watch TV with sunglasses on. The right side of my head was so sensitive I couldn’t even comb my hair some days. Washing and drying was another adventure I’d rather not even think about.
During the first year and a half, Jean kept trying different medications to see if she could find some relief. Not only did most of the medications not help, but Jean also found herself experiencing unpleasant side effects from them. She told me more about this time:
My doctor kept giving me medication in the beginning, after my fall, for migraine. And I kept telling him it wasn’t migraine. I would get the prescription, try it for three days—absolutely no relief, zero. Then go back and say give me a different medication.
Jean felt like her doctor would get a little annoyed by this at first, but after a while, she felt like he understood. She told him: “I can’t, I just can’t wait two weeks.” Through this period, Jean was willing to try everything except opioids. She had seen firsthand the impact of opioid addiction, and she was not willing to take that risk.
Jean had to wait a year and a half to see a well-regarded neurologist, but by the time she did, her persistence in trying different medications had paid off because the neurologist did not think anything needed to change with respect to the medications she was taking at that point. Medication continues to play a role in Jean’s pain management, but ultimately, she hopes not to need it. She shared with me:
I’m hoping to get rid of them too eventually. That’s my goal, you know, to get rid of them, but I’ve accepted the fact, if I have to stay on them the rest of my life to stay relatively pain free, because I still have breakthrough days [where the pain is suddenly more intense], then that’s what we’ll have to do.
Finding People Who Help
The persistence that supported Jean in finding the medications that work best for her is woven through all aspects of her journey with TN, especially when it comes to finding people to help her. She said to me: “I told my family doctor early on, there has to be someone in this big old world that can help me get some relief, and I will find them.” As Jean shared her story with me, I was struck by how many people have been around her helping her and supporting her in getting to this place where she is doing better.
Her Husband. The support of Jean’s husband is woven through her whole story. She told me: “My husband was so supportive through it all … and he was always there if I needed help.” He went to medical appointments with her, which was invaluable. Jean shared with me: “Some days when I was going to new doctors, the pain was terrible. It’s hard to concentrate on what they’re saying, so I always take my husband or somebody with me to tell me later what they said.” Jean is back driving now, but for years she was not able to drive, and her husband took her to all the places she needed to go.
Jean is disciplined in her effort to focus on what is going well. Part of this discipline involves attending to the people she spends time around. Jean has found that certain people make it easier for her to stay positive and others make it harder, and she chooses to spend her time with people who make it easier. She put it simply: “I want to be around happy people.” I bring this piece up when writing about Jean’s husband because she said to me: “My husband is my bouncer.” Her husband is aware of the people who challenge her capacity to stay positive, and “he heads them off at the pass” and engages them in conversation away from Jean. He truly attends to all sorts of things that support Jean in doing better.
Trigeminal Neuralgia Support Group. Discovering a TN support group was incredibly helpful for Jean. She shared with me about the first time she spoke with the woman who runs the support group on the phone:
We must have talked for two hours. She was the first person, makes me emotional thinking about it, that I had, from the beginning, it was like two years into it, this pain, and she was the first person that I had talked to that actually had trigeminal neuralgia. Someone that could understand what you’re going through, and I didn’t have to go through all the descriptions. I had to come up with new descriptive terms every time I went to the doctor.
Jean felt so much relief during this first phone call that she did not want to hang up. Joining the group helped to validate everything she was experiencing and made her feel so much less alone. It also alleviated doubts she had about possibly going crazy or making up her experience. After connecting with others with TN, Jean was able to say to herself: “Okay, I’m not losing my mind.”
The support group met in person every couple of months. There were about 30 people in the group ranging from 20 to 85 years old, and Jean told me about her early experiences with the group:
Everybody went around for five minutes and just said what medications they’re on and how long they’ve been dealing with it and stuff. And it was just wonderful. It was so much relief for me. And my husband too, then he could understand that I wasn’t the only one.
The support group helped Jean’s husband understand her as well because it gave him so much more insight into the experience of living with TN. With respect to this, Jean said to me: “He could finally get it.”
Another significant piece that Jean took from the support group was a phrase that she now often repeats to herself: “It could be worse.” As dark as things had been for Jean, listening to the stories and experiences of other people in the TN support group led her to deeply believe that it could be worse. As she listened to others, she found herself feeling gratitude and thinking thoughts like, “Oh my goodness, I’m so glad I don’t have that.” Jean also connects with gratitude as she reflects on having lost some relatives to cancer in the past couple of years. At least with pain, she said, “I am grateful that there is medication and other alternatives to help lessen it, so I am able to do everyday tasks.”
Supportive Friends and Family. As Jean and I spoke, she told me about some friends and family members who have been particularly wonderful supports for her. When her pain was at its worst and she was going through the process of trying different medications, Jean would often call a lifelong friend who had been a neighbour of hers growing up. She shared with me about speaking with this friend:
I just took my pills. I need you to tell me a good story, like she had the best jokes and just the best laugh. She would laugh, and then about an hour into the conversation go, ‘How do you feel now?’ And I said, you know what, I actually feel better.
This friend of Jean’s has passed away now, but Jean considers her to have been a lifesaver during her dark times. About this friend, Jean told me: “She got me through some pretty bad days.”
Another person who came across as a particularly wonderful support for Jean was her middle grandson. She told me about him: “He’s always had this enthusiastic way of telling you a story—didn’t matter if it was somebody winning a million dollars or a kid losing a tooth beside him at school.” Sometimes Jean would call him just to ask him to tell her stories, and he would—one after another. Jean’s aunt was another family member that came up in our conversation as an especially supportive person. Jean does not live close to her aunt, so she usually only sees her once a year when her aunt comes to visit. Jean shared with me about those experiences:
I only see her about once a year, and she was an amazing help for me because she would come and stay with us and then she’d look at me and she’d go, ‘Yeah, you couldn’t do that last year when I was here.’ You know, looking at you like, good for you.
Jean found this feedback from her aunt so helpful because there were many little things that she was accomplishing that she had not realized until her aunt pointed them out. It led her to stop and think more about the progress she was making in different areas of her life.
A Doctor Who Saved Her Life. The neurologist that Jean saw a year and a half into her journey with TN referred her to a pain clinic where Jean began working with a doctor who she credits with saving her life. Jean has been working with this physician for five or six years now. (To maintain Jean’s anonymity, I will use the pseudonym Dr. Grace Hartwell for this physician.) When speaking about Dr. Hartwell, Jean said to me: “She was just, she’s amazing. She literally saved my life because I just didn’t know how I was gonna live with that degree of pain and not having any, nothing that would fight it down, you know?” In Dr. Hartwell, Jean had met someone who shared her capacity to persist in trying to make things better and someone who shared her faith that there would be something that helps. Jean shared with me:
She understood the pain, and if she tried one procedure and it didn’t work, she didn’t keep trying it. She would try something else. And if we had a little success, then we would go, okay, let’s try it again next time.
Jean describes Dr. Hartwell as being incredibly open and “always excited about trying something new.”
Another wonderful part of working with Dr. Hartwell for Jean is feeling like they were working together as a team to try and make things better. Jean told me: “She worked with me and talked to me … you could tell she was intensely listening. She was really paying attention to what I was saying, and I always found that was such a nice feeling.” Jean spoke about Dr. Hartwell’s “enthusiasm and her ‘you can do this’ attitude” and about how she “always felt better when [she] left seeing her just even from the appointment and her talking and stuff.” Jean really felt like she could trust Dr. Hartwell.
Through her work with Dr. Hartwell, Jean has also been able to significantly reduce her medication use. She told me: “I’m literally on half of the medication I used to take and that makes me feel better too because there’s often a lot of side effects with medications. I didn’t realize some of the side effects until after.” Dr. Hartwell has been working hard alongside Jean and together they tried all different kinds of interventions that have led Jean to be able to do all kinds of things she was not able to do before. Jean wrote to me:
At the moment, between medication and Botox injections every 3 months in my head and neck, I am now able to go outside WITHOUT SUNGLASSES!!!!!!!!!!!!!! I also can have the drapes open and just live life. There were times I felt I would never have my life back. I am not 100% but I am at least 75% to 85 % better.
Her Caring Cat. Another wonderfully supportive creature in Jean’s life is her cat. She said to me: “My cat was my lifesaver too.” When Jean’s pain was at her worst, her cat started doing something that he had never done before—putting his paws on the right side of her head where she was experiencing such intense pain. She shared with me about it:
I lay on my side and the cat would lay up here [gesturing to side of head], and he put a paw here, and then he would fall asleep and slowly his paws would go down. Then he’d wake up and he’d put them back. That’s where my pain was. It was the oddest thing. Day after day, he would crawl up here, and I could fall asleep with him being there.
It was like her cat intuitively knew where she was in pain, and he was reaching out with his warm paws to soothe and comfort Jean.
Accessing Supports
In addition to Dr. Hartwell, Jean has other healthcare providers that she feels supported by. Jean lives in a suburban area where she is close enough to more urban areas to drive to resources located there, like Dr. Hartwell’s pain clinic and the TN support group. Jean’s husband is now retired, and friends have suggested that they move to more rural locations. Jean told me that she said in response: “Not in a million years, like never, I’ve got doctors here.” Living where they currently live has been an important part of Jean being able to access some of the resources that have been most helpful to her. Jean’s access to care has also been supported by financial stability, as her husband was still working, and she qualified for long-term disability.
Pushing Away Memories of the Past
An important part of living well for Jean is being very disciplined about what she thinks about and focuses on. She told me that early on: “All my doctors kept saying, ‘Oh, you need to forget what you used to be able to do.’ And I said, well, how do you do that?” It took her a long time to accept her limitations, but Jean has found a way to push away the memories of what she used to be able to do. She told me that when she was working, she had two speeds: fast and faster. Then, after the fall, Jean said it was like going from 100 to zero. Jean experiences a powerful pull to focus on how things used to be, but she has realized that it does not help her to do that—so she does not.
Another thing Jean works very hard not to focus on is how bad things were in her early years living with TN. But breakthrough pain, which is a sudden and brief flare-up of pain, is a strong reminder of the past. Jean shared with me: “I try to push back memories of past struggles but on my breakthrough days, the pain, it reminds me with no choice. So, I shut things down for two or three days and then I get back on track.” During these times when the breakthrough pain makes it hard not to focus on the past, Jean leans heavily into things that help to distract her. Jean told me: “You have to think about something else for a while, and then sometimes that helps make it calm down a bit too, and sometimes it doesn’t.” Playing music that also helps her to relax has been a supportive distraction for Jean over the years.
Jean’s effort to focus on what is going well is a part of doing better. She said to me: “Attitude makes such a difference when you’re trying to get past pain.” She elaborated further: “You have to keep positive. It’s hard. It’s hard to do.” As discussed earlier, Jean has found that the people she is around can make it easier or harder to keep positive. She is adamant about distancing herself from people that she experiences as miserable and cranky. She told me: “I said to my husband, I can’t be around that, I cannot be around that kind of person right now.” In Jean’s experience, “Being around people who are negative all the time, it just brings you down. It really does.” Distancing herself from people that make it harder to stay positive and having her husband as her bouncer have really helped. She said to me: “Being around positive people has made a big difference.”
Appreciating Life’s Pleasures
As the intensity of Jean’s pain has decreased over the years, she has found herself able to do many things that she was not able to do for years. It took her a long time, but she has been able to get back to driving. She and her husband have always enjoyed boating and fishing, and last summer Jean and her husband were able to go boating with friends for the first time in years. In response to a friend on the boat asking how she was doing, Jean told me she said: “Three years ago, I wouldn’t have been able to even come on this boat. I wouldn’t have been able to handle any of the sensory things like the brightness of the reflection off the water, or any of that.” Reflecting on having gone on this fishing trip, Jean shared with me: “Going fishing, that was huge for me. Huge. Because we couldn’t go for years.”
Being less sensitive to sensory input like light has made so much more possible. Jean told me:
It makes me happy when I can open the blinds on a sunny day, something that I couldn’t do 5 years ago. Or go to an event without worrying if it is going to be too bright or how many stairs do I have to climb or even too noisy.
The weather condition that remains too bright for Jean is snow. She said to me: “The only thing that is my hurdle right now is snow. Snow will set it off.” Jean acknowledged this hurdle, and then commented on how she was fortunate that it does not snow much where she lives and joked about not liking the cold anyway and being more than happy to go to Mexico in the winter. These comments were an example of how Jean persists in focusing on what is going well and on how things could be worse.
Arising from this focus on what is going well is a newfound appreciation for life’s pleasures. When Jean was living at her fast and faster speeds, she did not appreciate being able to do all the things she was doing in the same way that she does now. Having found her way to what she describes as a medium speed, Jean finds joy in things and appreciates them in ways she could not have before. She shared with me:
I am so happy I am at the point where I can wash/comb my hair anytime I want without thinking about it. Or jump in the car to go do an errand. Just doing the little things that I took for granted before.
She wrote to me about an experience weeding her garden:
I remember one day I told my husband that I am going to weed the flower beds and he said I couldn’t do it. I said to him, “Watch me.” A person just has to get creative, so instead of bending over to pick weeds, I got an old piece of carpet, got on my knees and slowly worked my way around the flower bed. It took me 2 hours to do what I used to be able to do in 20 minutes, but I DID IT !!!!!!!!!!!!!
The pride and enthusiasm that Jean exudes when she shares about this experience is not something she would have felt doing the weeding in 20 minutes during her fast and faster phase of life. Jean deeply resonates with the idea that pain makes you appreciate life’s pleasures, and this appreciation is a part of doing better and living well for her.
You Gotta Keep Trying
When I asked Jean about what advice she might give to others struggling with persistent pain, she commented that what worked for her may not work for someone else, but she also emphasized the importance of being persistent. She said: “You just have to make up your mind and keep pushing to find someone or something that helps.” Don’t stop looking. Keep asking questions. Keep trying things. Jean sees this persistence as an essential part of the progress she has made. She told me: “Had I not kept asking questions and looking for help, I would still be trapped in our house. … If I had sat back, I’d still be sitting in that dark room watching TV with my sunglasses on.” Woven through my communication with Jean were comments like, “I don’t give up easy,” and “You gotta keep trying.” Jean’s capacity to persevere in doing research, seeking out new practitioners, and trying anything that might help has been vital to the progress she has made, and it continues to support her today. As she told me: “I am determined to get my life back, and even though I am not there yet, I am getting there. I refuse to let pain win.”