Keeping My World Bigger and Having Hope
Crystal is a woman from British Columbia, Canada who has lived with persistent pain since childhood. When she was 4 years old, she began having chronic migraines, which were made worse in her twenties after she had a concussion and dislocated her jaw. In her thirties, Crystal began having arterial dissections, which are tears along the inside lining of an artery. These arterial dissections led to strokes and then subsequently to post-stroke pain. After her third arterial dissection, Crystal was diagnosed with Ehlers-Danlos syndrome (EDS), which is a genetic condition that affects connective tissue. There are 13 different types of EDS, and arterial dissections are known to occur in some of the rarer types of EDS. Thirteen years ago, Crystal also developed Addison’s Disease, and in the past year, she was diagnosed with primary immunodeficiency syndrome (PIDS). Even though she continues to encounter new challenges with pain, Crystal is living a rich and meaningful life. She has found many adaptive ways to do the things that are important to her. Crystal does a lot to support others living with pain, and she has seen firsthand how people’s lives can become smaller and smaller in the face of persistent pain. For Crystal, the idea of one’s world becoming smaller reflects an absence of hope because when there is hope, there is always something to move toward. Keeping her world bigger and having hope are important parts of living well for Crystal, and she does that by having faith and by truly understanding what matters to her and finding ways to bring more of those things into her life.
Creating is a Necessity
There was a time in Crystal’s life when her world felt smaller, and she was not able to engage as meaningfully in her life. She shared a bit about that experience with me:
There was a time where it was all so very frustrating. Not knowing how to work with the pain, I was dealing with the doctors. I remember times sitting on the floor crying, and coming home from a doctor’s appointment, and being in tears because I didn’t feel I had any help. All that was being offered was like opioid type medications and medications that just made my brain foggy and then I couldn’t do anything that was important to me. It’s like, okay, so I’m not in that level of pain but I’m not able to function either.
With respect to functioning, something that is particularly important for Crystal is to be able to create in some way. She told me about her relationship with creating:
I’ve been drawing since I was young, and I look around at my family, we’re all drawing or writing. We’re very creative people, and I think that’s just almost like a necessary part of life for us, being creators. It’s as necessary as getting up and eating. You don’t do it, it’s like some part of you is dying.
Crystal shared with me about how she has kept creating a part of her life:
I found adaptive ways to still have the same meaning in my life, because I worked as a carpenter before, so having something physical that you produced and put out there in the world was important. Now, I spend more time with my art, and I’m able to share that with people.
These days, Crystal describes herself as “always drawing,” and being able to create in this way is an important part of living well for her. Crystal said to me:
To me, keeping my world bigger is a big part of living well, having time with your family and enjoying all the little moments and the quiet moments that are meaningful to you, which to me that’s my art and having those things accessible to me.
An Image of Living Well
As creating is such an important part of living a meaningful life for Crystal, she chose to create an art piece to capture her experience of living well (see Figure 1). When Crystal and I spoke, she shared more with me about the themes and stories that are captured by this piece.
Her Husband and Her Mother. In addition to self-portraits, two people that Crystal chose to capture in this piece of art were her husband and her mother. She shared with me about how they are a part of living well:
My husband and my mother are also here in this painting because those are two people who’ve been huge supports and also been on the journey with me. On the far left, you see his arms, like he’s here like this [gestures crossing arms and resting head on forearms] and that’s actually a picture I took from my hospital bed one time, and he was sitting in a chair beside me and had fallen asleep with his arms on the rail. He’s in this painting because he’s been on this journey with me and having him there during my more difficult days is also part of living well. I recall times where, I’m lying in a hospital bed and he holds my hand and I said, It’s okay, we’re happy, we have a good life.
Something that came through in my conversation with Crystal was the way that having supportive people, like her husband and her mother, in her life is a foundation for living well. Pain challenges and all kinds of other challenges could come her way, but with the love and support of others, she has the thing she needs most. And spending time with loved ones is also one of the meaningful things that keeps Crystal’s life feeling bigger.
A Supportive Community. In addition to her husband and her mother, Crystal emphasized the importance of a supportive community. She told me: “Finding solid people is very important and there’s people that you just don’t have space for, they add to not living well.” Crystal shared more with me about people who make it harder to live well:
Some people, they have expectations for you that there’s no way you can meet. And then they’re disappointed or frustrated and say hurtful things, and you just have to go, okay this person, I’ll interact with them where it’s necessary.
When I asked Crystal to tell me more about the kind of people who support living well, she said to me:
They adapt around you, like you know that they could go, I don’t know, hike and do [particularly intense hikes] on their own, but they’re not going to expect you to do that. They’ll go out for tea with you or bring it to your house. And then, if you’re having a bad day and you say, okay can we change our plan, they’re not offended and upset and taking it personally, they recognize if you could you’d be there. They just send a text message and be like, no it’s totally fine, take care of yourself. And so, you feel comfortable making plans with them because, you know if you can’t get out of bed today, they’re going to understand.
Summarized very simply, the kind of solid supportive people Crystal spoke about do not make you feel bad for feeling bad. Crystal’s support community also includes her cat who featured in her art piece as well.
Her Faith and Belief in Healing. Another important factor in living well for Crystal is her faith and her connection with her congregation. Her congregation is a part of her broader supportive community, and her faith supports her capacity to persevere through all the challenges she has faced. For Crystal, her faith is also her source of hope. It is through her faith that she finds something to continue to move towards and she trusts that enduring the challenges she faces is a part of this process. Crystal said to me: “I believe we were created to live a very beautiful life on this planet.” Rooted in this belief is a faith in the human capacity to heal. Crystal shared with me:
We’re designed to heal. Our brains are designed to find new pathways and find ways around the challenges … We’re designed to heal, and I mean if we weren’t, nobody could do surgery. The doctors work with those things that they learn about our nature. The way we’re put together, and if I learn how to work with that, then I’ll get the most out of me.
Crystal sees human beings as being designed to move in the direction of healing, and her faith in this healing nature supports her capacity to move forward in the face of adversity. With respect to living well, Crystal told me: “We have a beautiful promise of living life and living life well, and we just have to get there.” Her faith in this idea underlies her capacity to continue to have hope.
Mobility Aids. Different mobility aids are featured in Crystal’s art depicting what it means to live well with pain, and she told me a bit about why:
I see me in a wheelchair, with a walker. I have different mobility aids that keep life accessible to me, because living well with pain is, it’s doing the things that are meaningful to you and that you want to do, not being prevented by what’s going on with your health, because I see pain put people in bed and keep them there and then you get depressed and your world becomes very small.
Whether it be people or tools, all kinds of different supports are woven through Crystal’s life enabling her to live a life that feels meaningful to her, even with the limitations that she faces.
Sunshine and Life. In three different places on Crytal’s piece, there are images of a bright shining sun, and if you look closely, you can see a dark silhouette, arms spread wide, beside the light. These parts of the piece are intended to capture different parts of Crystal’s process in creating another piece of art (see Figure 2). It took Crystal a while to paint this piece, and the images of her painting in Figure 1 capture her creating the art, but also acknowledge that things take time. Crystal said to me: “It took a while to paint, and the process of living with pain, it also takes a while to figure out how to do it.”
Crystal’s painting holds a lot of meaning for her, and it has been hanging in her bedroom for the past couple of years. She shared with me about this piece:
That painting is of my little sister. I took a photograph of her at the beach … and she’s standing on an old tree stump with her arms out, and we were having some sort of discussion about Peter Pan. And then later on, I did the painting based on the photograph. I don’t know that photograph was just kind of all sunshine and life.
For Crystal, this painting represents the choice to stay connected with and to focus on what she calls the “bright spots” in life. Crystal explained to me: “You can rerun whichever memories you want. And you’re better off to rerun the happy ones, the making cookies with kids, and being at the beach with your sister. Replay those.” An important part of living well for Crystal is fostering this focus on the bright spots in her life and working hard to keep herself in a positive place.
Be Sure to Leave the Pity Party. As hard as Crystal works to stay in a positive place, she also acknowledges that sometimes she needs to feel the difficult feelings that are coming up about all the challenges she is facing. She told me about her perspective on this:
I think if you’re going to have to live with pain, you could just go down a dark rabbit hole and pity yourself. I’ll often tell people, it’s okay to go to a pity party but like with any party, you just go there for a little bit, you don’t live there. So sometimes you need to cry about it or write down those dark thoughts, but don’t live there. It’s a party, you just drop in and leave.
I reflected to Crystal that sometimes people do get stuck in these darker places, and I asked her about what helps her to make sure she leaves the pity party. She spoke to me about the importance of having “routine steps to signal to yourself that you’re okay and you’re going to get past this.” For Crystal, having a cup of tea is something that she finds comforting and that acts as this kind of signal. If her husband is around, a hug from him and saying a prayer together is another thing that can help. She also told me about how drawing supports her: “In those more difficult times, I have things set that I just draw some flowers, doesn’t require coming up with a composition or anything, just draw some flowers, and it keeps me in a more positive place.” She explained a bit more to me about what these routines signal to her: “This is your door out, this is the direction you need to be going and kind of like someone signaling to you when you’re at a party, okay, it’s time to go.” Put simply, it is reconnecting with hope.
Meaningful Contributions. Another important part of living well for Crystal is feeling like she is making meaningful contributions to the lives of others. Her art is one of the ways that she does this. Crystal shared an example with me:
I’m always drawing, and sometimes I draw, coloring pages for little kids. And then I’ll get a mom or an aunt sending me a picture of the kids coloring the page, and they thank you and that, you know, that’ll make my day.
Supporting others facing health challenges is another way that Crystal contributes in meaningful ways, even on the days that she has very little capacity herself. She has found tremendous value in connecting with others facing similar challenges, and she makes a point of trying to be that kind of support for others. She told me about what that might look like:
Sometimes that’s you know lying in bed, sending text messages to someone who is also struggling and trying to help them keep a positive attitude, that makes a difference because it keeps that positive focus in your life, you’re providing them with a person that can understand, and I know how important that is … I’m hoping that that contribution helps them not to go through some of the struggles that I went through.
Because pain impacted her life from such a young age, Crystal is particularly passionate about supporting younger people who are facing health challenges.
When Crystal was younger, she had certain stories and expectations about what a young person’s life should look like. She shared with me:
When you’re young, you want to go to parties and find exciting things and go to theme parks and roller coasters and travel to Mexico and my health started limiting me from those things. I felt very disappointed and cut off.
Eventually, however, Crystal found different ways of connecting with others. She explained to me: “The one-on-one, having tea, spending the afternoon sitting in the garden in quieter ways so that they didn’t drain me.” And Crystal felt like these different ways of connecting with others helped her to really understand the people she was interacting with and ultimately build deeper relationships. They became preferred and meaningful ways of socializing, and in her efforts to support younger people navigating different health challenges, Crystal hopes to help them find ways of connecting with others that work well for them. She shared an example with me:
I know one young girl said to me something like, I never had a chance to be young, I’ve always been old. And I think what she’s saying is, I can’t go out and party with my friends. My health prevents me from doing that. So, a few years later and I see her having board game nights on the regular. But okay so she’s not going out and dancing with her friends and things like that, her body’s not going to let her, but she can connect and have board game nights and have lots of fun. And so now in talking to her, I see she deals with less depression, she’s a little happier and has some real solid friends and it’s nice to see.
The story of how Crystal supported this young girl is an illustration of the meaningful contributions that she strives to make and how she keeps her own life bigger.
It’s Just Part of Who You Are. Prominent in Crystal’s art piece depicting her experience of living well are four silhouettes of people dancing. Joint hypermobility is observed across all types of EDS, and Crystal told me a bit about her experiences with it:
Hypermobility is a factor in my pain, and what’s caused my arthritis. When I was young, I was one of those hypermobile kids that would show people I can bend over backward and touch the floor and do all those tricks and they left me with problems today because we didn’t know. And in our family honestly, we were all super bendy so there was nothing like, oh you shouldn’t do that, that’s not normal. It was normal for us. But those things may be in the background, that’s one of the causes of pain but also, it’s just part of who you are. Yeah, okay, that’s what your genetic makeup is, and you just have to work around it.
Woven through what Crystal was sharing with me was this idea that acceptance of one’s life or one’s circumstances is about the wholeness of it all, that all the different parts are a part of the same whole. She elaborated: “And so yeah accepting what you’re dealing with, why you’re dealing with it. It’s going to be there in all the aspects of your life, but you still have all the aspects of your life.” In Crystal’s case, the joint hypermobility that comes with EDS is a factor in her pain, but it is also a part of things she has been able to through her life, like dance in a way that many people’s bodies will not allow them to.
Nothing to Prove Anymore
When Crystal found herself no longer able to work, that change was initially a struggle. She elaborated on what this time was like for her:
Because my illnesses are invisible, and when I had to stop working and then people would say things to my husband like, oh but couldn’t she do something like this or that, and I knew that I couldn’t, but I felt like I had to argue with people, and it felt like maybe I wasn’t as valuable because I wasn’t working. I had to deal with all those sorts of things, and I felt like I had to, I don’t know, prove something about my worth to the world in general.
For Crystal, coming to deeply believe that she does not need to prove anything about her worth has been an important part of healing and living well. Crystal and her husband are fortunate to be in a financial position where they do not need Crystal to earn an income. Being in this situation, Crystal realized that the only reason she was considering finding a way to return to work was to prove something. Instead, she learned how to give herself permission to be where she is at and believe in her inherent worthiness. Crystal said to me: “I’m a value-added person whether or not I hold down a job that gives me a paycheque.”
Through this process of allowing herself to be where she is at, Crystal was also able to move away from experiencing a sense of needing to prove how much pain she was in. Part of what helped to facilitate this shift for Crystal was a better understanding of pain. She explained to me:
As I learned more about pain, that feeling of competition, of proving that you’re in pain, I no longer felt like I had to prove something to people, that I could just be where I am and then from this place of how I’m doing today, decide what I’m going to do with the energy and abilities that I have for today.
Growing Confidence
Something else that has supported Crystal in living well is growing confidence in her capacity to navigate the different types of health challenges she has been facing. She told me about witnessing this growing confidence in herself:
A little over a year ago, I had my last stroke and so I was back in a wheelchair and all those sorts of things. and just went, it’s okay, I’ve done this work before, I can do it again. That’s where the central pain started. So, I had these other things that I dealt with before, learning to cope with pain and then another setback and being able to tell myself, you know what? I’ve done this work, I’ve been successful so I can succeed again.
In no way is Crystal intending to make the process sound easy, rather she holds a deep confidence in her capacity to persist, heal, and find a way forward. She shared with me: “It’s a huge challenge. Like training for a marathon. You know that it’s a long process and you know that there’s a lot of work that has to go into it, but you also know that the work works.”
Finding Hope and Knowing Yourself
From her faith to her bright spots, the importance of having hope is woven through living well for Crystal. Her faith and her belief that we are designed to heal are foundational sources of her hope. Looking back and seeing progress is also a source of hope for Crystal. She wrote to me:
I think that I have become kinder, more compassionate, and understanding because of the things I have endured. Not only do we reach physical milestones, knowing that I can achieve something physical like walking further, but also emotional growth. Growing through our trials towards our hope can help us become better people. Brighter. Happier. Because of Hope, any physical difficulties I have faced have always been something temporary in my mind. It’s just something I have to work through.
Crystal experiences hope as something that is alive and something that can grow, and when she witnesses this kind of emotional growth in herself, her hope gets bigger.
When I asked her about what advice she would give to people struggling with pain, one of the things she said to me was, “Find a reason for hope.” She told me more about why she believes hope is so important:
I’ve sat in hospitals a lot, in doctor’s offices, and I can see there’s people that have hope. They can see a way through this and others who are just stuck where they are. They’re angry with the medical system, and they’re angry with what happened to them, and they’re stuck in a blame cycle as opposed to having hope, seeing that they can move forward in some way, and even if you’re not there yet, you were just hit by a car, you’re not there yet, you’re right at the start of this journey. If you can say there’s hope, well, there’s a destination and a path.
Crystal further emphasized to me that hope not only gives us a path, but it is our source of being able to endure the challenges we face in life.
To note a final piece that has been important for Crystal and that she would recommend to others, Crystal emphasizes the value of really trying to understand yourself and what is right for you. She shared with me about what the process of coming to better understand yourself might look like:
I think some of that is taking the time to think about what you’re doing afterwards, say, you know, was that worth the amount of energy I had to put into it? Was there something there that I’m going to walk away from and go, that’s one of those bright spots, that’s a memory I’m going to hang on to, or is it like junk mail.
As being able to do the things that are meaningful to her is such an important part of living well, Crystal has been dedicated to this type of self-reflection. Through it, she has been able to make a life full of complex health challenges a life that is also full of beauty and bright spots—and she has hope that it will only become brighter and more beautiful.