I’m Aware That I’m Rare: Dawn Clarke (455)

phaware global association®
11 min readFeb 12, 2024

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the phaware® interview

Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one’s well-being, including physical, mental, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges.

My name is Dawn Clarke. I am currently residing on the Mississaugas of the Credit First Nation, Hagersville, Southern Ontario. This is my mother’s homestead, where she’s come from. She’s indigenous. My father is from Cape Breton, Nova Scotia. He is non-indigenous or what we used to call him, Caucasian. I grew up in the military life, my father was in the military. My mom was quite young when she had me and got with my dad and started moving around to different places. Life at the beginning was a little complicated for me. Both parents were strict and that’s how my upbringing was with all the things that go along with that. So I became a really quiet person. I should start off too by saying that I did a have congenital heart defects and heart surgery at four months of age. Incidentally, my parents were not at the surgery, so they were about two hours away when I did my surgery. They were back home.

They didn’t have a vehicle, so I had no parent there at hospital during my open heart surgery. I did find out about that years later. I believe that there’s a lot of childhood traumas that help lead up to the health of where people are now into adulthood. That was something that I had to deal with. So I did get surgery at infancy. I had intended on joining the military. I had actually passed all my testing. I did really well. The only thing I was waiting for was a phone call to say, “Okay, it’s basic training time, let’s go.” For some reason, that call never came.

I ended up going to school from nursing. When my children were one and a half and three and a half, I ended up going into nursing school. It was quite difficult to say the least as a single mom, single parent, and going through nursing school. Somehow we made it through though. With the help of family and relatives, we did get through that. But after a number of years, I had been really kind of wondering about doing mental health work. I did dabble in some training here and there with the mental health field, but it was kind of something that my brain was always wanting to lean towards.

A few years ago, I started developing shortness of breath. I was down in weight compared to where I had been for a lot of my adult life, probably about 180 pounds, which is still overweight for a short person. I started getting symptoms when I was working as a nurse. Weight started coming on again. I thought, “Oh, must not be as active as I was before.” I was getting a high blood pressure readings, and that had never been an issue before. So even with my cardiac history, I had still been fairly healthy.

I had been trained to do palliative care nursing, so I was seeing a lot of palliative care patients. I got to the point where my troubles with my breathing became more of an issue, especially to the clients than they were… me coming in, trying to get up the stairs to see them, sitting down and taking a couple of minutes to catch my breath, at a point where I was starting to bring my oxygen in with me to do the stairs or to get from point A to point B to their rooms or anywhere to see them.

By this point, I had gotten quite bad. I finally decided I just can’t do this anymore. I’m going into houses that are difficult to maneuver around, also into smoky houses that I always despise smoke, cigarette smoke, and having to take care of myself in front of patients before I could care for them. It was just getting to be way too much. The physical maneuvering of patients became very difficult and I just couldn’t keep up anymore.

On top of these things. I also have scoliosis, and it’s something that I was diagnosed with when I was 12. So between my back and the pain, between the weight gain and the shortness of breath, it just became very difficult to move people, to turn people to do any things that they needed to get down on the floor to do leg and feet dressings, if they happen to be sitting on a couch, for example.

Yeah, it just became too much. I tried to push further, but I just couldn’t. Mentally, I was starting to deteriorate as well. I knew there was something wrong by this point, and I hadn’t quite got the diagnosis yet of PH, but it did soon come after pushing and trying to get in to see a doctor.

I think I was diagnosed in June of 2019. I went off work July of 2019. Probably for the next year I was wearing oxygen pretty much 24/7. Sitting in a chair, so where I am now, just maneuvering myself around became quite difficult and caused me a lot of shortness of breath. It was to the point where, “All right, I don’t think I can do this anymore.” So I had to give that up, give that role up. I did not give up my nursing license, I still have it, but I am now on… What’s the term? Non-practicing. So I’m a non-practicing registered nurse.

I decided to hold onto that because it was a big part of me. It’s a big part of my life. It was a great accomplishment for me to get through schooling and having two little ones at home as a single mom. It was something that was really hard to register in my brain that you can’t do what you’ve been doing, but I’m hanging on to this because I knew still at that point, even though everything kind of took a dive down, including my mood and everything else, my look on life, my outlook and the uncertainty, it took a huge chunk out of my wellbeing.

I decided at some point, probably within that first year, “Well, okay, what can I do? I know that I have been thinking about changing careers. I’ve been thinking about giving up at least the physical part of nursing.” There was something still calling me to the mental health world. Well, I started acrylic painting and I sang. I had sang for many years and I liked writing, and that’s most of my life, as well. Not that I did a lot of it, but I did like it. And one of my goals since I was a teenager was to write a book, which I still haven’t done, but I’ve started a couple of things.

I’ve written a few little things, poems. I have a long poem. Those kinds of things all mean a lot to me as who I am as a person. I decided at some point along the way, I’m going to somehow combine the creative things with the mental health and the background of nursing and help other people on their journeys and their wellbeing, as well.

That became my focus. Not to say that every day is easy or that I can focus on these things every single day. There are still difficulties. I managed to change my viewpoint and my outlook on life and my perception of life, and I managed to change those things to a positive light and decided you can still live. You don’t have to lay back and wait to die because what is the purpose of everything that I’ve done and everything I’ve wanted to be?

I always, always felt like I had a deeper purpose in life. Some people are good getting their purpose fulfilled through looking after their family or through working in a community, and that’s enough. But there’s something more that I’m meant to give. I’m still not 100% sure what it is, but I think I’m finally going down the path now. I decided to paint. There was a year, I think between 2019 and 2020 that I really didn’t do much of anything, but I think that was my angry year. That was my diagnosis year. It was my spot that made me take a look at my life and decided to change my path. I could lay back and die. Life’s over for me, boohoo. I know that’s a lot of us. That’s where we are. That’s where we have been or we’re getting to that point. But there is a point where you can take control of what you can.

I had to look at my blessings. So I had to look at, I have my sons. At that time they were both home with me. I have one still home now. I have my mom, my dad, my sister. Even though I still had a lot of traumas to deal with, which I was currently working through and still am, those people were still close to me and important to me. I was now around my mom’s family, side of the family. They were a huge support.

I felt like I couldn’t quite leave this area and move away, because I thought about moving down east many times, but I had to use what I could. Also because of being from First Nation’s community, I thought there’s so much I can do. So I’m going to combine all the things I know and put them into a wellness journey for other people. I’m still not 100% sure what that’s going to look like, but I have done many paint parties, you might call them. A lot of them are workshops. I get hired by organizations mostly for say, a personal paint party. Probably 95% of what I have done has been organizational workshops. I’ll get people thinking about positive things, so what do they want for themselves that day or that week or month, or what would they like to wish for somebody else?

It could be someone they don’t necessarily like so much. What do you wish for that person or yourself? Think of one word or a symbol. It could be a heart. It could be anything and you put that down on the backside of your canvas. You write happiness or love, unconditional love. Anything that you can think of or a heart or a star or anything and that’s going to be your focus during that painting. The painting session, you go forward with that thought in your mind. We really try to keep negative thinking out of it because it’s very, very easy for all of us to think negatively and go, “Oh, I’m terrible at this,” and oh my goodness, there’s always negative that we can throw to ourselves. We really try to take that out of the equation and just keep everything to a positive as much as we can.

I would say that normally it does work and it helps most people to stay in a more positive mindset. Thinking positively, looking after my mental health that’s been a huge, huge component of my wellbeing. Continuing to be in therapy because therapy can be for everyone, not just seriously ill people. It keeps us on track. That has helped me by looking after the mental health piece, my emotional piece, my spiritual piece, and my physical. We know that physical and mental health and emotional, spiritual all go together. We can’t look after one and not the rest. We can’t expect to do well in one and expect everything else to catch up. We’ve got to purposely look after all of those domains. I find by doing that and keeping myself in check with my mental health as well, even my spiritual health. By spiritual health, I mean even things like connecting to nature. Learning how to connect with nature. Learning how to breathe. Learning how to be calm and maybe put yourself in a better place.

That becomes really easy to do once you’ve done it a bunch of times. You may need to focus and push yourself to do it at first, but eventually it’s just an amazing place to be. So with meditating, learning how to focus, we can do so much for ourselves. People need to start looking at that, giving themselves that gift because it’s there. It is in all of us to do. So by looking at all those domains and looking after each one, we do better for our physical health, as well. My physical being has improved. My breathing has improved. My energy level has improved. My focus is starting to improve a little more, because that’s been very difficult to do.

But all in all, if you look after all of those things in your life, you become a better version of yourself. You start to see the world in a positive light again, and not think so much about how much life I have left. I still do think of that sometimes or, “When am I going to die,” or, “What’s the purpose? If I’m going to be gone in a year or 10 years or five years?” The purpose is because you need to be here now. You need to be here. You’re on this earth. You have purpose. You can take from everything that happens to you in your life and pull it in and switch it around, bam, put it out as something that you can do for yourself and for other people. That was my choice. It’s not to say that I don’t ever struggle with my mood or with triggers or anything that comes up in my life, but I need to know how to come out of that.

With everything I’ve learned through somatic therapy, through there’s a thing called FIT. It’s focused intention technique. I learned how to do that, as well. There is training for that. It’s something you can use on yourself, and it’s something you can use to help other people. Give yourself the gift, I’ll use that word again, the gift of life. You get to go forward in the way you want to, in the way that you can. Just do it in whatever way you’re able to. If you look after all the pieces of yourself, it gets easier. I guess that would be the biggest thing is transforming my life to meet the needs of not just myself, but others as well. But there came a time where I had to look after just myself, and that was fine. I decided that’s okay. This is what I need to do.

My last job was helping to kill me. It was helping to dive me down lower in depth, because I wasn’t able to focus on myself and my needs. That really woke me up. It made me go, “Yep, I guess I have to listen to myself now and listen to my body. It’s telling me things and do something about it. Don’t just keep pushing it back. Do something about it.” I ended up having to move from where I was. My rent was going up a little higher every year. I could no longer afford to live there, because I wasn’t working, at least not getting a nursing income. So my sons and I had to move. Thank goodness for our First Nation. They had been building a new set of townhouses and one had just been completed. We were lucky enough to get to move into that right at the time I was running out of money from whatever resources I could get it from.

We moved in here. The rent is significantly lower. I know not everybody has that opportunity, but it enabled me to start looking at what I wanted in life instead of worrying about the financial piece. So even if it’s a matter of you have to move in with someone or a relative or something where you might not have as much, you might have to give up some things, which I did, but at least it got me thinking about my life again and having a purpose. So that’s where I am now.

My name is Dawn Clarke, and I’m aware that I’m rare.

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phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global