Rebel With a Cause

Tracy Danzey with her SideStix

Tracy is smart, spirited, and articulate. A nurse by trade, and a mother of a nine-year-old son, she is not someone who looks for a fight. However, when she learned Denmark-based, Rockwool, a stone wool manufacturing facility, was to be built in the community she had just left, she had to move back. She knew she needed to be in this fight for very personal reasons. She was a rebel with a cause and ready to act for her community.

As a high-level amputee, Tracy feels the rare form of bone cancer she contracted, that led to the amputation, was likely due to chemical pollution from the heavy industry she grew up around as a kid. She knew as a community advocate, she could be the visual cue and her story the inescapable testament to the community’s real concerns about the potential health and environmental risks of this type of manufacturing. “If my amputation can allow people in government and the community to understand the health risks that come with chemical pollution, then the pain and suffering I have to endure as an amputee is worth it.”

Tracy Danzey

Tracy Danzey

To ‘bring the point home’, Tracy decided to walk across Denmark. “I wanted to start the conversation in Danish territory, to enable Danish citizens to be aware that their country’s laudable ‘low carbon footprint’ is partly due to exporting Denmark’s polluting industries,” said Tracy. She has also lobbied for the ‘Clean Water Act of West Virginia,’ which passed. A legacy she feels will maintain the health of her son, community, and generations after that. “I feel there is power in speaking your truth. I want to stand in, speak to, and advocate for, all kinds of truths.”

In her search for honesty, Tracy is learning to be wise. She is dedicated to doing good for others, maintains a network of supportive relationships, and continues to make her life worthwhile. She is a rebel with a cause. What a great way to Defy Convention, be the best role model to her nine-year-old son, and be genuinely happy in life.

What challenges your mobility, and how do you overcome this challenge?

Pain and exhaustion challenge my mobility most. I have a right hemipelvectomy and have always had absolutely wild pain. I have begun to understand my triggers and agitators, and have gotten better at understanding the correct medication and therapeutic regimens to deal with stump pain, but there has been other pain, for which Sidestix has made an immense difference. At 5 years post-amputation and into full time use of classic Canadian style crutches, my elbows, shoulders, and wrists were beginning to have acute pain as well as chronic pain. I began to reduce my movement. I spent more time in resting, even though I desired to move. I knew that I needed something to change, but felt that this must be just part of the process. A few months later I found out that my husband and I were expecting our first, and very unexpected, baby and I immediately began searching for better sturdier crutches because I would have to carry my child on the front of me in a sling. I needed a sustainable option that would get me through the rearing of a child. I developed a support group for hemipelvectomies on Facebook, and went to them for advice. The resounding answer was “SIDESTIX”! Within one week of use, all of my upper body joint pain was gone. Completely. And it has never returned.

Tracy Danzey with her SideStix

Tracy Danzey with her SideStix (Photo by @sethphoto)

The challenge of exhaustion has also been helped by Sidestix. I struggle with them less, so I feel less tired than I ever have. Other things that I do to assist with exhaustion include setting an alarm on my phone twice a day to remind me to sit down and take a 15-20 minute rest, elevating my leg, and giving my hands a rest. I do not allow myself to simply turn off the alarm. If it’s not a convenient time, I reset it for a little later when it will be convenient. This has helped me a lot, and its a kind way to remind others around you that you need to provide yourself with some self-care. This single strategy has been so helpful to me as a mom, who would never sit down otherwise. My 9-year-old son now sees it as a great opportunity for us to read together. Right now we are reading “My Side of the Mountain”, which is very inspiring for me. I tend to want to push myself, and want to improve things; I want to be the one who’s filling those gaps for everybody else, and I want to do a good job. It’s been difficult for me in the past, but I think it’s just gotten better with age. I’m realizing why I don’t need to push myself like that, when I need to take care of myself. 

What does ‘Defy Convention’ mean to you?

For me, defying convention means nothing more than doing what works for you. I go to the grocery store and bend my waist over the handle, while pushing the cart like a skateboard with my one leg. My butt is straight up into the air. Sometimes people stare. Some of my hemipelvectomy friends have said that they would not do that. But for me, it works, and it works well! So, I do it. That is what defying convention means to me. Many people struggled with watching me mother on crutches, with my baby in a sling on my chest. But frankly, that’s just what worked. 

Tracy Danzey with her family

Tracy Danzey with her family

What are your passions in life?

I grew up in the Parkersburg, WV, where Dupont dumped C8 (a Teflon byproduct) directly into our waterways. We now know that it has caused cancer and other illnesses for many people within my community. Many of my friends and family have been affected and/or died as a result. I was a competitive swimmer and an avid river recreationalist throughout my youth, so I spent most of my developmental years swimming in and consuming those tainted waters unknowingly.

In my twenties, my thyroid stopped functioning correctly, (a known side effect of C8), and I developed Oseosarcoma of my acetabulum by age 25. This led to the amputation of my right hip and leg and an immense amount of chemotherapy and treatments to survive.

I am also a nurse, and have been for the last 20 years while I’ve been well. My passion in life is protecting the health and wellness of my community. I like to educate and advocate for friends and neighbors to protect the environment that surrounds them. Water protection is my biggest focus, and in that way, we are ALL connected. Research shows that C8 is now found in nearly all waterways, even in the Arctic. I see that we are all connected and that we all must care for one another and this earth that we share. I do whatever I can in my community to support that notion and I am very passionate about that.

What has been the defining moment in your personal or professional life? 

I really believe in environmental responsibility, and, of course, my experience in childhood really emboldened those beliefs, but I would say definitely being a part of creating such a potentially big change in West Virginia, where we’re looking at what’s happened to our water. We had moved to Florida temporarily when Rockwool came into the area, and I was feeling really disconnected from the situation. I realize that I had a visual aid – that I WAS a visual aide of what this company could potentially do in our area. I asked my husband if we could move back to West Virginia – we hadn’t even been in Florida six months, and we had purchased a home and everything, but I said I need to move back, I just need to move back and fight this fight. I think he thought I was crazy, but we did it. I’m not somebody who looks for a fight, I’m just not, but I just felt like this was my fight, and I needed to be in it. I needed to make that mental shift to open myself up. It was a big step for me to just walk into the situation and be honest about what happened to me, and use that to help people understand. It was not something I was comfortable with, but people understood right away, from looking at me physically, the point I was trying to make, which is just for this not to happen in the future. I think that’s part of what led to the bill being passed, because it’s a hard thing for anyone to say. It’s a simple ask: I don’t want corporations to be poisoning my water and my kids. It was a big moment, and I’m glad I took it, because its a conversation we need to be having, not just in West Virginia. 

Tracy Danzey with her SideStix in Denmark

Tracy Danzey with her SideStix in Denmark

What is your favourite thing about SideStix? 

I love that, as a company, SideStix is always looking for solutions and improving their product. I love that the company takes feedback from customers very seriously. That is very special and creates a rather intimate relationship between customer and company. I have never ever experienced that with any other durable medical equipment company, large or small. As for the product itself, I have always felt that these crutches have given me an immense amount of freedom that I did not have before. I could not hike like this before, or walk on sand like this before, or walk on rocks like this before, or even just “trust” a crutch like this before. I don’t even think about my crutches or worry about them anymore. I never had that before Sidestix. I just walked across Denmark and never once did I seriously worry about or even do more than a simple inspection of these crutches. That’s just plain amazing. I never expected to find a pair of crutches that could free me in that way. I used to avoid hikes because I worried about what would happen if my crutches failed in some way. I NEVER avoid hikes or anything else anymore. THAT is life-altering, and I never forget that. I love these crutches and this company.

More specifically, I love the shock absorption and the pivoting feet. Before I used Sidestix, I used to perpetually tweak my meniscus, and then be icing and resting for days. Ever since I have used the pivoting foot, that no longer happens to me. So, that’s several days a month that I’ve regained!.

Now, let’s talk about the natural position of my arms and wrists while using SideStix, the shock absorption, and those new fin handles! Those things together means NO shoulder, wrist, or elbow pain from crutching. None. I didn’t think that was possible. And finally – durability. Wow. I put my crutches through the ringer every single day. I have replaced regular wear parts, like handles and tips, but I have never EVER had to replace my Sidestix crutches. Every other pair of crutches I have ever owned lasted no longer than 2 years. My first SideStix, which I still use daily, are now going on a decade old.

What is your idea of a perfect day?

My idea of a perfect day is getting up early, hiking a section of the Blue Ridge Mountains with my husband and son, taking a dip in the Potomac River on our way home, then settling in on our big couch for dinner and a movie together. During the COVID-19 crisis, we have chosen to homeschool our 9-year-old son, and we come close to achieving something close to this almost weekly. This has been a small blessing that has sustained our spirits through this time. I am very thankful for it.

Tracy Danzey with her Family

Tracy Danzey with her Family

What are your best tips for staying motivated?

  1.  I have a dog and he is the BEST! He makes me walk 3 times a day and has completely changed my state of health. I can do so much more because he keeps me healthy and honest. He doesn’t accept excuses and I just love him to death for that.
  2. I seek out physical therapy from time to time. What I discovered is that I often fall back into bad habits. It happens slowly, and I often don’t notice until I am in pain or have less stamina. Physical therapy helps me to regain proper posture, create muscle memory to maintain healthy movement, and identify factors that I can control with my body, movement, and pain control. I feel my best in the 6 months to a year after being discharged from physical therapy. I look forward to it now.
  3. I schedule rest times for myself every day. Even if they are only for 5 or 10 minutes. I schedule them and set an alarm on my phone. There little moments of rest help me feel motivated for the rest of the day.
  4. I surround myself with “can-do” people. People who ask me, “what can I do to support you?”, rather than people who say, “I’m not sure if you should”.
  5. I spend a LOT of time with children. They push me well beyond my physical comfort zone, and they could care less if I have one leg or two.
Tracy Danzey and her son

Tracy Danzey and her son

Do you have a message for other crutch users?

Get out there. Try it. Do the most that you can, and then go a tiny bit further. Then the next time you go out and try it, go just a little further than you did last time. Small victories are good. Trust in your equipment and see where it can take you. See it as a tool rather than something that you depend on. What can you do with this tool? How does it work? Think of it as YOUR tool, for YOUR life. How does it work for you and the things that you want in life? And once you know how to use your tool in a basic sense, expand your use of it. Adapt new ways to use it to accomplish more and different things. Go for it!

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