Losing a leg to cancer can be devastating. But for Karen, the need for a total replacement of her remaining hip just a year and a half later made a hard journey nearly impossible. “It’s been a challenge both physically and spiritually,” Karen told me. Yet, in the swirling gyre of emotions and physical hurdles, where one’s natural response could be bitterness or anger, Karen learned to accept her new reality completely. In that place, grace came to Karen when she didn’t expect it. In her sadness from loss and pain, overwhelmed with fear of the challenges that confronted her, it was grace that helped her move forward. The blessings from God, church, family, and friends elevated Karen to see things she couldn’t see before her amputation. “It’s given me the strength to deeply appreciate the simple things in life,” said Karen. “I’m more present, and more reciprocal to love. It’s a story of grace.”
In this story, perhaps, ‘grace’ is an attitude, toward herself and others. It took a positive mindset to be open to receiving what she felt she didn’t deserve. “In truth, I’m receiving and doing things I didn’t think I could do, and I realize I am stronger than before I had one leg.”
It’s still a challenge to step into life and take risks when she feels down and out. But Karen has faith that things can shift in difficult times, by challenging her own negative mindset. When I asked Karen, “What single word would you get tattooed on your body?” I wasn’t surprised to hear, “Grace! It hasn’t always been pretty…but I’ve come out the other side.”
With her faith renewed, Karen is giving back to the people around her.
Tell us about your journey as an amputee.
I was always a hard working person: very athletic, very mobile most of my life. In the year 2000, I started out with this rare condition and a tumor in my leg. I dealt with that through different treatments to salvage my leg, with 5 different surgeries, like limb salvage surgery, and 2 different types of radiation to keep my leg. Nobody really knew that I had any issues because I just maintained my life, and you couldn’t see it. That changed in 2013, when this myxofibrosarcoma returned. There had always been a tumor that was wrapped around the major blood vessels inside of my thigh. This time, the surgery would have entailed much more serious complications. They were going to have to take blood vessels and tissue, and remove muscles and a part of the bone, being that the tumor was right on the bone, just to save my leg, and it could have come back again. For the next two years, I sat on that choice, praying on that choice. In 2015, the tumor had reached a point where it was causing such pain and I couldn’t continue living with that pain, so that’s when I opted to have my leg amputated at my hip.
I live in New Hampshire, and I went to Boston for my surgery, and afterwards did an extensive rehab at Spaulding. I can say, looking back, that it was very difficult, but it was the right decision for me, and at that time I didn’t realize – and this was 4 years ago – how much I would need to work on my body. My limited mobility in walking would require the use of crutches or a prosthesis. I started out with a prosthesis, but after a year or so it became clear that my right hip was really giving me a lot of trouble, and I needed to have an alternate means of mobility and researching online I found SideStix. I ordered my first pair, and I was able to get around a lot quicker and continue working, and it was wonderful. I’ve been able to do a lot outside with my SideStix, and continue being more of the person that I feel that I am.
I really had another hard challenge in January of last year: I had to have my remaining hip replaced from 19 years of overuse. I actually reached out and met Sarah. It was an encouragement to me because she told me she went through a hip replacement, and being as high up as I was with the removal of her leg, it really encouraged me. I had my hip replaced, and I actually found that to be quite challenging, since it was in the winter and I wasn’t able to get outside as much with the snow and ice. I feel like that was kind of a lower time for me, even more so than my amputation. But since then I’ve been able to work harder and push myself a little harder. I didn’t give up, and I’m thankful that I started doing outdoor activities.
I was wearing my prosthesis in the beginning, and I did really well with it. Since my hip replacement, it’s been a little slower getting back to using it. I find that I have to work on my core strength, because when I use my prosthesis, it was making my hip sore. I’ve been getting out more and doing more physical activity and exercise, and I’ve been getting stronger. I’m hopeful that in the future I’ll be able to wear my leg again, but thankfully I can do a lot with my SideStix. Last year, we took a trip to Texas, and I did a lot of walking. We visited a place in Waco, Texas called Magnolia Farms and I did a lot of walking. I was also able to go to a conference with my doctor from Spaulding during that trip. He was presenting about high-level amputations, and I got to share my story. I had about 20 minutes to talk and share about being hip disarticulation, and that was really the first time I’ve ever had the opportunity to do anything like that. It was great! I hope to help other people.
How has your perspective changed in the last few years?
When I had to stop working, it was challenging for me. There was a grieving period, letting that go, but I knew that it was time for me to stop. I’m encouraged that there will be something for me to do again. Right now, I’m not working in a job, but I’m taking care of my family, I have great friends… and if you think about some of the challenges that come with being on one leg, just going grocery shopping and being able to carry my bags into the house is huge! It’s slower, but I can carry the groceries in with my SideStix, I can cook dinner, I can take care of my dog, and I do it with such joy. Just appreciating the simple things means a lot to me. I have really come to a place where simple things are actually big things to me. I don’t take these things for granted, because I really do have a lot of blessings in my life.
I look back at pictures through the last few years, since everything that’s happened, and I just see a story of grace. I’m pretty humbled by it all; that I can be where I am today and be able to do everything that I do, and still have my family. I see myself doing things that I didn’t think I could do. I just went water skiing on my birthday, and that was very unexpected. We were driving out to Northeast Passage in Durham, New Hampshire, where you can rent hand cycles, because, like I said, I’ve been getting out of the house to do more physical things, and I wanted to challenge myself. After we had that experience, the lady was telling us that they had some cancellations up at the lake if we wanted to try water skiing. We watched a few people, and they had this adaptive equipment for people who are limited in different ways. I watched a gentleman get up on the water ski, and he was in a wheelchair; it was fabulous! So I said “okay, I can do this”! I just felt very mentally equipped and free. I was being daring, and laughing, and just having a great time out there. I think that just shows me that there’s a lot of things that I can do, and I don’t need to limit myself.
What is your definition of ‘defy convention’?
I think a lot of it for me is focus. It means not getting distracted and thinking you can’t do things. Put yourself out there and just get up and do them, and the more that you see yourself doing those things, you gain strength from that. I think it’s empowering. If we just sit back and let life lead us, we don’t step up into it and take risks and challenges for ourselves. I know that I have physical weakness in some areas of my life – we all have those – but that’s where the faith comes in. There are unlimited things that you don’t even know that you can do – I’m just starting to find some of those things out myself, and it’ll bring you joy because you’re not restraining yourself with your own negativity. It’s a different lifestyle, because you may be limited physically, but seeing some of the things you’re able to do changes your whole perspective, and I think that helps other people not only see you, but see themselves, and allows them to be more vulnerable and accept, and be able to push through some of their weaknesses too.
I have a visible challenge but that doesn’t define who I am, what I can do or my strengths.
What are your passions?
I really care a lot about people. I would love to somehow work with people who are having challenges like mine, and encourage them, or help them in some way.
I love my family, my friends in my church family, God. I love cooking. I love to do creative things at home. I love bringing life to something that is old. I think it’s just the whole restoration aspect that gets my creative energies going. I think it’s because of what I went through – it’s like a renewal, and looking at something in a different way, and trying to make use out of it instead of throwing it away. I love seeing things that are older that you might have thrown out, and someone’s made it into something beautiful.
What’s your favourite thing about your SideStix?
I love the shocks. I think they’re great, because my shoulders take a lot of stress. I love the grips, and the tips of course! They’re really durable, and can really take a beating. They’re unbelievable. I love that my SideStix look good too. They’re stylish. They don’t look like a piece of equipment that you get out of the hospital. And of course, you can put colours on them! Everybody that sees me with them says “oh, those are cool”!
What’s your idea of a perfect day?
If I’ve made someone else’s day a little happier, that makes me happy. I love that it’s some way to encourage or help somebody else. It’s not so much about myself, but it’s more about the people around me that make my day perfect. Being with people and allowing me to give to them – because of course they always want to help me, but I want to be able to help them!
How do you stay motivated?
I am thankful to the Lord that the cancer is gone and the pain I used to have has been much improved. Becoming physically stronger motivates me.
If you could say anything to yourself the night before you had your leg amputated, what advice would you give?
I would say that there’s nothing too hard that, with the right perspective, your faith, and some hard work, you can’t overcome. It’s going to be hard, but struggling and suffering is not always a bad thing. You’ll come out to be a different person, and through it you’ll be able to understand how other people feel too. I think it makes you a more well-rounded person than you were before.
If you were to get a tattoo of one word, what would it be?
Grace. I am so thankful for my husband for staying by my side. This man works hard. It’s not all about me; my family went through a lot too. I’m so grateful to God for my husband, my children, our family and friends and our church.. I’m just so thankful for my family because it hasn’t always been pretty. I’ve had some pretty horrible days, you know, and there’s misunderstandings and conflict, and you go through all of that. But that’s why I say ‘grace’ because you come out of it all on the other side, and I’m just so thankful. I don’t ever want to be fake or phony, or try to make everything sound perfect, because it isn’t. I don’t need a silver lining, but I still think that good things can come out of bad things, if you look for them.
Do you have a message for other crutch users?
I really do believe that keeping your core strength, no matter how old you are, helps. It supports all the joints, even if you take little, tiny steps. Even if you feel like you haven’t exercised, or you don’t even know where your core is anymore, it doesn’t matter. Just take little steps to support your core, so that when you use your crutches, you’re not putting all that stress on your joints. We have a lot of strengthening that we can work on. I know how important it is to keep my body strong and protect my joints, because I need to live with one less leg. I’ve been working on my core strength again with Pilates, and I actually enjoy being in a class with other people, and being able to share.
Another thing for crutch users is you don’t have to be fast at everything. That bothered me a lot. Just take it slowly; don’t rush. You have to be mindful of your surroundings, and of falling. Thankfully that hasn’t happened for me in a while, but it does happen. Don’t let discouragement get to you. I think you just have to understand that it may be difficult, but you can still go forward.