Lisa Wirkus is a powerful woman. She knows who she is and where she is going. She has always been strong. She has had to be. Since birth, she has dealt with a hereditary bone disease that caused progressive hearing loss, resulting in total deafness in her mid-twenties. Assertive and inquisitive as a child, her parents encouraged her to be a full participant in her medical interventions. Lisa is Deaf, and now lives with an AK amputation and a recent diagnosis of Primary Progressive MS. Creating her own way is the ONLY way for Lisa to remain resilient and independent. “I’ve never been able to take something ‘off the shelf’ to work for me.” Instead, she works with her team of doctors and prosthetists to create custom solutions that work.
Adapting to various physical challenges takes focus and curiosity, as well as insight and compassion. With the aid of bilateral cochlear implants and a hearing aid, Lisa works full-time as an American Sign Language video interpreter, and part-time as an ordained United Methodist pastor. “I feel alive and powerful when I am part of a meaningful, collaborative project,” Lisa says. She feels that solutions for one’s health care “need to adapt and work for you, instead of you working for it. If you are willing to go the ‘extra mile’ to make things work, I believe it can make a world of difference in your ability.” For this reason, Lisa enjoys SideStix. She likes SideStix’s modular nature and getting involved in making sure the custom fit and features suit her lifestyle.
“How can we make life more enjoyable”, asks Lisa, “so we have more time to do the things that we love, and take less time doing the things that we have to do, but not necessarily love to do?” Well, being proactive in all aspects of your life, starting with health care, allows you to have more time to do the things that are fun in life. Developing a variety of solutions that work for you, can make you more adaptable. It can also keep you “on track and prevent sudden derailment” when difficult and unexpected challenges come your way.
What inspires you to do what you do?
I haven’t really had a choice about any of this stuff that’s happened to me. Amputation was definitely the right choice for me. It definitely improved my quality of life, even though it hasn’t been an easy road. Osseointegration has definitely made a huge difference. But with all the medical maladies I have had to endure, it’s not like I could just wish them away. It is what it is, and I think it’s up to us to take what we’re given and decide how we’re going to approach it. I just don’t see the point in wallowing in sorrow for myself, even though I suppose that could be an option. I enjoy my work, and I think I have a lot to offer to the world in different capacities. Why should I let things that happen to me derail my life and dreams? It seems like it’s up to us as people to decide how we want our lives to go, and I feel like it’s easier to choose to have hope and to be happy than to just say, “ho hum, life is terrible”.
When do you feel most alive?
I feel most alive when I’m a part of innovation, especially in a collaborative environment. It makes it more meaningful for me if it’s with other folks at the same time, and we realize in that moment that what we’re doing is making a difference. That drives me in life: making a positive difference in some way. What really invigorates me is when you realize what you’re doing is something that has never been done before, and that it can make a positive change in another person’s life. That keeps me going.
Does that also transpire into your role as a pastor?
Yes, absolutely. I think my real love is with Deaf ministry, and I’m thrilled to announce that I will be appointed as the full time pastor of a Deaf United Methodist Church in Baltimore, Maryland beginning July 1. There’s a lot of layers to that as well, because the Deaf community does not consider themselves to be disabled as the amputee community normally would. The older Deaf community often missed out on incidental knowledge. A long time ago, many parents weren’t learning sign language, and TV didn’t have captioning until the 80s, so many older Deaf people would have to turn to each other to learn things. What I really love about Deaf ministry and being in that context is that it’s not just standing at a pulpit and signing and preaching. It’s things like going to veterinarian offices and helping to facilitate communication to ensure that while people are grieving, they’re able to understand what is happening and feel supported..Those are the types of things that I love – the ways in which I’m able to be a part of other people’s lives in unique ways. Those types of connections, when you can see the difference later when they come back to you, is just kind of life-giving to me. That’s why I like to do what I do.
What has been one of the most defining moments of your life?
Interestingly enough, I think the defining moment that I would highlight, since it has to do with mobility, is being diagnosed with MS. Even though I went deaf as an adult, we dealt with that on some level and largely mitigated it with cochlear implants. Yes, I had to have my leg cut off because I had this terrible pain, and there was a tumor that was growing, but we mitigated it, kind of, with a prosthetic and now osseointegration, and lovely crutches that help me get around better. The MS has been different.. I’m not big on asking for help from other people, but the MS has changed that, in that I was no longer able to do everything for myself. I had to come to a place where I recognized the fact that I needed to accept help from others. That was extremely hard for me because I’m typically the one who is giving and helping others. I’ve had to come to a place, not of codependency in an unhealthy way, but of being interdependent with other people and allowing them to help me in similar ways that I have helped them. That’s been a turning point as it has taught me humility, but it has also helped me to connect on a deeper level with others. It gives you more empathy when you’re in the position of needing to accept help from others.
My parishioners recently did something really nice for me. When I had my recent osseointegration surgery, they brought over some home-cooked meals. And they even said after, “Thank you so much for letting us serve you.” It’s like a gift to them as well, and that is something that was a revelation to me, because I felt like it would be a burden. I don’t want to feel like I’m a burden to others. I mean, I drove myself to work the day after I had my leg amputated! But sometimes if you open yourself to the possibility of allowing someone into that vulnerable space in your life, it can create really meaningful connections.
Have you picked up any new habits that have improved your life?
Intentionality would be my answer to that. Being intentional about my actions, what I’m saying, and the way I go about doing what I do. My mobility challenges have forced me to be more intentional, because I used to be able to get ready in 20 minutes and be out the door. Now, it takes me at least 45 minutes, because things are just harder. I was also a very “fly-by-the-seat-of-my-pants” type of person. I’ve gotten better at planning in advance, and accepting that that day may not turn out exactly the way I’d like it to, but that doesn’t mean that it has to be a bad day! And I think the intentionality helps that, because you can set the day on the right track by starting with the right mindset, and not being in a rush.
What does ‘defy convention’ mean to you?
I love that that’s your motto! I guess I didn’t know it was also my motto – That’s me in a nutshell! I have to defy convention because I am not a textbook patient in any sort of way. We have always had to be very creative in the prosthetics realm when trying to get anything that would work for me. Luckily, I’ve been able to connect with others who are also interested in defying convention so that I’ve been able to get things that work for me; anything that comes off the shelf, including things that work for other above knee amputees, have not worked for me because of my numerous issues and overlapping problems such as the vertigo from MS, the numbness, and random muscle weakness. You need to find something that adapts to you and works for you, instead of you having to work for it.
I think it’s very important, as we’re thinking about defying convention to adapt to all the individual needs to the specific person, and for me, there are a lot of different needs. It’s really important to me to be able to work with folks who are willing to think outside of the box and go that extra mile to ensure that I can have some sort of product that will meet my personal needs, and that may mean creating something different than literally anybody else has in the world! And the other part of it is having people that will listen to you. I know my body better than you know my body; I know what it feels like. Sometimes people will say, “This is what is best for you,” but I know this is not going to work for me. I think collaboration is just really important, and I see that SideStix has been set up based on collaboration, and asking people what they really need to meet the unique needs of their customers.
What’s your favourite thing about your SideStix?
I can’t think of a better word for this… but the bounciness! (Laughs) The fact that it takes all of the pressure off of your shoulders and your elbows makes a huge difference in how much energy I use to crutch around, as compared to traditional straight crutches. With the MS, it makes a huge, huge difference. I also enjoy the tips that allow you to be on uneven ground in a much safer fashion than some other tips would allow. Also, the ergonomics of the hand grips that I have are really helpful too. I don’t get calluses on my hands like I used to.
I also love the freedom, honestly, which is what they give to me. I’m able to crutch around for so much longer with them than I could with the other ones. They give me the freedom to just be able to go and do whatever I want, whether my leg is cooperating with me that day or not.
I’m thankful for the option of having crutches. I don’t have good balance, but I can swing around and get around everything and go up and down stairs and all of that. I’m very grateful that I have the option. I think what makes a big difference is having a product that works with your body instead of against it.
What do you consider your greatest achievement?
My biggest achievement in life – and it’s strange because I’ve done other things that could be considered way more impressive to the world – is running a summer camp. I took over a camp for developmentally disabled Deaf adults from a person who is now a bishop in the United Methodist Church, who is also fluent in sign language.She set it up because these younger Deaf adults wanted to keep coming to camp, but there was no place for them because they aged out of the kids’ camp. I’ve been with this camp for over 10 years now, and it’s probably my favorite achievement. It has grown from 12 campers to an average of 30, which is all we can handle, so we end up having a waiting list every year.
Being able to see the campers have full access to language is the best. Some of them live in group homes with hearing people and don’t have regular communication access. Some of them live with their parents who don’t sign fluently, so just being able to see them interact with one another and guiding them to learn new things is just my favorite. The joy on their faces is more than enough thanks for all the effort put into making the camp happen every year.
What in life are you most grateful for?
The support of my parents. They’re 75 years old now, and my mother has Parkinson’s, but I’m an only child and am very close to both of my parents. They’ve always been super supportive of me my entire life, but even to this day, I’m grateful for their support by the way in which they raised me, that helped me to become the strong person that I am, and I’m grateful for their continued support even now. They’re both smart people, and I appreciate the fact that they passed down their intellect to me and helped to teach me to love learning at a young age. I’m just thankful that I’m able to be close with them still. Family is really important to me, but I’m also thankful that I have a huge support network and lots of really good friends and mentors. I’m just very grateful for connections!
What advice would you give to a new crutch user?
Don’t be afraid of crutches. Try to see what you can do with them. I can do a lot of things with my crutches. Pretty much anything that you could do with two legs, I can do with crutches! Go up and down stairs, go on uneven terrain, etc.. You can use them one at a time, so don’t be afraid to try whatever you want. If you put your mind to it, you can figure out a way.