Michael Carns is a Marine and National Guard member and a single father with three children. He was diagnosed with multiple sclerosis in 2013. He experienced rapid physical deterioration. Within two years, he has gone from independence to relying on a cane, a walker and finally a scooter to get around. Mike is fundraising for HSCT (hematopoietic stem cell transplantation), a course of treatment that is not covered by insurance. We spoke to Mike about the daily struggles, setbacks and victories that define his life with MS.
How much did you know about MS before you were diagnosed?
I had never been personally affected by MS and neither had anyone in my family. Since my diagnosis, I’ve learned that parents of friends and some of my own friends growing up had or have MS. I share the information I find with them and they do the same for me. To defeat this disease, you need to fully understand it.
Where do you find MS information?
I typically find MS information online. I am a member of several different MS groups on social media, many that specifically relate to HSCT treatment for MS. I have been able to connect with doctors, researchers and others with MS through social media. We share a common enemy, so it makes sense for us to talk to each other about it.
Does MS disrupt your daily life?
My days are very limited. The first hurdle I face is memory: when I wake up, will I even remember what I need to get done that day? Most days, I get out of bed, watch TV, play games with my children, make meals for them and go back to bed. With MS, you learn how to manage your time carefully. I plan ONE thing to check off my list per day – anything else is a bonus. By the end of the day, even though I feel exhausted and worn out, I’ve exerted virtually no physical energy.
Has your diagnosis affected your family?
My youngest son wants to be a Navy SEAL. My daughter wants to work in the music industry, and she would love for me to walk her down the aisle. My eldest plays football and is going into high school this year. He wants to play for the NFL one day, of course, and join the Marines once he’s graduated from college. I used to coach him in football when he was younger, but today, I can’t get to his games without my scooter and I can’t stand the heat long enough to go and see him practice.
It’s disheartening. I want my kids to have the childhood that I got to have. I didn’t have to worry about Mom or Dad, but they have to spend their time thinking, ‘Is Dad okay? Do I need to do laundry or dishes for him?’ My kids understand that I have new limitations now. I want them to be able to be kids again. I feel like I’m taking time and life away from them as I’m battling this disease. I want to be there for my family again.
How has MS affected your financial situation?
The cost of potential treatment options emerged immediately as a barrier when I began researching. If the HSCT treatment is successful, the hope is that I won’t need more treatment in the future, so this is one big cost that needs to be overcome as quickly as possible. I spend a lot of my time each day trying to fundraise successfully so my father doesn’t have to give up his house to get me treatment. Even small bills can be difficult to keep up with as so other daily expenses add up. I’ve had to cut down my food bill and make other sacrifices to keep up with expenses.
Will reaching your fundraising goal and pursuing treatment change your life?
I think a lot of stress will be taken off. We will all be able to live with what I can and can’t do definitively. I’d be able to return to work and be a part of society, making money instead of just receiving it to get by every month. I’ll be able to do simple things like answering phones and take care of household activities without pain or exhaustion.
It would be wonderful to experience my body healing itself. I want to be able to enjoy watching my kids grow up. Anyone who has or had MS knows that feeling – it’s awful to feel that loss of independence. I want to be able to be active and independent again. Even if I can stay where I am now, I can learn to live with it. I just hate feeling like things are getting worse.
Ideally I’d like to get back to coaching sports and go to school to choose a new career path. I’ve always wanted to be a chef, and there are so many other paths that attract me, including teaching. Right now, I can’t make plans for the future — there’s no roadmap with MS. As a society, our technology has come so far – we need to come up with a way to provide effective MS treatment to the people who need it. I don’t want to slow down or manage MS – I want to beat it.
What keeps you positive while you battle MS symptoms?
My perspective is that if it wasn’t me diagnosed, it would have been someone else. With everything I have gone through and done in my life, including fighting in three wars and living an active and adventurous life, I’m still here. Maybe I have this condition because someone else would not have been able to handle it or would have caused harm to themselves or their families because of it. That train of thought keeps me focused.
Humor is important, too – you learn to laugh at yourself when you can’t button a button or you slide off the bed as you’re leaning on it for support. If you can’t laugh and continue to live your life, MS will get the best of you.
It’s amazing that it takes a diagnosis or a negative event like this to change your outlook. When you start to lose abilities and time, you look back and think, I took it all for granted. You become a lot more empathetic – now, when I see someone in a handicapped spot who doesn’t look disabled, I understand that their battle might be on the inside.
What piece of advice would you give to someone who was just diagnosed with MS?
Connect with other people who share this condition. Connect with me! Find reliable resources online. Start looking around, and if you have questions, ask them all. Make your own decisions about management and treatment based on the information you find. You are the best advocate you’ll ever have. Doctors, friends and family members can support you, but it’s important to take this process into your own hands. Reach out – don’t ever be afraid to ask for help or advice.
Visit https://helphopelive.org/campaign/6491 to follow his journey or donate to HelpHOPELive in his honor. HelpHOPELive does not endorse any specific treatment facilities or courses of treatment.