Name: Kendall Harvey
Age: 37
Where do you call home? Austin, Texas
What is your education? I got a degree in Public Relations from Texas State University in 2009.
Who do you live with? My husband, Kyle, and I will celebrate our 15th wedding anniversary this summer. We have a 9-year-old son, Brooks, and a 7-year-old daughter, Collins.
What’s a typical day for you? My days don’t look that different from many other moms of young ones besides being slower, less productive, and more complicated. I still enjoy Girls’ Night Out, participating in bible study, volunteering at my children’s school, cheering on our teams at youth sports, watching trash TV, reading the news, hosting parties, taking naps, splurging in online shopping, laughing, crying, and zoning out – just like everyone else. FA didn’t change any of what I enjoy doing, it just changed how I do things and some of what I can and can’t do.
I have had to realign my priorities, to be sure, but the core of what makes me who I am is unchanged. I am still full of hope for what tomorrow may bring. I still prioritize spending time with friends and family. I still love my life, even though it looks different than I had planned.
Since 2018, the first action of my every morning has been to take the study drug. It makes FA the very first thing I think about when I wake up. Every morning, I pray that this drug will work to slow my symptom progression today and every day, then I reach for my balance-supporting grab bar to get safely out of bed and within reach of my walker which is dutifully parked at the end of my bed. Some days, my thoughts linger on and center around FA. On other days, I just get wrapped up in the busyness and forget about FA.
A good day is a productive day where FA doesn’t get in my way or cause more than the baseline standard of heartache that I’m used to. A bad day is shadowed by gloomy FA thoughts or injury. It usually takes me two or three days to bounce back completely from a “bad day.”
How long have you known you are living with FA? When and how were you diagnosed? In 2013, we noticed some troublesome developments when I’d participate in sports, work out, or do anything remotely active. I was slower, less sure-footed, weaker, and I’d tire easily. I was falling in sand volleyball when I wasn’t purposefully diving for the ball. My body wasn’t responding the same way when I’d go out for a jog, chop vegetables, carry heavy laundry baskets, or sing along to fast songs. I knew that a 20-something who has been healthy and physically active her whole life doesn’t start losing her balance and becoming weak, slow, and tired for no reason.
In March 2013, an ear, nose, and throat doctor quickly ruled out the inner ear problem Google had convinced me I had, and targeted exercises weren’t fixing the problem. So I decided to go to my primary care doctor, who’s also an internal medicine diagnostic specialist, to discuss my concerns. She agreed that something was amiss and said it was probably neurological, but she wanted to rule out any deficiencies, intolerances, and abnormalities with simple bloodwork first. All of the results looked normal, so she referred me to a neurologist.
After an extensive conversation about my medical history and recent concerns, the neurologist performed a thorough exam. He said, “I think something is going on here, but I’m not sure what yet. It could be an allergy, a tumor, a movement disorder, or something genetic.”
My mom, who came to the appointment with me, and I both said, “Well, it can’t be genetic because everyone in my family is fine.” My doctor assured us that we would figure it out together.
The next few months brought a slew of bloodwork, MRIs, X-rays, appointments, Googling, and worrying. Everything was coming back “normal,” but we all knew that what was happening to me wasn’t normal.
In July, a tech came to our house for yet another blood test. This time, they planned on conducting a full genetic panel. On Aug. 19, 2013, my parents, Kyle, and I went to my neurologist’s office, fully prepared to hear that everything had come back normal.
Instead, the doctor said, “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” He looked just as shell-shocked as us.
Are there any others with FA in your family? As of now, I am the only member of my immediate and extended family diagnosed with FA.
Describe your transition from walking to walker/wheelchair. One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid.
For me, the thought of needing a device to get around in my day-to-day activities was soul-crushing. I thought that it signified the end of my life as a “normal” and healthy person.
I knew I needed a walker when my falls became more frequent and out of control. At the beginning of my FA-related balance symptoms, my “falls” were more like stumbles or bumping into things. I would find random bruises on my body, but that was about it.
Then, with my falls, I started ending up on the floor, usually with a minor injury such as a tweaked knee, a jammed thumb, or a sore shoulder. Then I had the BIG fall, the one in which I obliterated my ankle, requiring two metal plates, 13 screws, and eight weeks in a wheelchair.
While using the walker during my recovery, I became extremely frustrated. Walking was incredibly difficult, even with the walker. It didn’t feel like an “aid.” It felt like something I was just pushing around while I continued to struggle.
My physical therapist spoke wisdom that affected my life during my recovery. She told me, “You have FA. Walking will be hard for you no matter what, with or without the walker. The walker won’t make walking easier, but it will make your walking safer. Think of it as fall prevention instead of a walking aid.”
Despite my stubborn fear of “becoming dependent” on my walker, I decided to start using it all the time. My friends in the FA community told me that I would come to appreciate the walker for the freedom, safety, and independence it provided. That seemed so backward to me. How would becoming dependent on an assistive device give me independence?
A couple of months later, I now see what they mean.
Before I started using my walker in public, I would find myself waiting for someone to lend me an arm or to bring me something to push, such as a stroller or a shopping cart. I lacked the confidence and ability to do anything by myself. Now with the walker, I can go to my son’s preschool to pick him up by myself. I can run in to grab dinner to-go by myself. I can hop up and walk to the kitchen for a glass of water by myself.
I’m not paralyzed with fear anymore. I know that I can safely accomplish my day-to-day tasks with my walker.
Yes, I know that falls are still possible even with my walker, but that possibility is greatly reduced since I surrendered my stubborn pride and became dependent upon my walker. I have renewed independence. I can be “normal” again! And the adjustment wasn’t nearly as hard as I thought it would be.
What do you like to do to stay active and what type of exercises work for you to stay strong? I force myself to keep social obligations, which forces me to do what I can to be my best self. I don’t drink alcohol, I eat healthy, I exercise daily with my Total Gym at home, I do floor pilates exercises my physical therapist taught me, I readily accept help, I depend on assistive devices, I sleep 9+ hours nightly, I do Epsom salt baths, and I take all medications recommended by my doctors.
Do you have any hobbies or special interests? I am a wife and a mother so my time isn’t often my own, but luckily the things I love to do happen to be the things my family loves. I love sports. Before FA took away many of my physical abilities, I played softball and sand volleyball and I was an avid gym rat and runner. My kids do baseball, lacrosse, basketball, swim team, gymnastics, and soccer, so I get my fill of sports! I love cooking and eating, any activities through my church, playing in our pool, hosting get-togethers, enjoying movies and TV, and I am obsessed with my pets.
What is a good trick to make daily life easier? Accept help. Humble yourself and prioritize your energy and safety by accepting help from devices (mobility aids, safety rails, grab rails, etc.) and friends & family. Extend yourself copious amounts of grace.
When FA gets you down, what do you think/do to feel better? It’s no secret that the negative things in life are often louder and demand more attention than the positive ones, and FA is a very loud negative in my life. Although I’m used to being dependent on mobility devices, it’s still the first thing I see when I stroll past a mirror or see myself in a picture. I do eventually see past it, just as anyone would see past any “accessory,” so I shouldn’t have such a hard time believing that other people can see the person behind my walker.
To keep myself open to words of affirmation from others, I need to eliminate the loud, negative, constant loop of FA-centered self-talk I keep finding myself in. I need to remind myself that I’m more than my disability. I’m worthy of kindness. Pushing a walker, riding a mobility scooter, or getting assistance from others doesn’t negate all of what makes me who I am; it’s simply a facet of my reality.
Therefore, I’m making the choice to combat this negativity with the following affirmations:
- There’s more to me than my disability.
- I’ll be the best wife, mother, friend, and daughter I can be today.
- God called me to this life, and he’ll equip me for it.
- I can’t control what FA does to my body, but I can control my response to it.
- Asking for help is a sign of self-respect, self-awareness, and strength.
- I’m still learning, so it’s OK to make mistakes.
- My disabilities don’t outweigh my abilities.
- Today is an opportunity to grow and learn.
- I’m worthy of good, beautiful, happy, and funny things.
What is one way living with FA has POSITIVELY affected your life? FA is an incredibly humbling diagnosis. My support system — or my village, as I affectionately refer to them — is a dream team. My husband is an unwavering optimist with the kindest helping nature of anyone I know. My parents, who live just one street over, are the most generous people you will ever meet and they are always willing to lend a helping hand in the form of doing tasks that I can’t safely do, accompanying me, babysitting, flying to Emory for clinical trial visits, supporting rideATAXIA, and on and on. My friends and neighbors are constantly relied upon sources of assistance, encouragement, laughter, advice, and sympathy. And as my kids get older, I am blown away by all that they add to my life. They are an endless source of entertainment, motivation, purpose, compassion, distraction, help, and love. My village has quite literally kept me going and without my friends and family, I don’t think I would survive FA.
Also, humbling myself to accept my limits, and living within those limits, has taught me how to ask for help. It has allowed me to grow in compassion. It has also allowed me to slow down and be more intentional.
What is a favorite motivational quote of yours? And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. Romans 8:28
What is a piece of advice that someone with FA has given you that encourages and inspires you? “It is our choices, that show what we truly are, far more than our abilities.” -Albus Dumbledore.
How can I escape the inescapable realization that every aspect of my physical reality is challenging, will continue to be challenging, and will grow more challenging as my symptoms progress? How do I make peace with that so I can still have a productive and fulfilling life?
While I haven’t found a tried-and-true cure-all for this particular brand of FA blues, I’ve discovered a few tips for my mental health. One of my favorites is borrowed from a Disney movie, of all places. In Frozen II, Olaf the animated snowman says, “We’re calling this ‘controlling what you can when things feel out of control.’” My body feels out of control constantly. If I just focus on doing what I can to keep it safe, I’m “controlling what I can.”
I wish I didn’t have to make careful accommodations for simple tasks like getting out of the car, sitting on my driveway while my kids ride bikes with the neighbors, putting dinner in the oven, getting dressed, or going to bed, but that’s beyond my control. I can’t control what FA does to my body; I can control only my response to it.
Another mental health tip I rely on when I’m fixated on the unfairness of being me is to adjust my perspective. Yes, it’s hard to do things, but what’s my option? I can try to keep doing things that are unsafe, pout and avoid tasks, ask for help, or figure out a way to complete an action safely.
I’ve paid the consequences of the first two options time and time again; they rarely lead to a happy ending. That makes help and resourcefulness the more ideal choices, in my humble opinion.
Life with FA isn’t easy. It is all about choices, more so than abilities. My challenges are countless and require deliberate adaptation. But there’s still beauty in my life, and those adaptations are worth it.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I wrote an “open letter to my newly diagnosed self:” Your world was just rocked and turned upside down. I know you feel like your future is an impossibility now that Friedreich’s ataxia (FA) has clouded your blue skies. I am here to tell you that yes, that future is gone. But it doesn’t mean you have no future!
Your future will change for better and worse. And it is a wonderfully wild ride that you will learn to love.
As someone who is eight years into the FA journey, I can offer some advice.
Keep your friends close. Those in your village want to help you, and you will need them. Your friends might not fully understand what it means to have FA because they aren’t physically experiencing it themselves. But they will want to hear everything you are willing to share so that they can advise, sympathize, encourage, assist, and support you.
They will want to help you carry the burden of FA and lighten your load. Be upfront and honest about your journey and open to what your loved ones have to say, even when you are bitter or heartbroken. Especially then.
Stay vulnerable, real, and honest. You will be closer to your friends than you ever dreamed possible. This is one of the best parts of your life as an FA patient.
Know your enemy. Learn everything you can about FA from doctors and the community of fellow FA patients so you can approach your lifelong battle against FA proactively. Friedreich’s ataxia is a cruelly progressive enemy that will creep into areas of your life you never expected. Partner with your doctors and members of the community for help.
Go to physical therapy to help strengthen your body. Take your vitamins and medication. Invest in devices that will prolong your independence and keep you safe. Maintain a healthy diet and get enough sleep when you can so that you are doing everything within your power to enable your body to fight against the disease.
Accept help humbly, graciously, and without beating yourself up for needing it. FA is not your fault. Accepting help is not admitting defeat, it’s the opposite — it’s your way of bravely continuing your life despite the challenges FA has put on your path.
You can depend on a countless number of genius devices, including a walker, which will be an emotional process and a hard adjustment. But you are stronger than you think. You will have to constantly redefine “independence” based on the progression of your symptoms, but you can do it, and it is worth it. Keep accepting help to fight for the life you want.
Your life isn’t over. You can still strive for joyful things. You are worthy and deserving of all of the wonderful things this world has to offer. FA will change logistics and timelines, but it doesn’t mean you have to give up on your dreams. You can still go on adventures, try new things, see new places, have babies, rescue animals, work, make new friends, and chase new dreams. There is so much joy in your future.
FA changes the how, but not the who, what, or where. FA doesn’t make all of the happy things in your life any less real or any less worthy of celebrating.
You are fearfully and wonderfully made. Because you know Psalm 139, as time goes by and your symptoms progress, you will become intimately aware of the “fearfully” made parts of you. It is easy to celebrate the wonderfully made parts, but if you vulnerably share the fearfully made ones — those affected by FA — God will use it to shine goodness, grace, patience, love, and joy to those around you.
Your weakness will become your strength. When you wake up every morning, make the difficult decision to embrace your reality for better or worse, including that which is fearful and wonderful, easy and hard, good and bad. You are exactly who God made you to be. If you keep trusting that and embracing your future, you will live a beautiful life.
In the years to come, you will laugh and cry harder, and love more deeply than you ever thought possible. Keep fighting. Your future is amazing. You are strong. You are worthy. You are capable. You can do it.
What is the first thing you want to do when a cure/treatment to FA is found? Plan a massive dance party and invite everyone who ever donated to Team Kendall, prayed for me, or encouraged me. Then I will take said cure and go PLAY with my kids! Jump on the trampoline, practice soccer and baseball, cannonball off of our waterfall, and more!
Interview by
Andrea Kiess