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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
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 become 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.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I may not like my body, but I respect it.
I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that all the time. We all have something. You might wish you were taller, that your nose was different, that you were in better shape, that your hair was different. Some of the problems can be fixed with hard work, some can be fixed by a surgeon or a visit to a salon, and some you just have to accept and move on.
When I say “I hate my body,” it’s not meant in a vain way or a fishing-for-compliments way. What I mean is, “I hate my disease.” It can be exhausting to have Friedreich’s ataxia (FA). And it is really hard to have your body slowly fail you because of your very DNA. I often wish that things could just be easy, even for a single day.
Walking across the room to pick up a remote or grab a glass of water might be nothing to most people. But for me, it is physically difficult and mentally taxing. I have to decide if it’s worth it, convince myself that I have enough energy to complete the task safely, and then I have to make my body cooperate.
Every step I take has to be thought about. I don’t do anything mindlessly. Every physical act by my large muscle groups is a conscious effort. My body is working overtime just to function in a “normal” capacity. What I mean by normal is completing daily tasks (taking care of my kids, running errands, housekeeping, and maintaining a social life when my schedule allows).
It may not seem like I’m asking a lot of my body. I’m not pushing myself to Olympic perfection in gymnastics. I’m not training every day to compete in an Iron Man competition. I’m not standing in an operating room performing intricate 15-hour surgeries. But I am pushing my body beyond its comfort zone. I’m pushing my body to fight against its destiny to let me function “normally.”
I may not like my body, but I respect how hard it works at my command. I ask a lot of a body that is battling FA. Every minute of every day, I am fighting against my body’s predisposition. I push my body. I am going against my physical destiny. And I really respect my body for fighting that hard for me.
It is hard to be mad at my body when it has truly given me so much. I’ve seen beautiful things in exciting places. I’ve tasted and cooked delicious food. I got to play sports all through high school and dance at my wedding. And most importantly, my body gave me two absolutely beautiful, perfect, and healthy children.
I definitely have a love-hate relationship with my body. Yes, my body fails me often because of FA. Since 2013, there hasn’t been a single day in which I haven’t thought or said, “I wish that I didn’t have FA.” I wish that things came naturally to me, that it was easy to be me. I wish that my body didn’t have to work so hard. But I am really proud of my body, and I respect how hard it does work. I am thankful that I can still push myself.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me.
It is a factor in almost all of my decisions, both big and small. I have to think about my limitations and how destinations will affect me. Are there stairs? Is the ground bumpy and holey? Can I use a shopping cart or should I bring my walker? Should I just put it off until someone can go with me?
I have always been a planner, but I was a spontaneous planner. I know that sounds like an oxymoron. Let me explain: I was spontaneous but I was good at quickly thinking ahead to accommodate my spontaneity. I quickly executed plans to make things run smoothly. And everything generally worked out just fine.
Then FA came into the picture. I lost my confidence along with my spontaneous gumption and my planning mojo. I found my anxiety and my introverted tendencies. I was scared of looking or feeling “disabled,” so I just didn’t say “yes” to things. I was self-conscious that people were expecting happy, carefree Kendall and would be disappointed when “I’m just having a rough day” Kendall showed up instead.
So, I let FA rule my life for a while. I let it win. I was in a dark season.
Then, I stopped my pity party and realized that I could still DO so much, so I put FA in a little manageable corner and got on with life. Yes, it was always in the room, but it was just there. It wasn’t dominating my life anymore. It wasn’t winning.
Then FA would demand acknowledgment. I would fall. I would just be having a bad week in which I was physically and emotionally drained. FA would consume my attention again. I would have to slow down and focus on my condition again.
I realized that I couldn’t segment FA out of my life. It is a factor in all aspects. It affects how I mother my children, how I do girls’ night with my friends, how I travel, how I sleep, how long it takes to get dressed. So, I am getting back to my spontaneous planner roots. I am saying “Yes!” I am living my life, but I am also making logical steps to accommodate FA.
There are times when FA is a more consuming part of my life, like when I travel across the country once a month for a clinical trial or deal with a broken ankle from a particularly bad fall. But I surround myself with enough positive distractions and obligations that FA is just part of my life — not the entire thing.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong.
Oxford Dictionary’s definition of tired is: “in need of sleep or rest; weary.” When you’re tired, a good night’s sleep, a cup of coffee, and a reinvigorating activity (girls’ lunch, exercise, spa trip, etc.) can fix you right up.
Fatigue is so much more. According to Farlex’s Free Dictionary, fatigue is “characterized by a profound lack of energy, feelings of muscle weakness, and slowed movements or central nervous system reactions. Fatigue can also trigger serious mental exhaustion.”
When I am fatigued, all of my symptoms worsen. I trip and fall more, I slur my words more, and I flat out don’t have the energy to function at my normal capacity. Even on a good day, navigating life with FA takes so much mental and physical work. For every step I take, I have to think about where my foot will land.
Usually when a person tired, a restful day or two can snap him or her out of the funk. But my fatigue can’t be slept off, and it exhausts both body and spirit. My fatigue can drive me to dark places. In its midst, my disease’s toll is emphasized. As a mom, I don’t have the luxury of “calling in sick.”
When my fatigue gets the best of me, I often find myself saying, “I’m just so sick of being me.” I want to be someone healthy and “normal”; someone who can slam a cup of coffee and “fake it till I make it” through my day. But I’m just not that person. My fatigue can’t be slept or caffeinated away. It seeps into my very cells and drains me but I must power through while my own genes fight against me every step of the way.
My fatigue is a vicious cycle: I get exhausted, so I get sloppy, which makes things harder, which makes me even more exhausted. I don’t quite know how to navigate this slippery slope yet. I need to find a way to stay on top of my fatigue and fight it before it starts by keeping up my exercise routine, eating healthily, and prioritizing sleep. If I can keep my fatigue in check, I can find the strength to manage other symptoms.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link
, or just keep scrolling below.
In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening.
The way I see it, I could react in two ways: fight FA or just let FA win. I’m fighting. Seeing as there are virtually no available treatments for my symptoms of poor balance, decreasing dexterity, fatigue, and slurred speech, I had to get creative. Enter physical therapy.
At physical therapy, we focus on different muscle groups and types of exercises every week. Sometimes I do strength training to equip my muscles to safely and efficiently do daily tasks. Other times, we focus on my core to help keep my center more grounded, strong, and stable. I also do walking, obstacle courses, and functional training to help reinforce and teach my muscles safe ways to navigate my life. We even practice different sports so I can find adaptive and safe ways to play with my kids.
For me, physical therapy is frustrating and rewarding, all at the same time. I get frustrated that I have to hold onto a wall or use TRX bands to do squats with just my body weight, when 10 years ago, I was regularly doing three sets of 10 squats with a 185-pound bar. But I remind myself that every squat I’m doing now is making me that much stronger. I can push off needing a walking aid for a little bit longer if I just keep pushing myself.
Physical therapy is a good way to strengthen muscles that I use every day that aren’t worked by just completing everyday tasks. What I mean is: Yes, my legs are benefiting when I walk around and when I get on and off the floor to play with my kids, but it’s not the same as intensive exercise. Staying mobile and doing everyday tasks is SO important, but so is intentionally exercising those muscle groups. Think of it as being proactive versus reactive.
Physical therapy is also mentally taxing. In many ways, it feels great. I am proactively strengthening my body, fighting my disease progression, and holding onto my mobility. That motivates me and energizes me to make it through my sessions. Plus, endorphins!
But physical therapy is also mentally trying. I resent the reason that I am there in the first place. It is disheartening to perform so poorly at tasks that I used to do for fun. It is exhausting trying to keep up and finding adaptive ways to do things “normal” people do every single day without a second thought.
I would much rather be slamming tractor tires with a sledgehammer at CrossFit than trying to simply sit on a yoga ball for 30 seconds without falling over. I would rather be running with a jogging stroller around Town Lake than practicing standing on one foot without falling over. I would rather be laughing and dancing ridiculously with my girlfriends at Zumba than trying to make it through a set of overhead presses without dropping a weight on my head.
I know that physical therapy is worth it in the end. It helps me SAFELY continue going about my life. I have never finished a session and thought, “Well, that was a bad decision.” I like pushing myself and trying to better myself. It might look different than what I thought working out at 30 years old would look, but at least it’s something. I have to keep trying to stay mobile and strong while the scientists try to find a cure. That’s my job.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
For some time now, I’ve needed to use a walker (or another mobility aid). My physical therapist, Kelli, has been encouraging me to use my rollator around the house. It is inconvenient because I have a son who’s almost 4 years old, plus a 1-year-old daughter. My son loves when I use my walker because he rides on the seat like it’s a fun rolling chair ride. My daughter, however, can’t understand that if she wiggles, she will fall off and get hurt. So I can’t use the walker with her.
My kids are just one of the many excuses I use to avoid the walker. I also don’t want to “look disabled,” I don’t want to become dependent on a device to get around, and I don’t want to admit to myself that my disease has progressed. Kelli suggested looking at it as fall prevention, instead of a walking aid. She said, “If you have a big fall, it’s likely going to be when you aren’t running around with the kids. It’s going to be when you’re tired. If you use a walker then, it will keep you safer.” How right she was.
On Memorial Day, my family and I went over for poolside pizza by my parents’ backyard pool. We had a fabulous day of fun in the sun! After lunch, my husband Kyle and my son dropped my daughter and me off at the house while they ran up to the local snow cone place for a summer treat. I put my daughter down for a nap and went to take a shower. I was walking from my bedroom to my bathroom when I tripped. It was one of those glorious, typical FA, flailing falls. I felt a snap in my ankle on my way down.
I quickly assessed my injuries. My head didn’t hit anything. My neck and back could move without pain. My arms and wrists (which normally take the brunt of my impact in my failed attempts to brace myself) were fine. I was scared to look at my ankles.
I looked down, but I couldn’t see my left foot. It was dangling off to the outside of my leg. All I saw was my leg bone, ending abruptly where my foot should start. I was in complete shock. I somehow got to my phone which was charging on my nightstand about 4 feet away. I called Kyle and tried to remain as calm as possible (I knew he would have me on Bluetooth and that my son would hear me). I told him that I’d fallen and broken my ankle really badly. I told him I could see my leg bone. He assured me he was rushing home.
Next, I called my parents. I knew they would need to handle the kids while Kyle and I went to the hospital. Thankfully they live five minutes away. As I was lying on the ground, waiting for my saviors to arrive, I snapped a few pictures of my broken ankle. I don’t know why I did that. As I said, I was in shock.
Surprisingly, it didn’t really hurt that bad. At first. My parents and Kyle arrived within seconds of each other. My dad swooped my son up and took him over to their house while my mom and Kyle rushed inside. We agreed we needed ambulance assistance. While Kyle called 911, the pain started.
Kyle scrambled (as carefully as possible) to put some clothes on me before the ambulance arrived. When it came, the medical crew assessed my injuries and started IV pain medication immediately. They put a foam fit-to-form splint around my disfigured foot to keep it immobile during transport. That seven-minute ride was the longest seven minutes of my life.
I was so drugged up and in such shock that I don’t remember much. Apparently, I had X-rays and doctors sedated me to reset the break. I awoke, in a temporary cast, to Kyle’s shell-shocked face. The doctors told me what I was expecting — I would need major surgery.
I went home, and we began researching orthopedic surgeons. In the morning we called offices as soon as they’d opened. We got in with the hands-down best orthopedic surgeon in Austin, Dr. Kelly Cunningham, for later that afternoon. He usually does surgeries on Fridays, but he didn’t want to make me wait that long. He scheduled me for 6 a.m. After the most painful, miserable night of my life, I was on my way to go under the knife for the first time.
My ankle two titanium plates and 13 screws later.
Two titanium plates and 13 screws later, my ankle is rebuilt — I’m on the road to recovery.
Friedreich’s ataxia caused this whole ordeal. But my accident could have been prevented if I hadn’t been so stubborn and refused help. Moral of the story: listen to your body. And your physical therapist. They know more than you do.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by followingthis link, or just keep scrolling below.
Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival.
Friedreich’s ataxia (FA) patients have to choose to fight every single day. We have to fight against our very genes, which are causing our bodies to fail. We have to fight to keep moving, to remain as independent as possible, to keep living the life we want in spite of physical limitations.
When diagnosed in 2013, this fight-or-flight decision faced me. The very first words out of my husband’s mouth were, “We can fight this.” I immediately snapped back at him, “Didn’t you hear what the doctor just said? This is a life-shortening disease for which there is no cure or treatment, how am I supposed to FIGHT it? I can’t beat this!”
My friends and family quickly learned not to use that phrasing around me. They let me mourn this unbeatable battle I was facing. I was a definite flight risk. I wanted to avoid this. I didn’t want FA. I didn’t want to fight for the rest of my life. I wanted to fly away from FA into an easy, healthy life. However, we learned more about FA. And I realized that I needed to face it head on — I needed to fight.
I have since defined what fighting means for me in my battle against FA. My version of fighting is doing whatever I can to resist FA. I am fighting to slow its progression. I don’t give FA the power it wants and demands. I refuse to take whatever FA has to offer without fighting back.
To fight, I have daily habits. I start each day by accepting that I have FA and the limitations that come with it. And I DECIDE to rise above, remain positive, and keep going forward. I raise awareness. I fundraise. I exercise. I go to physical therapy. I try to be the best mother I can be for my kids. I try to be the best wife, daughter, sister, friend, and patient that I can be every day. I laugh, I cry, I pray, and I manage the best I can. Fighting FA can be exhausting. But if I don’t fight, who will? There really is no other choice but to fight.
My pastor, Dr. Dave Haney, recently shared this beautiful poem that he wrote, which has become my new mantra:
“PRESS ON” There are times in life that we all must face As we struggle and strain to run in the race We scratch and we claw to fight for success But we fall and we fail to find what is best When troubles surround us and our life is off track The low tide just means High tide’s coming back For in times just like these in the hours before dawn That we remember the sunrise and keep pressing on Anger, anxiety, remorse and regret Belong long in the past, so forgive and forget. Don’t throw in the towel, don’t drop out of the race The victory is won, and it’s ours by His grace Press on toward the mark, toward the prize, toward the goal Set your face, Fix your gaze, get up when you fall When dark times come and hard times we face Press In and Press On and finish the race For this is our call, to press on toward the mark To never give up and to Press In to The Dark
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a news story about a beautiful young lady with FA who was training and fundraising for a bike ride.
My family clung to this like a life raft. There were more people like me out there! And they are DOING SOMETHING to fight this disease. We immediately knew we had to get involved.
I got in touch with the phenomenal folks at the Friedreich’s Ataxia Research Alliance (FARA), and they told us all about rideATAXIA. rideATAXIA is a nationwide program of bike rides that welcomes people of all abilities to ride and raise funds for FARA’s mission to treat and cure FA through research. It was a huge relief to channel all of our preoccupation, energy, and fears into a productive event. We could actually do something proactive, instead of just sitting and dreading FA taking over my life.
I was beyond blessed to have an incredible network asking, “What can I do to help?” The ride was a great answer. People could ride with me, donate, or just spread the word. We had a rallying point. I knew that rideATAXIA was perfect because I wanted to do something WITH my friends and family, not just sit and watch. And this was something I could actively participate in with a recumbent trike.
My first rideATAXIA in 2014 was life-changing. I fundraised so hard and taught everyone I knew everything that I knew about FA. I was so determined to make a difference. About four weeks before the ride, I found out that I was pregnant with my son, so I was fighting for a future free of FA with even more passion. “Team Kendall” came out on top as the highest fundraising team that year!
The atmosphere at rideATAXIA is electric — it’s like a giant pep rally. Everyone there is just as desperate for a cure as you are. That brings about an indescribable bond. It is an opportunity to meet with fellow patients and build camaraderie in a supportive environment.
rideATAXIA is a productive avenue to channel my energy when FA is on my mind. It gives me such hope that there is a huge, nationwide effort to raise awareness and funds to help find a cure for FA. There are rides every few months all across the United States, so there is always some way to get involved.
Last, but certainly not least, the support from my friends and family has absolutely changed my life. I am so humbled, and my heart is so full from all the love shown to me. Be it through generous donations, showing up and riding, or sharing my story, it all just warms my heart. So far, I have raised over $145,000. I hope that all of my supporters, riders, and donors know that they are changing my life and investing in my future. There is no greater gift than that.
Kyle Bryant, a fellow FA patient and rideATAXIA founder, said it best: “When I’m cycling, I imagine my trike is hooked up to a huge research machine. As long as I keep pedaling, the research keeps moving forward. Thank you for helping us power that research ‘machine.'”
My team and I are about to embark on our fifth annual ride. As much as I love rideATAXIA, I hope that this 2018 ride is my last. Because I hope that this is the year we CURE FA and won’t need to fundraise for scientific research anymore! Here’s hoping …
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by followingthis link, or just keep scrolling below.
As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease.
When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger years, I never imagined that I had a genetic disease lying in wait that would take away my ability to walk. But once I began developing symptoms, it was strangely relieving to put a name to it. I had a feeling of solemn (albeit reluctant) acceptance.
Being diagnosed also gave me a sense of purpose. There was a whole community of people like me doing life with FA. We all needed to band together to fight for a better future free of this disease. I found Friedreich’s Ataxia Research Alliance (FARA) and put all of my energy into Team Kendall in support of FARA. So far, Team Kendall has raised over $139,000 for FARA. I had a feeling of determined optimism.
Then the novelty wore off. My adrenaline slowed. My symptoms progressed, and I felt discouraged that I still had to fight this disease. I came to realize that I thought we would for sure cure this disease before it seriously affected me. I realized that I hadn’t fully accepted my new reality. I really DO have this horrible progressive disease and I really am going to progress, no matter how much I fundraise or how much awareness I spread. I am fighting against a relentless clock. That realization brought about feelings of anger, hopelessness, and bitterness.
I knew from personal experience that wallowing in that sad place wouldn’t accomplish anything, so I began physical therapy. It is something proactive that I could focus on to help improve my day-to-day. Even though I know physical therapy won’t stop my progression, it can strengthen my muscles and train my body to cope in a way that helps me function safely. Plus, I just had my second baby, so the motivation to work out, shed some baby weight, and get back in shape was even stronger! I felt a renewed sense of fight.
Yet, despite my fundraising, awareness raising, physical therapy, optimism and determination, my flawed genetics are stronger. FA is winning — at least, physically. I am relying on shopping carts, strollers, friends, and family more often than not. So, I got a walker to start using part-time. This has brought so many emotions that are still so fresh that I can’t yet define them. I feel sad that this is a reality, angry that I have to take this step (tactless pun not intended), discouraged that I am not making a tangible difference yet, and hopeful that the walker can help. And I feel abashed that I am this emotional about something that, in the grand scheme of things, isn’t THAT big of a deal. I guess you could define my emotions about a walker as “conflicted” for now.
Progressing through FA is an emotional roller coaster. But I am doing my best to enjoy the ride and face whatever each new hill and turn brings my way. FA might have my body, but it doesn’t have my heart, mind, and soul.
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I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by followingthis link, or just keep scrolling below.
When I met my husband Kyle in high school at the age of 16, everything was perfect. We were perfect. We were madly in love with limitless possibilities ahead of us. The world was our oyster and we couldn’t wait to “grow up” and start living.
We got engaged in college and married shortly after graduating. A few years into our marriage, we began to notice that my balance and coordination was deteriorating. After many, many doctor’s visits and tests, I was diagnosed with Friedreich’s ataxia (FA).
Talk about a gut punch. I will lose the ability to walk? What? That wasn’t the plan. That wasn’t what I pictured for my marriage. I was so scared that this disease would turn my husband into my caretaker.
I didn’t want FA to define our marriage, so we try to go about our lives and normally as possible. We don’t let FA dictate our course. However, it is always a factor. FA is like the awkward, unwelcome third wheel in our relationship. And as much as we try not to give FA power, it influences a lot.
We had to buy a one-story house because I can’t do stairs. A lot of the traveling we had in mind would be extremely difficult, therefore it is no longer appealing. Adventure trips like skiing and hiking are way less enticing. FA just makes everything so complicated. Not impossible, just complicated.
Even small things like deciding what restaurant to go to (how much walking is involved?), which seat to reserve for shows and movies (what is the stair situation?), or what to do in the evenings (how much walking have I done today; what do I feel up to?) are affected.
My mind revolves around FA. It has crept its way into every aspect of my life. It is so easy to let it consume my everything, to be my sole focus. But that is neither healthy nor productive. I had a life before FA. I need to keep striving for that life, even with FA.
There are two people in my marriage — it isn’t just about FA and me. So, I make a conscious effort to not make it my daily focus. Our relationship is my focus. FA is just added to the list of things that affect and influence our marriage, just like our children, work, friends, church, hobbies, in-laws, etc. We are not defined by FA.
Getting diagnosed with FA rocked our world. We are still adapting and adjusting. And we will continue to do so as my disease progresses. I am just eternally grateful to have such a fantastic partner to navigate this most unexpected obstacle with.
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