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) changed every aspect of me — the emotional, the physical, the spiritual, and even my personality. Pre-FA Kendall was very different from FA Kendall.
I can categorize my friends into those who knew me before my diagnosis and those who met me after. I am blessed to have great friends in both categories, and I lean on each group of friends for different reasons during different phases of life with FA.
Those who knew me before my diagnosis in 2013 knew an outgoing, confident, optimistic, energetic, competitive, funny, carefree, and athletic young lady. I loved life and lived it to the fullest. I was a cheerleader, competitive swimmer, volleyball player, and track and field athlete in high school. I did recreational racquetball and running in college, and played coed sand volleyball and softball after college. I was the bubbly, larger-than-life friend.
Those who met me after my diagnosis know a different Kendall. I still love life and live it to the fullest — it just looks a lot different. FA Kendall is more introverted, deep-thinking, witty, kind, sincere, intentional, and passionate. Progressing FA symptoms mean I’m always adapting to my degenerating abilities so I can be the best mom, daughter, wife, friend, and sister I can be. I nurture important friendships and strive to make the world a better place for everyone, not just for me.
When I see people who knew me pre-FA, I can’t help but wonder what they think about me now. What do they remember about the old me? What is their opinion of my eight years of FA progression? Do they view me with pity? Which Kendall do they like better?
I’m often in a weird self-conscious state. I realize how different I am now. And while part of my personality change is the result of maturing and growing up, FA has also changed me to my core. I can quickly make peace with others’ reactions to my physical changes because I have to make peace with these changes daily.
However, I am uncomfortably aware of my personality changes. I feel pressure to be the old me because I feel like that is what others expect: the same old Kendall, just with a walker.
Friends who knew me before my diagnosis and have walked the journey with me are invaluable. I am so thankful for their steadfastness, loyalty, and hope. I depend on their grace as I learn how to live this new life as a disabled person. I rely on their reminders about who I was, how far I’ve come, and how far I can still go. They inspire me to remember the pre-FA Kendall, and that helps me shape my approach to the condition.
Since my diagnosis, I have made some lifelong friendships that I deeply cherish. I find peace in the acceptance that comes with these relationships. They don’t know two different versions of me, and they like me for who I am now.
When I talk about my youth or my grade school and college days to those that have only known FA Kendall, I often feel like the washed-up high school quarterback bragging, “You should have seen me in my prime.” I wish I could be that Kendall again because I think that they would like me so much more. I have to remind myself how lucky I am to have people that genuinely like me for who I am now, even if I don’t always like FA Kendall.
I am proud of both versions of myself. I am thankful for both categories of friends and for the roles that they have played in my life. I aspire to keep evolving while staying true to the common thread of both versions of me — loving life and living it to the fullest.