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.
The effects of Friedreich’s ataxia (FA) are vicious, relentless, widespread, and undeniable. FA uses my own body to slowly defeat me physically. The disease has taken away so much from me and given me a lot of hardship. I guess you could say that by many definitions, I am a victim of circumstance.
A victim mentality is when a person feels as though the world is against them. Even if something can be done to fix or improve their situation, they don’t take responsibility or action, as they feel that everything is beyond their control.
It’s easy to get swept up in a victim mentality with FA because its effects on my body are truly beyond my control. I can’t deny that I hate the disease with a vengeance, given all the pain, heartache, and suffering it has caused me and the rest of the FA community, but I refuse to let it defeat me mentally by going through life with the mindset of a victim.
There’s a common quote that states: “Holding on to anger is like drinking poison and expecting the other person to die.” No matter how much anger, hatred, or resentment I harbor against FA, my condition isn’t going to “die” or go away. Holding on to that negativity only harms me and prevents any productive, forward motion in combating FA.
I am not helpless
Thanks to my progressing FA symptoms, I am not nearly as independent as I wish I were. I’m not as able as I once was. I’m not as capable as other mothers in their mid-30s. But I am not helpless. There are things I can control to keep moving life in a positive direction.
For example, when incoordination tried to take away my ability to walk, I learned how to safely do it with a walker. When scoliosis became a constantly painful nuisance, I began a consistent course of adjustments and massages at physical therapy and used a shoulder wrap heating pad at night. When neuropathy painfully attacked my feet and legs, I began a regimen of medication and new footwear.
At every step, FA is trying to defeat me. I can’t control that. I can’t control what parts of my central nervous system it plans to attack and how it will affect me physically, but I can control how I respond. I can control whether or not I fall into a victim mentality.
I am a proactive planner, so I’ve had to redefine my expectations and overhaul my approach to life in ways I never anticipated. Being forced into a reactive position regarding my physical well-being has been, and will continue to be, a substantial struggle. Yet I remain determined to redefine and maintain what little independence I do have.
While I haven’t perfected the “ideal” mindset for handling FA, I can confidently eliminate the victim mindset from my options, as I know it won’t serve me well.
For a couple of years now, Galatians 6:9 has been my theme for battling FA: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”
Yes, I am a victim of circumstance, but living in that makes me so weary that I want to give up. And I refuse to give FA that victory.
Comments