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.
As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid.
I am lucky that I lived a wonderfully carefree and active childhood and young adult life before my symptoms progressed to the point where I needed a walker. I feel thankful for this every single day. But the flip side of that coin is that I truly know what I am missing out on.
I was a newlywed, working professional, recreational sand volleyball teammate, workout partner, and runner. I was incredibly active and loved every bit of it. Then, my body started changing. I was less coordinated, less energetic, and, basically, less able. After a medical journey resulting in an FA diagnosis, my life changed.
I stayed as active as my symptoms would allow, but the damage was being done, regardless of my efforts. I was becoming less able. I was progressively losing my identity and being forced into a new life that terrified me.
Despite the uncertainty of my future, my husband and I decided to bring joy into our world by growing our family. When we welcomed our son, Brooks, I was still fairly “normal.” I couldn’t run and I preferred holding on to a rail or a person when going downstairs, but I was pretty able. I could walk around the house holding my son safely. I could take him into the backyard to load him into the swing without help. The beginning of my motherhood journey was minimally affected by FA.
Two and a half years later, we welcomed our daughter, Collins. By then, I was less able. I could carry Collins for a few steps here and there, when necessary, but it was not a safe choice. I needed more assistance during the infant phase with Collins than I did with Brooks.
I think that one of the hardest parts of this reality was that I knew better. I knew what it felt like to be a more able-bodied mom. Of course, my children didn’t know any different because, for better or worse, I am the only mom they’ve had.
As time went on and my babies became toddlers and then little kids, I progressively became less able as they became more able. I lost independence while they simultaneously gained theirs.
Collins was only 1.5 years old when I started using a walker full time. Because she was so young, she doesn’t have any real memories of me not needing assistance. Brooks, on the other hand, was 4, so he remembers. They both graciously accept my limitations, but I know that Brooks pines for my abilities almost as desperately as I do.
With my walker, and a lot of help from my husband, parents, and friends, I can play a pretty active role in my kids’ lives. I am still ambulatory. I’m so thankful that I am still able to walk, even if it’s assisted, because I know that both of my kids are developing compassionate, helpful, and observant hearts while building memories of me being an active participant in their lives.
My kids will always know how hard I fought to keep walking, even on the days when, years from now, they get frustrated that their mom is in a wheelchair. Together, we will process our feelings about the mobility aids I depend on for independence as we digest the realities of my progressing disease.
So, for now, looking at it from my kids’ perspective, I will appreciate my walker for what it is — a mobility aid. A tool that helps me build memories, build character, and stay safe. And I need to keep reminding myself not to resent it for what it isn’t — my enemy. My walker is the physical embodiment of help, not of harm. It’s easy to channel the anger I feel toward my disability at my walker instead, but the reality is, mobility aids are just that: devices that aid mobility. My walker fills in the gaps where my body falls short.