Mobility isn’t black & white
Mae’s story
Mobility is different for everyone. It’s personal and it comes in all shapes and colors.
Through our collaboration with Neo Walk, we had the chance to get to know Mae who showed us how mobility isn’t just black and white.
Meet Mae
Mae’s journey reflects resilience and reinvention. At 45, this former Brazilian-born German national powerlifting champion and mother of two teens has embraced new paths since her health led her to step away from competitive lifting.
Living with Ehlers-Danlos Syndrome since birth, Mae embraced the use of mobility aids once she experienced the renewed independence that they bring. Having lost her passion for powerlifting, Mae reconnected with her creative side in art. And it reminds her daily of just how much spark and passion she still has – how much life there is still to live, and how much she has to give to the world.
“I thought I wasn’t “disabled enough”, and that if I could push past the pain, fatigue, and other symptoms, no matter how debilitating, that it meant I could, and consequently should, do it without aids.”
Time for extra support
I was born with a relatively rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. Because connective tissue is quite literally all over our bodies, EDS affects our whole bodies, including internal organs. Personally, I’ve dealt with chronic pain and fatigue, as well as frequent injuries and tons of other symptoms since I was tiny.
As I grew up, the severity and frequency of my symptoms continued to slowly intensify, and brand new issues started to develop. Still, having always heard that there was nothing wrong with me that could justify my pain and symptoms, that it was all “in my head”, or that it was just attention-seeking behavior all through my childhood and teens, I started assuming that all bodies were like mine but everyone else just handled it better, and so I learned to tolerate pain and discomfort.
In my 20s and 30s, I was often told that the pain came from something I was doing (or not doing) too much (or too little) of, and at 35 I started strength training in an effort to mitigate some of my worsening joint pain. While I became stronger and fitter, the pain never really went away. But I was now invested in a new hobby, the first one done “socially” since the birth of my kids, and my issues started being assumed to be coming solely from what I was doing. I started thinking that I had to just be doing something wrong, and if I worked a little harder or smarter, I’d crack that nut.
Three years into it, I did my first competition, and one year after that, at 38, I won my first national gold medal, broke my first national record, and qualified to join the German Powerlifting National Team, which I did. Over the next two years, I would become national champion twice more, break several more national records, and get to compete in two European and one World Championships. By mid-2019, as I turned 40, I was one of the strongest drug-tested women in Germany, competing against women 10-15 years younger than me.
What almost no one knew, was just how big a toll it all took on me. No one saw how often I had to hold back tears during training from the pain and sheer fatigue, and no one knew how many times I did cry. No one ever knew just how much mental work it took me to finish my training sessions. By the end of 2019, it became clear that pushing was no longer an option, as my body started to just fall apart.
“As it became clear that my disability and illness weren’t going anywhere, I started slowly building a veritable fleet of mobility aids to cover all of my needs, as with chronic illness they can fluctuate quite a bit.”
I kept on desperately attempting a comeback for another 3 whole years, but it eventually became clear that the issue was not what I was doing as much as it was my body: I lifted, biked, tracked my food and nutrient intake, hydrated, took supplements, and did 30 mins of yoga at home most evenings, and yet things kept going downhill with increased pain and symptoms. It wasn’t long until I started sometimes needing weeks to recover from workouts, and I eventually made the switch to start putting my efforts into educating myself and looking for help to figure out what was wrong with me.
Still, I didn’t start using mobility aids until spring 2023. My husband and I took our sons to Amsterdam for a few days during spring break. I had been having a lot of extra issues with my left knee and was struggling to walk through the pain, so I bought myself a little foldable cane we spotted at a second-hand store.
That was it, I was hooked! Although I got the cane for my knee, I quickly realized there were a lot more benefits to it than anticipated. My back hurt a lot less because I could use the cane to help me stabilize my trunk. My balance was better having a third point of contact, and that made me feel much safer. After that, as it became clear that my disability and illness weren’t going anywhere, I started slowly building a veritable fleet of mobility aids to cover all of my needs, as with chronic illness they can fluctuate quite a bit.
So what led me to use mobility aids was really just my chronic illness(es) progressing and taking their course. I was actually one of those people who really held on to getting their first mobility aid. I thought I wasn’t “disabled enough”, and that if I could push past the pain, fatigue, and other symptoms, no matter how debilitating, that it meant I could, and consequently should, do it without aids.
Boy, oh, boy was I wrong! All that mentality did was put me through unnecessary pain, especially because as time went on, the more I pushed through, the worse things got and I slowly started becoming housebound. Eventually, it became clear that if I wanted to have any chance to take part in the world, including my children’s lives outside of our home, I would need some help.
“I don’t love my reasons to need mobility aids, but I LOVE my mobility aids! They give me freedom, independence, and access to the world.”
Feeling empowered
I think my first time using every single one of the aids was pretty incredible, just because each level of mobility aids opens up more possibilities for less loss and more enjoyment in general, but my very first time using a cane was the single most impactful experience of them all.
We were in The Netherlands with our boys for spring break and I was struggling pretty hard with high levels of pain. I was on the fence about getting a collapsible cane for the trip, which I ended up doing at a second-hand store in Amsterdam. That trip changed everything! Not only could I do more, I could ENJOY more because I was dealing with a lot less pain.
That’s when I realized just how much unnecessary pain I’d been in! Once I saw it, there was just no unseeing it, just as there was no unseeing how much better everything was just because I had a 7 Euros little cane with me. It gave me a lot of hope, and also made me realize that I do indeed need mobility aids and that mobility aids and friends, not foes!
“I think my first time using every single one of aids was pretty incredible, just because each level of mobility aids opens up more possibilities for less loss and more enjoyment in general.”
Mobility is individual – so is your need for a mobility aid
It’s actually quite normal for me to switch between aids more than once on the same day. I used to think I should have only one mobility aid to cover all of my needs, but my disability really doesn’t work like that.
Now I’m very fortunate to have a fleet of mobility aids to handle all of my needs regardless of how they may fluctuate: walking sticks for indoor use and walking short distances, a rollator for the added safety of bringing my own seat when out on days (and distances) that I feel I can handle, a powerchair for longer outings/walks (as well as high symptoms days), and an electric bicycle that I can ride for both transportation and fun without causing pain or fatigue.
Which aid I’ll reach for depends on a number of things, but it mostly hinges on 3 factors:
- Pain, fatigue, and symptom levels
- What am I doing and where am I going
- How much energy I might need to conserve for the rest of the day or for the coming days
For example, some days I can make a run to the store with just my rollator, others I have to take my powerchair unless I want to have to spend the following three days sick in bed just for going to get some milk. It’s a lot of winging it depending on the day, sometimes even depending on the hour!
“As dramatic as it may sound to non-disabled people, my mobility aids are a literal lifeline to me, that helps me keep going in many, many more ways than one.”
Keep moving
My illness robbed me of Powerlifting, which I was incredibly passionate about. I was never really healthy and lifting weights came at a great cost. And while I used to cry from pain and fatigue during training a lot more than I care to admit, I also never expected to have to abandon it.
In the vacuum of powerlifting, I rediscovered my love for art, which I had studied in college but then completely abandoned over the years as I focused solely on raising my children. Reconnecting with that side of myself has been absolutely instrumental in processing the worsening of my disabilities and the loss that has come with it.
I could give you one thousand practical examples, like the very simple act of being able to go to an art store to pick materials, but the truth is that they enable me to keep pursuing my passions, and life in general, because of the incredibly positive impact they have on my mental health.
I suffer from complex PTSD, and losing the thing I was most passionate about along with so many friends, all on top of having to deal with the fact that I am going to be sick for the rest of my life, took an incredible toll on my already frail and frazzled mental health, especially as I became housebound due to my EDS. As dramatic as it may sound to non-disabled people, my mobility aids are a literal lifeline to me, that helps me keep going in many, many more ways than one.