Preparing to Travel with Disabilities
Taking a break with my walker in the woods, 2023 - Photo credit: Sam Butler
This trip was originally supposed to happen a few years back. We’d planned on going once our eldest got to high school, but when the pandemic hit during their freshman year it changed our plans in a multitude of ways. I have been living with chronic illness for a long time, but my relationship to it changed drastically in 2020. I first began having problems when I was 13. Eventually I was diagnosed with Fibromyalgia at 18, and then Ehlers-Danlos Syndrome at 20. These work in tandem, EDS making my ligaments really loose and able to sprain and strain easily, requiring good muscle tone to prevent injury. And then Fibro affecting my muscles, making it difficult to heal or increase tone, leading to pain and chronic tiredness.
I have mostly chosen to hide these illnesses and to manage them on my own. I have taken years of classes and advice from doctors on how to work with my body and have mostly been able to manage the last few decades without medicine and without people knowing. Simply not speaking about my pain or mentioning bedrest. Pushing through at points I shouldn’t just so people don’t see pain on my face. It has protected me in some ways, but as time goes on it has proven to be damaging.
When I have told people it becomes the center of conversation, I hate the looks of pity, the unprovoked prayers, and people constantly offering a new vitamin or exercise to try. The truth is that I’m never going to get better, it is only about management. I can work extremely hard and it will improve my quality of life by a fraction, but it will never go away. People have a hard time accepting this, they don’t know what to say when it doesn’t ‘get better’. Shortly before the pandemic started I could feel myself beginning to slip, having more bad days, and a harder time hiding when I did. I was walking constantly to just hold myself together, but I knew it was coming, pushing through was never sustainable and I was just winding myself tighter and tighter at that point, buying a little time.
I’ve always known pushing through would have an expiration date, and once the pandemic started I began to let down and really acknowledge the pain for the first time in my life. I’ve learned to be good at dissociating from it, but it turns out pain is actually a signal from your body that you’re not supposed to ignore. I used to just push it to the side and continue to work. I used to keep moving until Russell would notice I was almost in collapse and tell me to sit down to rest, even when I work with the stove I have to be careful because I don’t always feel the heat of a pan right away and often burn myself. I have been trained to ignore myself to push through everything, and pausing to experience it all of a sudden is really hard. It’s exhausting, defeating, and painful. I am rebuilding but I have had to learn how to use my body in different ways. To support it and give it rest, to allow it a chance to heal. I can appear completely functional for short periods, but I get exhausted really easily, I can be great for half a block walk and then turn the corner and barely be able to make it.
Support from Mobility Aides
The start of my mobility aide journey, walking sticks in 2020
I’ve learned to accept mobility aids, which drastically improved my quality of life, but come with a stigma and attention from onlookers that is difficult to get past. I first got used to walking sticks, and then when hikes and long walks were too much a cane or walker, I’ve now moved on to arm crutches, or a wheelchair. They were hard to get used to, both mentally and physically, but extend my stamina immensly so I can be out for more than a quick trip, and they prevent a lot of injury, especially when I am tired and get extra wobbly and very accident prone.
A Little More to Handle
On top of the physical concerns, a few years before the pandemic I was also given an agoraphobia diagnosis. I didn’t really see or understand what the doctors saw at that point, but the isolation of the pandemic has certainly made it clear. I’m beginning to see the earlier signs now, there were times early in my marriage where I would be grocery shopping and all of a sudden be unable to move, just stuck in a panic attack until my spouse drove over to walk me out of the building. Times where even when there was something I was desperate to do I couldn’t convince myself to go. I eventually would, but it would be through tears and only by force of will just to get in there and then I would just dissociate to survive.
I have lived my life over-riding anything I’m feeling, always pushing past myself. Once I pulled back and started to regulate my nervous system, I lost all tolerance for pushing through the overstimulation. It’s horribly embarrassing. I’m an incredibly strong person and it feels like such a small problem. But pushing through it is what was damaging, so now I am in a time of quiet, and regulation, and listening to my body. And I am healing! I can feel it and see the results. But I’ve now gone years not really leaving the house alone. Even when people are with me, I get overwhelmed really easily and can shut down even at a small store or someone’s house. My panic attacks and breakdowns are so unpredictable that I usually just won’t risk going out to something if I’m not sure I can manage it. It’s just too difficult to explain, people haven’t been kind when I’ve tried. It’s easier just to make an excuse.
Thankful for my arm crutches for our recent trip
The universe made it clear the last few years that my place for now is to seek rest and solitude. It has been a difficult journey, learning to balance my body and mind, and I know it’s not done yet – this trip made that clear. This was such a big goal to work towards and it feels incredible to have behind me. I’ve been working for months, doing yoga, lifting my baby weights, and walking to build up strength, leaving my house a lot more with my family. I wasn’t sure I could do this trip, the physical and mental problems that come with a 9-hour flight alone seemed insurmountable. I came up against a lot of challenges and I had a really difficult time, but we made it through and I feel so incredibly lucky to have so many memories and experiences. I hope I’ll be strong enough to do more in the future. For now I am trying to bring my body back down and heal what I have pushed through.