Our beach trip has been different this year for many reasons--but the biggest one has been how poorly I've been feeling. People often think that a 'change of scenery' will magically help folks with chronic illness to 'feel better.'
I haven't used The Rolls/wheelchair for several years. As we thought about packing for the beach, I decided to pack The Rolls. I felt sad, conflicted, and a bit of an anxious tightness in my chest as I made this decision.
At the same time, I felt grateful to have the Rolls, that my mom can still push me in it, that there was room to pack it and that it would allow me to GET OUTSIDE almost daily. Plus, Tovah Rose LOVES to ride in my lap and Gershwin is the best little walker beside me.
The first day I used the Rolls here, I had tears in my eyes--I just felt so happy to be able to be out in the sunshine, not worrying about whether or not I could stand up long enough or being sad that I could only walk a short distance. I could fully take in the sights and sounds around us.
We can't use The Rolls on the beach, which really limits me. (A note about accessibility here: the whole beach wheelchair thing is a great idea, but the wheelchairs are on kept at the township office off of the island. You need a large vehicle and a strong companion to haul the chair and then push you in the sand!)
Most days here, I'm thankful to have the Rolls. At the same time, I miss the feeling of walking--most especially on the beach.
What I've learned as I further explore this disability journey is that all of these feelings can be true: I can be grateful for the mobility and freedom the Rolls provides. I can be sad that I need to use it again. I can be relieved that I can get outside more comfortably. I can be disappointed that I can't walk the beach.
What's changing for me is the desire to see my mobility devices as positives--if I would more willingly use the Rolls, I would have more freedom to go to places like museums or arts festivals or other places that require periods of quiet standing or long walks. I'd be able to enjoy the art, rather than be focused on how quickly I need to get done with what we are doing so that can sit or lie down.
For so long, I just didn't want to face the questions about why I need a wheelchair some days and why I don't other days. Or why I need one for part of the day but not all of the day. Or how I can walk part of the way and need to ride the rest of the way.
With invisible illness, I feel that the perception is that if I don't need the Rolls, I must be doing so much better. But really, if I'm missing out on life experiences simply because I need to be seated to do so, I'm cheating myself. I let the shame and guilt of an ableist society limit my life.
Disability is complicated and messy. And all of the feelings about it are okay.