#one of the universities i applied to has a doctor who society but i'm honestly considering not going

[magiefish]

I have a bunch of spare penny's so I'm coming up with a hypothetical idea that anytime I mention one of my hyperfixations in front of my family I have to drop a penny in a collective jar that everyone else can use except for me because. My god. Do I need to stop being annoying.

[chronicallypainful]

I'm back, and a story

So, I think I'm back. As it turns out, the emotional support that this community can provide is really valuable and I kind of need it.

Why did I leave? Well, grad school is a lot of work. And being an adult is a lot of work. Between those two facts and my decision not to use my computer within two hours of bedtime, I just stopped logging in.

And why am I back? No, neither grad school nor adult life has gotten any easier. But I have been seeing a therapist for a few months now, and I have come to realize the extremely high value of social support from other people with chronic illnesses and/or disabilities.

That realization came out of discussing shame with my therapist and talking in particular about the experience of getting my first mobility aid. You could probably reconstruct most of that story from my archives here, but I want to tell that story in its entirety. Because I think it is powerful.

Let's set the scene. I'm 21 years old and in the spring of my junior year at University. I've had chronic pain of some sort or another since the age of 17. The pain first appeared in my wrists, slowly spread throughout my arms and shoulders, then to my neck and back. At this point (age 21) I have had some pain in my feet, ankles, and knees for honestly about a year, but I am in denial about this. Even as I start taking the campus shuttle more and more instead of walking to class, I resist admitting that the pain has in fact spread to my lower body.

I'm considering what to do for the summer, and, because of some discussion that had been had about more intense medical treatment over the summer (which ultimately didn't happen) I have not applied for summer programs like REUs or internships. My research mentor (a professor in the math department) is happy to have me continue working with him over the summer on ongoing projects, and I have a lease for an apartment near campus. So, I make the decision to stay on campus for the summer and work on research.

So, when I am contacted by a representative from my high school to say that they are running an outreach program for high schoolers on campus for a week during the summer and are looking for RAs to supervise the students, I'm excited. I get even more excited about the opportunity when I learn that one of my good friends from high school will be the other female RA.

And then I pause. One of the requirements of the job is to escort the students to various classes and activities around campus. This means walking. And walking has become painful.

The emotional side of my brain, still not wanting to admit that my pain has in fact spread and that I might really benefit from a mobility aid, comes to the conclusion that, well, I guess I just won't take the job then. It is at this point that the logical side of my brain interjects: "Really, you're going to not take this job because it involves walking? When our society actually has a whole range of tools that help people with the task of walking? And you haven't even looked at those tools?" And so the hunt for a mobility aid began.

But the search was not without inner strife. I felt what I now recognize as deep shame when even considering using any type of mobility aid. Society had conditioned me to believe that these tools were reserved for older people and people whose doctors told them they needed one. I thought that using a mobility aid was somehow cheating or taking something that I did not deserve.

And this, as you may well have guessed, is where tumblr comes in. In particular, the spoonie community on tumblr. At this point, I had been posting and reading posts and discussions from this community for about a year. I had seen and read enough to know that lots of young people with chronic illnesses (including without a diagnosis) used canes and other mobility aids. I don't recall ever asking "is it okay for me to use a cane?" But I did read lots of responses given to people who did ask variants of that question. The community treated these people with kindness and compassion and reassured them that their needs, whatever they were, were legitimate.

You spoke about how the choice to use a mobility aid belongs to no one but the person using it. You affirmed that we all should make choices that help us live our best lives, minimizing pain, maximizing function and happiness. And, perhaps most importantly, you shared your own stories about the shame, embarrassment, or awkwardness that came with getting your first mobility aid. You showed me, through your stories, that I am not alone. You showed me that my experiences, my emotions, were not an aberration but the norm in the relevant community.

I won't pretend that that made it easy. It still required a leap of faith and a choice to defy shame. I still hesitated to add my first collapsible cane to my Amazon shopping cart. I still struggled to discuss my new walking poles with my parents. But I did it. And then I hesitated to go out in public, to show up in my classes with a cane or to walk down the street with my poles. But I did those things too. And it did get easier.

And I took that job. And I walked those students around campus with a pair of walking sticks decorated with patterned duct tape and beaded tassels.

Since then, I have continued exploring the world of mobility aids to meet my varying needs at different times and in different contexts. I now own one collapsible cane, two non-collapsible offset canes, a pair of walking/trekking poles, a rolling walker, a pair of Smart Crutches, and a Walk Aid scooter. And I use them all, in different situations and according to my varying needs.

I won't pretend that my shame is totally gone. There are still times when I feel ashamed of my mobility aids or awkward about using them in public. There are still times when I struggle to assert my needs as a disabled person. In short, I still have work to do. But I've come a long way, and this community is a major reason why I have been able to do that. Thank you.