Forgetting How to Walk on Old Legs (Bullshit Ensues When The World Won't Accommodate Disabled People)

“Hi, this is Stefanie Kaufman. I’m a sophomore and I’m calling Health Services because I’m really sick and also I can’t walk and I need a cane because I have a meeting to go to.”

This was my desperate and final plea to Brown University’s Health Services. A plea to help me function. It’s finals season, and I have a Very Important Ivy League Meeting to go to — don’t you see? Over the course of a month, I had gotten sicker, weaker, and thinner, and was experiencing horrible pain in my legs. But clearly, priorities.

(Backstory): I had always been a pretty meaty athlete. I’m talking thighs of steel. And calfs so big you can’t wear heels/walk up the stairs without them almost hitting someone in the face. In my 14 years of playing soccer, I never worried about my legs. I broke my ankle 5 times, had ligament reconstruction and a rod placed in my joint, and I still got back on the field. Nobody’s saying I was anywhere near as good, but I did it. And before my last ankle fracture, I ran a half-marathon. Yes, 13.1 miles. So, when you’re an athlete your entire life, with legs of steel, and you run, on average, about 3.5 miles a game — it was weird when my legs gave out from climbing a simple flight of stairs.

But soon it became much more than muscle exhaustion. I was experiencing severe numbness, tingling, bouts of paralysis, intense spasms/shaking, and excruciating, radiating pain. It developed slowly, over the course of that month — alongside a gnarly kidney infection. My mom likes to ask me how I didn’t notice my life was falling apart (i.e. the legs), but it was finals season. We are conditioned to ignore our pain and ailments until they literally blow up in your face and you have to deal with it.

Bringing me back to my appointment with Health Services. I was barely walking, led by two friends, and I begged for a hand-off cane so I could power through and get on with the day. Carpe diem and all. You know — finals!!!!!!

“Stefanie. If you, uh, can’t walk. I can’t give you a cane. We need to take you to the hospital.” My boyfriend, who knows me better than anyone, looks at my doctor and says, “Can we take her after the meeting?”

Look at me now.

The last time I was able to stand on my own was December 12, 2014. Nobody knows why. I've heard it all: lupus, MS, spinal inflammation, shock to the nervous system, residual effects of infection, reverse motor effects from my ankle surgery, internal nerve rewiring, and my personal favorite, anxiety. I’ve been tested for everything under the sun, examined by everyone under the sun, and have come to accept — some things just can’t be explained. What I do know is, occupational therapy works. Aquatic therapy works. Intense strengthening therapy works. It has taken months, and an incredible team at RI Hospital’s Occupational Therapy Center to get me where I am today. Literally, standing. Not on my own, yet. But partially standing, with a straighter spine, stronger muscles, and a shit ton of pain. And it didn’t always look bright. For a while, I had no idea if I would ever walk again. And I still don’t. But I have evidence to show me that I can change this shitty fate, and until I have tried everything, I won't stop trying to regain my legs.

Where my spend weekday afternoons.

It’s been an interesting, difficult + unique battle. Especially juxtaposed right smack next to my mental illness(es). I noticed that people regularly asked how I was doing, if I needed anything, praised me for continuing to “fight” and “go on”. Telling me they could never “do what I do” …

Listen.

Remember this.

I am more debilitated by my depression and OCD than I am by my legs not working right. Fact. Every day, I am affected in a million-and-one ways that are invisible to the human eye. They deserve praise and attention. I distinctly recall my Russian professor cheering each day I arrived in class, no matter if I was 5 or 10 minutes late. It snowed for months on end, and she knew how hard it was for me to get to class. But, did she know how hard it was for me to get to class every other day of my freshman and sophomore year? I would have loved to hear her cheer for my arrival on the days where I was crippled by depression and obsessive thoughts, clinging to my bed for safety and warmth. The differences, to me, felt unfair.

When I was trying to get accommodations, for example, I was told everything could be taken care of in advance — before my doctor’s paperwork had gone through. Because, clearly, I had a disability. I cannot tell you the amount of times students (including me) have needed dire accommodations relating to psychiatric illnesses, and because they were not properly documented before the episode/occurrence, no accommodation could be made. I felt lucky to be lugging around this walker. To me, it felt like a big “LOOK, HERE, SEE, IT’S REAL, SEE, LOOK!!!!!”. However, as I write that, I realize how un-lucky I currently feel, and must document all the stupid shit people have said to me. Enjoy.

Shit People Say (Actual Quotes)

1. The reason we don't have elevators is because this is a historical building.
2. That must be such a challenge.
3. Your teachers shouldn’t give you a problem. I mean, they can literally see the walker. It’s not like it’s invisible!
4. What happened to you? When will it get better?
5. Jesus will heal you if you just keep praying.
6. Is it hard? Like, what are you going to do if you can never walk again?
7. So, what’s the deal, with uh, that, uh, walker thing?
8. But you're so pretty!!!!!!!!!!!!!!!!!!!!!!!!!!
9. Yeah it’s totally accessible there’s just like, 3 stairs.
10. Oh my god my grandma uses a walker. You guys should race!
11. You're, like, so inspiring.
12. Omg yeah, I feel you. I get so annoyed when the elevator’s broken.
13. At least you can sit whenever you want.
14. Ugh, I wish I didn't have to stand.
15. I could never do what you do.
16. I literally don't know how I would get myself up in the morning.
17. Like, how do you motivate yourself?
18. When will it get better?
19. Oh, that sucks.
20. Sometimes, I wake up feeling horrible about my life. But then I think of you.

Things That Should Never Have Happened

1. My boyfriend carrying me up flights of stairs to my classes, friend’s rooms, eateries, etc. in buildings that are not handicap accessible.
2. Crawling up a flight of stairs to a second-floor meeting with Administration at Brown University. (The meeting was in our SEAS Building — our Disability Accommodations Building — but don't worry! That’s just on the first floor).
3. Walking into a bathroom, 15 stalls, 1 is taken. The handicap stall. A girl comes out. With two very functional legs. Please, I beg you, do not, I repeat, do not use the handicap stall unless you need it. Not even if you’ve never seen someone in a walker, wheelchair, crutches, etc. I know we all want the extra room, but when your walking device literally doesn’t fit inside the doors of “normal” sized doors, and you really have to pee, you get fucking angry. Lady, there are 14 other stalls for you. It’s literally infuriating.
4. Arriving to class after a blizzard and the Handicap Accessibility Door is blocked by snow. The stairs of my dorm are clean, but the ramp is covered in ice and snow. Come on.

How To Not Be an Asshole

1. When you offer to help and I say no, don’t get mad.
2. Don’t come over and help anyway when you see my struggling. Let me learn how to do it myself. Let me be independent.
3. Don’t presume anything about what I’m going through. Ask questions and learn.
4. Don’t call me inspiring. I have done very inspiring things in my life, but not being able to walk is not one of them.

5. Don’t ask when it will get better. I don’t know. I wish I did. I’ll let you know when I do, I promise.

Advice to Myself

Do not let this limit you. Accept help. Get up there, and do the poem anyway. They’re not even looking.

Stefanie Lyn is the Executive Director + Founder of Project LETS, Inc.

She likes to tweet and e-mail (stefanielyn.lets@gmail.com).

#LETSTalk