Categories
health macular dystrophy

On Being A Legally Blind College Student

by Shabnam Ferdowsi

You can’t tell, but I’m legally blind. I started noticing my vision problems when I was 11. Nine doctors and six years later, in my last semester of high school, we figured it out. I have a genetic condition called Macular Dystrophy that causes extreme near sightedness and central vision loss. In simple terms, I can’t see much detail more than a few feet away from my eyes and I can’t focus on any one point, among other minor symptoms (like my deep loathing for fluorescent lights for one). There is no cure yet, and glasses don’t help.

So I just deal.

I’m going on ten years since my first optometrist appointment in 6th grade, so I’ve become pretty good at dealing. I enlarge the font on my phone, turn on the zoom functions on all my electronics (thank you Apple!), sit in the first chair of the classroom, and tell as many people as I can.

I used to be embarrassed. When people say “hey” from across the quad or as they bike by, I can’t tell who it is or if they’re even talking to me. So I ignore it, and it used to eat at my self-esteem like nothing else. Since my central vision is low, I can’t focus on any one point so when I’m talking to people, I can’t physically make my eyes look them. So I just look in that general direction, which used to look terribly off when I was just getting used to this whole thing. I’d be talking to a friend who was standing five feet away and she’d constantly turn around as if to see what I was looking at, and I’d just want to tell her, “I’m looking at you, damnit!” I hated going out alone anywhere because I couldn’t read signs or menus. Of course, I definitely would not ask for help. Help is for the weak, I thought.

But the thing is, my eyes are weak. There is nothing I can do about it. I’m not normal and I just need to own that. So here I am.

I’m a legally blind photographer who loves going to concerts, making videos and meeting people.

I auto-focus, so that answers any photography questions you may have. I cannot manually focus, and that causes all the problems videography may have. I used to go through whole shoots thinking I was focusing it all right, but then I’d throw it onto a screen and HELL, non of it would be focused. It’s discouraging, and I used to wonder all the time if I should quit. But screw quitting. I’ll put it on a tripod. I’ll make friends who shoot, start a team so I can direct and they can focus. I’m making it work for now because I’m not taking no for an answer.

Yes, I’m technically handicapped and thus can’t get a regular license. Yes, it royally sucks living in LA. 90% of the stress I ever have comes from late busses. The other 10% comes from grumpy bus drivers. I hate this city for this reason. I’m not planning on having a typical nine-to-five job. I’m going to be moving, shooting and meeting people all over. I’ve been wanting to shoot in Venice Beach for over two years, but who wants to spend 2 hours on a bus there and another 2 hours back? No, thanks. So I’m trying to get out as soon as I can.

But then again, I love this city because it’s home. I love it because it’s diverse. I love it because my camera loves golden hours and palm trees. I love it because I’m building a network of people who care for and are passionate about the same things I am.

I make it a point to make sure everyone I meet knows what my situation is. I’ve decided that asking for help is not giving in, but rather accepting this life to be able to live it to the fullest (if I may be cliché). So now I’m going to start asking for help, because I’m sick and tired of getting stuck (physically and not). And if people think it’s too weird of me to ask them to read the entire menu out loud, or drive me back from the concert since buses don’t run past midnight, or to simply tell me who’s waving at me form across the room, then I’m not sure if we’re real friends.

Categories
diabetes health pots

Salt/ Sugar Sisters

It all started sitting on her floor. She had a needle in her arm, injecting insulin. I held a pill box with 8 pills in it for the day. I tossed the pills into my mouth, washed them down with water, and got up to continue my morning routine. She laughed, “we’re just a bunch of druggies”. I’d never noticed before, because this was just my normal. But it’s true.

Chelsea has type 1 diabetes. I have POTS. We are both dependent upon medication and lifestyle changes to live “normal” lives. But we both live “normal” lives (if you can even call any life normal). Chelsea is dependent upon insulin and glucose. I’m dependent upon a variety of medications, extra water, and salt. We joke that we’re both dependent upon white powders (sugar and salt), which is in some sense true.

If we don’t exercise, we feel crappy. If we don’t sleep enough we feel worse. If we don’t eat right… you get the picture. Self care is a non-negotiable for both of us. In 2016, when most millennials are running at light speed to achieve, socialize and have it all, this can be a hard thing to prioritize. But when it’s what you do to survive, you make it work.

I realized during this time on her floor that Chelsea and I are bonded by a dependence on something outside of ourselves. Other people could go without drinking water or eating sugar. Not Chelsea and I. How does this simple fact change the way that we view the world and live our lives?

  1. We cherish our time on this earth and every day we’re given. We know that it could be gone at any moment, and don’t take anything for granted. Likewise, we value this earth as itself a miracle, nature as sacred and something to cherish and protect *cough* recycle and compost *cough*.
  2. We value people. As autonomous cell-machines that contain the miracle of life, people are just that – a miracle. Every one is different. Every single person has value. Every single person has interests, passions, fears, trials, and victories. Chelsea and I love fiercely and yearn for everyone to see their value and worth, know themselves at their core and express themselves. How does this manifest for us? For Chelsea, this manifests through empathy and dance therapy. For me, through connected, heart conversations and photography.
  3. We don’t sweat the little things. If Chelsea doesn’t take care of her blood sugar or I don’t drink water, we could have (and have both experienced) a medical crisis on our hands. Since we’ve been through these things and made it out on the other side, life’s stresses: the unexpected curveballs and all, don’t really phase us. We’re not superhuman- we still feel the emotions associated with a break up or an apartment lease falling through, but we are able to put those things in perspective.

Is it a coincidence that both Chelsea and I are artists? That we love reading books by Brene Brown, talking about empathy and vulnerability, and loving fiercely? Perhaps. Or perhaps experiencing the fact that we are mortal- that this life is not guaranteed- puts us in a less risk averse position than our peers. We’ve lived a bit more life than your average 23-year olds, so we’re determined to live our lives how our hearts and souls guide us to, not how society prescribes.

 

Categories
inspiration mental health

FEAR, Part 1

FEAR. //

Let’s talk about fear.
Fear that you’re not enough.
Fear that your work won’t live up to your expectations, others’ expectations, or your previous work.
Fear of saying the wrong thing.
Fear of being judged.
Fear or not having enough: love, money, food, energy.//

As an artist, my most vulnerable fear is that I’m a fraud. That my last photoshoot was a fluke, and that I’ll never make work that lives up to that caliber again. That I somehow lucked into getting nice photos. That I don’t have intrinsic talent or skill.//

What do you do when those gremlins come out, perch on your shoulder and start whispering in your ear?//

Get out. Move. Move your body and get endorphins flowing.//

Connect. Reach out to a friend. There is nothing as powerful as a genuine human connection to affirm your existence, and the words of a dear friend can turn you around. //

Look within. While it’s great to connect with others (and as an extravert that’s my go to), we also need to be able to rely upon ourselves. If we can cultivate self-grace, we can call out our own irrational thoughts and show ourselves love. //

What fears do you struggle with, and how do you overcome them?

Originally posted as an instagram post.