#aphakia

Not all of us can drive. Not all of us can safely navigate new places.

"Self-care” advice is always centered around abled people and I’m tired of it.

I know there's never going to be a one-size-fits-all solution, but can we get more “self-care” advice for people who can’t easily leave their homes? Or people who can’t leave their homes at all? What about people who can’t even leave their beds?

I never get to schedule my appointments at my own convenience. It always has to be when someone else is able to drive me. If a certain day conflicts with the rest of my schedule? Too bad. It’s the only day someone is available to take me. If mornings work better for me? Too bad. No one can drive me until the afternoon.

I never get to decide what time I want to leave for an event or how early/late/on time I want to be. It’s always up to whoever’s driving and what they want to do. If I want to get there early? Too bad. They’re not in a rush. If I want to come later? Too bad. They want to get there before the event starts.

I never get to decide when I leave social events. It always depends on when the person I rode with wants to leave or when is most convenient for whoever’s picking me up. If I’m not having fun and want to go home? Too bad. The person I rode with wants to stay until it’s over. If I’m not ready to leave yet? Too bad. My ride is outside waiting on me.

And I’m so tired of always having to ask for permission as a fully grown adult because I can’t drive. Can I schedule my appointment for Tuesday? Can we try to get there early? Can we run an errand on the way? Can we stay a little longer? These are decisions I should get to make but it’s never up to me. I never get to make my own decisions.

And if there’s no one willing or able to drive me? I have to cancel appointments. I miss out on social events. I can’t go anywhere. Not because I’m unable to attend or because I decide that I don’t want to go. It’s not up to me. It’s never up to me.

At least in my specific situation, not being able to drive also means:

not getting to choose how early or late I arrive to an event (or when I get to leave the event).

not being able to go for a drive when I'm upset or need to clear my head.

not getting to pick which route I take to a destination or whether/where to stop on the way.

not being in control of my own safety while I’m on the road.

not getting to listen to the music I want in the car (at least not without worrying I'm bothering whoever I'm with).

not being able to be the designated driver when I’m out with friends (even though I don’t even drink).

not being able to help drive during long car rides so whoever I’m with can take a break.

not being able to get to a friend in the middle of the night if they need someone.

not being able to go anywhere spontaneously or last-minute if I don’t have time to arrange a ride.

not being able to go somewhere if no one can/wants to give me a ride (especially if it’s too far away).

feeling left out any time people start talking about cars or driving (which happens surprisingly often).

having to miss out on events if the person who I was supposed to ride with has to cancel.

never going anywhere by myself.

constantly having to ask others for rides, to the point where I burn out on it and feel like a burden.

And so much more.

I’m constantly having to confront the fact that I would live an entirely different life if I could drive. But instead, I’m an adult with the independence of a teenager.

Why make families get a prescription at ACH and glasses and/or contacts for their children elsewhere?

I recently wrote about the Vision Center at Akron Children’s Hospital and pointed out that, no matter how excellent the Vision Center’s eye surgeons and optometrists are, the center abandons their patients in the last mile of care.  Glasses designed for the general population rarely fit patients with atypical facial anatomy. Compared to typical children, my daughter Lyra’s facial features are…

Akron Children's Hospital needs to add optical care to its Vision Center. Here's why.

Rainbow Babies and Children’s Hospital has it. Nationwide Children’s Hospital has it. Even Dayton Children’s Hospital has it. Akron Children’s Hospital, however, does not. What is lacking? An optical department in its Vision Center. During my pregnancy with my now 11-year-old daughter, Lyra, non-invasive testing revealed nothing unusual. With eyes scrunched shut, Lyra cried loudly at the moment…

Αφακία είναι η κατάσταση στην οποία ο φακός (κρυσταλλοειδής φακός) απουσιάζει από τον οφθαλμό με αποτέλεσμα να έχει χαθεί η ικανότητα εστίασης. Ο φυσιολογικός φακός στο ανθρώπινο μάτι συγκρατείται στην θέση του από πολλαπλές λεπτές ίνες.