Retinitis Pigmentosa

pushing past my fear

~ monybalony ~ Leave a comment

I don’t know why I fear using my cane in public. A variation on impostor syndrome or something maybe? Whatever is going on my mind, I’m pushing past it with the help of friends and especially my boyfriend. So last night, we went to a show and had balcony seats. Man, I get so anxious navigating those steep concrete stairs and navigating through all those people and I’ve been noticing at every show lately there is little undercurrent of anxiety which makes me a bit cranky so at the encouragement of my boyfriend, I brought my cane. And what do you know, it was a bit easier! I still need to feel confident in trusting the cane and using it as a tool to get around easier. And I will get less self conscious and more comfortable using it the more often I do! I’ll have more chances next week, as we’ve got two more shows coming up. One is in my favorite club that’s become nearly impossible to navigate as it’s painted black. hah!

Also, if you get a chance, LCD Soundsystem is a totally dancing fun time and you should definitely see them live!

shorter days longer nights

~ monybalony ~ Leave a comment

Well, it’s that time of year that always gets me so down. We fall back this weekend and I’m already dreading the extra strain of getting around in darkness so early in the day, when I actually have to be out and about, ya know, commuting home from work and getting my kids from after school care. In the summer, I can function almost normally because there is SO MUCH light and it’s easier and frankly, way less painful. Case in point, I walked into a fire hydrant yesterday morning and almost ran into a bicyclist on Wednesday evening (who was totally being a dick by biking on the sidewalk but still.)

My seven year old tries to help but she’s seven, a kid, and often in her own imaginative world so I don’t blame her when she doesn’t give me fair warning. I am happy to announce that I did use my seeing eye cane on Halloween night for trick or treating. GO me! I am going to have to start having it on me all the time now. I need to get over whatever is holding me back (I’m not disabled enough, not blind enough, worried about what people might think/say/do that I encounter out and about) WTF ever is my issue, I need to just.get.over.it.

Running has kind of taken a back seat. Which makes me feel depressed. Which in turn makes me not want to get out and run. Which makes me feel depressed and the cycle continues. I am planning on signing up for a series of races in 2018 which will help me in the motivational department. I already am entered into one that falls near my birthday so happy 43rd birthday to me.

seeing eye canes

~ monybalony ~ Leave a comment

I started orientation and mobility training (or O&M training) with a white seeing-eye cane. So that’s been fun. I’ve yet to use the cane on my own but I will eventually. I like knowing I have the option to use it, its like carrying a security blanky with me while out traveling. I did run into a big ass dude the other night getting off the bus at a busy transit center. So soon, I’ll get tired of saying sorry and get over myself and use the damn thing. I read a great article from the BBC about how the author with low vision felt like a fraud at first using her cane and that is exactly how I feel. I don’t want any confrontation from strangers who see me get on the bus with my cane and then see me reading on my phone and can’t figure out how I can see my phone but struggle seeing my surroundings. For  many people, blind = no vision at all but the reality is blind = lots of varying degrees of vision for the majority of us blind folks. And for many of us blind and low vision folks, our eyeballs and our brains do magic to help us fake it! It truly is amazing how much our brains fill in when we have holes in our vision. But we can only rely on that for so much. Also, it makes me tired as hell to have to be constantly scanning my surrounding hoping I catch ALL the hazards in my path–look up, to the left, down, oh shit don’t run into that person coming seemingly out of nowhere to the right, up again, down, to the right, oh shit a tree branch–and that’s with the sun shining or in a nicely lit room. Turn off the lights or after sundown and it’s even harder to catch everything.

So the cane will be tremendously helpful for navigating. I want to maintain as much independence as I can in this next chapter of my life. I just have to get over myself!

 

Blind Girl Runs

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20160204_103153And falls down! Dang speed bump and cobblestone road combined to bring me down. Thankfully, I didn’t break my face or anything else, just got a bit of road rash. I think it might be time for a beer. hah. Falling down, injuring myself or running into other runners is always on my mind when I’m out running or racing. It’s a lot to concentrate on and then to also concentrate on the actual running part of running. I’m just super glad I didn’t smash out my teeth or break my face.

And on tomorrow’s run, I’ll be a bit more careful. I promise.

 

I am not a klutz

~ monybalony ~ 1 Comment

I just can’t see for crap. Poor peripheral vision means I walk into things, knock over glasses on the table, trip over cracks in the sidewalk or shoes left laying in the hallway, walk into tree branches (bare branches in the fall and winter are the worst!), run into people while walking around my store, on the sidewalk, on the bus,  basically anywhere there are people, I’m running into them.  Excuse me, I’m sorry, whoops! are words I often say as I stumble my way through my daily routines. People must think I’m either incredibly klutzy or drunk all.the.time. since I don’t look disabled or blind or visually impaired.

The other day, a co-worker learned about my eyes and asked me what I was going to do now. I said simply, what I’ve always done, live my life as I always have, full of stumbles and adventures and love.