Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


September 2017

#11 On our Own

Two days ago, I was visiting my Dad, and my StepMom got really sick.  So sick, we had to take her to the emergency room. She is totally fine now, but in the chaos of getting her to the ER, I left Zelda in my Dad’s car and haven’t been able to get there to pick her up.

I have to admit, not having Z the past couple of days has felt like a relief.  I got to go out and do errands at my own pace; of course my anxiety level was at an all time high, but I didn’t feel weighed down by the cane and at the time it felt like an o.k. trade off.  I started to feel like I might just retire her to an obscure hook in my closet and hope for the best when I go out walking.  But, then my husband interjected his usual wisdom.

Joe compared my not using Zelda to an insecure person continuing to drive when they know they should stop (which I can, of course, relate to, having had to give up driving at 34).  I think that what he was saying, in basic terms, is: everything is ok until it isn’t.  I may feel like being out with Z is fine because I still have usable vision and most of the time I make it back home unscathed, but that isn’t a guarantee.  I have probably had more close calls than I know about, because I didn’t see the car or person or bicycle etc. that I almost collided with.  Fuck….why is my husband always right?

Tomorrow, I will pick up Zelda.

Speaking of Zelda, today was supposed to be my 11th and last lesson with Tamar, but I cancelled it.  I thought it would be silly for me to show up at the Braille Institute to meet my O&M instructor without my cane, and I wasn’t sure until last night that my Step Mom was completely on the mend.  So, I texted Tamar to cancel and tell her that I thought we didn’t really need to meet again; for our previous meeting, I took her out to lunch and gave her a card and was totally prepared to say goodbye, so maybe I needed to stick to my plan and have that be our last meeting.  I suck at goodbyes and I didn’t want to have to go through it all again.  The problem is, I may have burned an important bridge; Tamar never got back to me and I don’t know if she is just busy or pissed off that I cancelled another lesson and told her I didn’t think I needed any more, in a text.  The text was super nice and filled with honest sentiments of gratitude, but perhaps she would have preferred a phone call, or maybe I just totally screwed up her schedule.  I figured she had taught me all I need for now and it was time for a new student to benefit from her skills and knowledge.  I hope that I didn’t completely piss her off, but in any case, my O&M training is officially over and Zelda and I are on our own.


Shut In

I have had to face a lot about myself during my almost three months of lessons with Tamar and one thing has been shining a huge light in my face the past couple of weeks; I am a total shut in, a hermit, an anti-social, never want to leave the house, crazy, chubby , middle-aged, hippie lady.  The fucking heat wave doesn’t help.

Every time I meet with Tamar, I have to tell her that I haven’t practiced all that much because I haven’t really gone out except once to visit my family and for short dog walks ( I don’t use Z when I am walking the dogs, so I am basically only using her once, maybe twice, a week.)  If Joe and I didn’t have the dogs, I may not leave the house at all.

I am, without question, an off the charts introvert; I don’t dislike people or being social, I just don’t like a lot of it.  However, I think my excuse of introversion has been a cover for being afraid to go out with limited vision.  Pre-Zelda, I sometimes went out without tripping, falling, or breaking, but it was always unpredictable; I was constantly anxious and it was easier to stay inside.  I was also avoiding the sun and the heat and the filth; but that is another story.

This shut in thing also presents a problem with my writing.  If I don’t leave the house, what the hell will I write about?  I can’t only write about my feelings; they just aren’t that interesting.

Now that I have Zelda and a whole new way of seeing the world, I need to get out into it, and listen and feel and write about it.  I need to put myself on the messy path of living outside of the safety of my apartment.

It is difficult to know, sometimes,  what I do because of who I am and what I do because of my blindness.  Can the two be separated? Differentiated?  Is there one without the other?  Does blindness dictate my whole existence?  Do I allow it to?  Do I have a choice?  Who would I be without it?  Am I blind first or am I me first?

I don’t know.


Eating Feelings

I have been eating my grief in mouthfuls of unhealthy foods and bottles of booze; since beginning my O&M lessons, I have gained 8 pounds.  But, recently, Joe changed shifts and I took it as an opportunity to get healthier, both emotionally and physically.  I haven’t had a drink since we started getting up at 4 a.m., and I thought I was eating better, but in the past week, I have gained 2 pounds.  I feel defeated and I know that I continually defeat myself;. it is an avalanche.

I have dropped down into dark places since I was a child, and although I have become more adept at getting myself out of them, the older I get, the less I want to get myself out.  I feel exhausted sometimes, just by the act of breathing and having to interact with the world on any level.  I can’t find the energy to propel the positive into a more prominent position than the negative; and so I eat.  I eat and I gain weight and I become more and more unrecognizable to myself.

It has also occurred to me, because I have gained so much weight during O&M,, that perhaps I eat so I can keep the focus on being over- weight rather than on things that are so much more important, like my writing and RP and Zelda and my close relationships. In my family, there in nothing worse than being over-weight, so if I stay over-weight, I get to keep being the failure in my family; my role stays intact and my focus steady.

Most days, I wake up wishing I could step out of my skin and be a better person for everyone around me.  A better wife and daughter and sister and friend.  Perhaps all of these feelings are happening simply because my O&M lessons are ending and it will be me and Zelda and blindness,  in a world that is breaking apart, a country that is falling into ruin under fists of rage and hatred.

I don’t write about this for sympathy, or even understanding, but simply because it is the truth and I know that it isn’t just my truth. So many people feel versions of this and I hope that my writing about it may help someone else feel less isolated.

This sadness isn’t all of who I am, just a part that I recognize and try to rise above so I can become someone better, someone who I know I can be. I look forward to the day when I can see the person behind all of this darkness.




#10 Prolonged

I imagined that the end of my mobility training would have clear and dramatic lines, but the end has been prolonged and is petering rather than exploding.

I took Tamar to lunch on Thursday, to thank her and to say goodbye, but we decided to meet one more time so she could teach me about the logic behind the madness that is the layout of Los Angeles.  That will happen next week, but it still feels as if my time with her has come to an end, and also as if it never has to entirely come to an end.  I know that she will be around and available if ever I need some more lessons.  So, what now?

I am in my air-conditioned apartment, avoiding the heat wave that is suffocating Los Angeles.  I write and try to reflect on the past three months, how my life has changed now that Zelda is in it and how I am still so resistant to that change.  I decided to be kind to myself around the resistance; I am not on a clock; RP has no adherence to time and I can incorporate Zelda into my life in whatever ways I choose.

Right now, I look at Zelda and I feel exhausted, and like a failure. I always imagine myself as so strong, able to go into a situation with fearlessness and embrace whatever fucked up thing I am forced to undertake; but this is my fantasy and, inevitably, I come out the back door, the same chubby, middle-aged, screwed up person who walked through the front door. But, this is just one side of the coin, and although it is pressed pretty flat to the ground at this minute, I know it can be flipped.

On the other side are all the discoveries I have made about how Zelda can change the landscapes I traverse.  I own the moments when the world came to life through sound and touch, and how those things allowed me to shed my anxiety.  I recognize that it takes courage to bring Zelda into my life and to write about it in the most honest way I can.

Next week will be my last official lesson with Tamar and my last O&M post, but I think Zelda and I may still have some adventures to come.

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