The Bright Side

Posted in Retinitis Pigmentosa on February 19, 2017 by floweringink

My sister is about to return from an epic adventure in India with  her family.  She shared beautiful pictures on facebook and posted about the various places they traveled.  I feel so happy for her; this is something she has always wanted to do and her joy is infectious.  I also feel sad.  I think about all the amazing things the world has to offer and how I may never see them while I have enough vision to take them in.

My husband is from Ireland and he speaks of its beauty  often; I see the joy in his eyes when he shares stories of his life before America swallowed him up.  I have wanted to travel to Ireland for as long as I can remember and now, the thought of being able to see it with  the  person I love most in the world makes me want to go all the more.  A broken leg and dogs and money and time have all gotten in the way of our going to see his home and I worry that when we are finally able to go, I won’t be able to see the green and the lush and the beauty of the country of my dreams.

I try to live in the moments that are closest to me, but it is difficult to do when you have an unpredictable disease.  I don’t wallow in thoughts of what I may loose as my vision dies, but I do have days where I feel temporarily consumed by grief and fear. If I was a good person, I would probably be more positive and always look on the proverbial bright side, but the bright side literally hurts my eyes.

Empty Case

Posted in Blindness, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Pugs, Retinitis Pigmentosa, Vision Loss with tags , , , , , , , , , , , on September 24, 2016 by floweringink

Every Thursday night, I take my pugs, Blossom and Jade, to a playgroup at a local pet shop.  The group is referred to as  Yappy Hour and my girls love it.  I don’t do the dog park thing, so this is the one opportunity a week they get to be off leash with a group of other dogs.

The play commences at 730 in the evening and lasts about an hour.  In the fall and winter months, it is already dark by 730, so I can just wear the glasses I use for all activities that don’t involve the sun.  My night vision is almost non-existent, but the dogs keep me in line and I always walk the brightest path along Sunset Blvd.  I have walked that stretch of road so many times, even the grooves in the sidewalk are etched in my memory.  I am not generally comfortable being out by myself at night, but I cling to the false sense of security that my pugs give me and brave the dark for their sake.

In the Spring and Summer, I am faced with a season specific dilemma.  The sun can stay out as late as 8pm on warmer nights and I struggle with the decision between wearing my sunglasses and having to bring a bigger bag with me or baring my eyes to their most bitter enemy.  I have to admit that I can be a bit lazy and so sometimes choose exposure to the sun over packing and carrying a bigger bag, but most of the time, I wear my sunglasses and bring the regular ones for the hour in the pet shop and the walk home.

On an evening in the middle of the summer this year, I got myself and the girls ready for Yappy Hour, packed their bag with treats and poop bags and put my regular glasses into another bag with my wallet.  When I got to the pet shop, I tucked myself into a corner to change my glasses and found myself in an unexpected bind. The case was empty.  I had left my glasses on my desk and brought an empty case. Without glasses, the world is a complete blur for me, so I started to panic, just a bit.  I was wearing my sunglasses, but they were no use to me; they are too dark to wear inside and it was getting dark outside.  How the hell was I going to get home?

I took it in stages.  First, I had to get through Yappy Hour without being able to see who was who or which dog was which.  Fortunately, I am well-known to most of the staff at the pet shop and the woman who oversees the playgroup is our dog trainer and knows about my RP. I let her know what was going on and asked her to keep a bit of an extra watch on my girls because I couldn’t see them clearly running around the play area.  But, I still had to figure out how I was going to get home.

I don’t know the other humans in Yappy Hour well enough to ask them for a ride home and I think most of them walk there anyway, but thankfully my husband works about 5 miles from home.  I hated asking him to leave work early, but this was an emergency.  I called him and of course he agreed to come and get me, but he couldn’t leave until almost 9 and the pet shop closes at 9.

At 830, Yappy Hour came to an end, I put the leashes on Blossom and Jade and I just sat there pretending to look for something in my bag while everyone else trickled out.  Then, I got up and began to wander the store, taking care not to topple over displays or crash into any pillars.  I chatted with our trainer for a bit, but she and the other staff were busy getting the shop ready for closing time.

The time passed like molasses.  845 and my husband hadn’t arrived.  Ten to nine, still not there.  Five to nine, the staff were locking the back door and there he appeared; my hero come to escort his blind wife home.  I was so grateful to see him, but also felt foolish and ashamed that I hadn’t been more prepared.

Since that night, I haven’t left the house without making sure my glasses are in the case.

Country Road

Posted in Blindness, Degenerative Retinal Diseases, Disability, Life in Los Angeles, Retinitis Pigmentosa with tags , , , , , , , , on August 11, 2016 by floweringink

 

Hollywood doesn’t set you free; she crawls under your skin and into your head.  She feeds you her pulse and pulls you into her sun starched rhythm.  In Hollywood, there is no such thing as typical, no blueprint or uniform.  We are not identifiable.  We move slowly but are never settled.

At the junction of Sunset and Poinsettia, I was waiting for the light to change, when a girl on a bike crossed my path.  The bike was old-fashioned with big white washed tires, flowing handle bars and a red basket at the front.  She peddled slowly, as if she had the whole day to ride aimlessly and contemplate simple things.She wore a big yellow sun hat and a tank top saturated with the sky.  The scene would have transported me to calming images of country roads, if it weren’t for her tramp stamp and exposed glittery g-string.

Across the street, an emaciated man with brittle shards of brown hair stopped suddenly and shouted into the ground, holding himself tightly around his middle.  He seemed to stop breathing for a few seconds, then leapt into the air and raced off down Sunset, darting around tourists and sidewalk nappers.  The girl on the bike didn’t even glance in his direction, just kept peddling further into her own imagination.

A withering woman stood next to me, exhausted, old Hollywood etched into the wrinkles on her face and hands.  She smiled at the girl on the bike, remembering her own star lit youth, and watched the dance of the shouting man as if it was something she had seen a million times.

The light changed, I secured my grocery bag on my shoulder and crossed Sunset to walk the 3 blocks home.

 

Life in Degrees

Posted in Blindness, Degenerative Retinal Diseases, Disability, Fear, Loss, Retinitis Pigmentosa, Serious Illness, Unemployed, Vision Loss with tags , , , , , , , , , on August 7, 2016 by floweringink

With my recent decline in vision and subsequent approval for mobility training, I have been retracing my RP life in degrees.  When I was diagnosed with RP, I had about 50 degrees of peripheral vision.  7 years later, I had lost 50% of my already limited vision and had only 25 degrees; that was when I stopped working.  In the 7 years since I have stopped working, I have lost just over 5 degrees and I finally  and completely believe I made the right choice to stop working.  I have spent days feeling useless and lazy and telling myself that I should be working, that there was no absolute proof that stopping full time work was preserving my vision.  There still isn’t absolute proof, but I think the cards are stacked pretty heavily in favor of not working.  I hadn’t thought about it in comparison to how much vision I lost in the first seven years, but now that I have, I feel fortunate that the progression of my RP has slowed so dramatically.  Even though the recent vision loss has put me into a whole new realm of the RP world, and that is upsetting, I am able to see the good fortune in my story.

It doesn’t mean that I am not afraid.  I am terrified.  I am already imaging myself going to sign up for the training and being shunned for the fact that I do have some vision; enough that I can get around without the aid of mobility devices and see your face when you are talking to me (as long as you are not too far away).  I feel like my RP is the same as almost every other aspect of myself; not quite right, not good enough or, I suppose in this case, not blind enough.  I am afraid of being out on the street with a long white cane that calls attention to my presence; I prefer being in the shadows.  I am afraid to take the steps I know I must take and knowing me, I will take my time.

I do plan on pursuing the training and I look forward to being less bruised and having fewer collisions, but I have to ready myself for what I believe will be a huge step and a huge undertaking.  It will also involve homework and practice and I seriously suck at both those things(which I am sure is apparent in how infrequently I post here).  But, as I continue on this path, I will write about it and share it with anyone who wants to take this part of the RP ride with me.

Navigating Urban Life

Posted in Blindness, Degenerative Retinal Diseases, Disability, Fear, Life in Los Angeles, Loss, Retinitis Pigmentosa, Vision Loss with tags , , , , , , , , , on August 3, 2016 by floweringink

In the years since I stopped working, I have made a point of avoiding the navigation of urban life as much as possible.  I hide away.  Frustration and fear are my constant companions.  My vibrance has been sand papered away and I  blame RP, folding myself secretly into the web of it’s darkening arms. I put on a brave face and pretend that having RP is no big deal, just an annoyance.  And, then I have another collision which leads me to more thoughts about the white cane.  I think it is mostly for other people because I don’t really need a cane. I am not that blind.  Am I?

After my most recent collision in which I sustained injury, I decided, with the support of my amazing husband, that it was time to actually take the step and inquire about mobility training.  I contacted my low vision specialist who told me that I had to have a current visual field test in order to qualify for cane training; I made the appointment.

My last visual field was at least 4 years ago and at the time, I had between 20 and 25 degrees of vision; it has to be 20 or less to qualify for the training.  I had the test and waited for the results, knowing that I was facing a double edged sword.  If my visual field results were the same as 4 years ago, I wouldn’t qualify for the training, and if I do qualify for the training, it means that my vision has deteriorated.  Today I got the results. I qualify.

The news wasn’t surprising, but I was surprisingly upset. I suspected what the results would be, but I also secretly hoped they would be the same as 4 years ago. I had worked it all out in my head, the practical reasons for getting a cane, but I hadn’t really thought about how it would make me feel.   I stared at the subject line of the message, terrified to read the email. I sat at my desk, my breath knocked out of me, as panic escaped from my chest uncontrollably. When I finally got the courage and read the results, tears ran desperately down my cheeks.  How can I be blind enough to need a white cane?

Leisure

Posted in Blindness, creativity, Degenerative Retinal Diseases, Disability, Fear, Life in Los Angeles, Loss, Retinitis Pigmentosa, Vision Loss, Writers Block, Writing with tags , , , , , , , , , , , , on June 21, 2016 by floweringink

RP has thrown me into a life of leisure.  It sounds decadent,  but has felt confusing and burdensome.  It has been a struggle for me to brush off the restraints of socialization and embrace the time that RP has afforded me.  I had such grand ideas when I first stopped working in the traditional world; I was going to immerse myself in writing and finish my memoir, but instead I retreated and built a cocoon of shame and self loathing.  I spent years trying to figure out how to be a blind person and forgot how to be anything else.

Although my days of not working can be exhausting because of the need for constant visual vigilance every time I leave the house, I get to choose when and where I go.  I have the freedom to decide what my days look like and what path my life will follow, unencumbered by the 9 to 5.  in the past year, my focus and my attitude have shifted.  I have become a little less afraid and started to think about my life and myself in a more complete way.  I am not just the fat girl who is going blind.  I am a writer and a wife and a friend and a mom to 4 pets.  I am learning again to be person beyond the boundaries of my disease and feeling incredibly grateful for my life of leisure.

Pillars and White Canes

Posted in Blindness, Degenerative Retinal Diseases, Disability, Dogs, Fear, Pugs, Retinitis Pigmentosa, Vision Loss with tags , , , , , , , , , , , on June 13, 2016 by floweringink

I am a walking disaster. The bruises on my arm and hand and legs, and the bump on my head, remind me that I can’t just walk through the world as if I am graceful, as if I can see.

My most recent assault was perpetrated by an enormous pillar in the middle of an aisle in a Sprouts grocery store.  The fucking thing was wider than me (which is saying something), and I didn’t see it.  I was on a mission for roasted veggie chips in the bulk section, but the pillar had other ideas.  I ran into it face first and hit is so hard that I ricocheted off and landed on my ass, hitting my arm and hand against the bulk bins.  It sounds comical as I write this, and I did laugh at the time, but it really hurt and got me thinking again about white canes.

Every time I have a more memorable collision, I start contemplating white canes.  I wish the damn things weren’t white; I am cool with the red tip, but I want a cane that can be personalized with dragons or flowers or pictures of pugs.  I have an array of aesthetic desires when it comes to accessories.  And honestly, the cane scares me.  I wonder what it will mean if I take the step toward a mobility device and how I will have to readjust to the world around me.

I know all the reasons why a cane would be a good idea; I could avoid collisions and accidents and it would let people know that I can’t see them.  The cane would scream, “blind girl coming through”, and the crowd would part to let me pass.  But maybe I’m not ready to be that blind.  Maybe I need to hide in my partially sighted shadow for just a little while longer.