I was moving in with my then boyfriend (now husband) and wanted to buy something special for a little corner of the apartment that would be all mine.  I looked at hundreds of vanities online and finally decided on a beautiful cherry wood table with a big mirror,  lots of drawers and a beautiful matching bench.  It was the vanity table I had always wanted.  It was perfect.

When the vanity arrived, I was so excited.  I unpacked it carefully and set it up in that special corner that was all mine.  I filled the drawers with tubes of lipstick and make up brushes.  I turned on the special light my husband had installed above the table and sat on the beautiful matching bench.  I looked in the mirror, but I couldn’t see the contours of my own face.  I would never be able to use the vanity table I had dreamed of since I was a little girl.  It was yet another thing RP had stolen from me.

My brother was diagnosed with a very serious illness in May of this year, had surgery in July and has been suffering from one complication after another ever since.  I go to the hospital to see him almost every day, and every day my heart breaks just a little more.

His most recent stint has been about 3 weeks so far and he will most likely be there another 2.  My husband works at the hospital, so I usually go in with him around 2 and leave with him at 10:30.  I stay and sit with my brother.  I talk with him and watch tv with him if he doesn’t feel like chatting.  I knit while he sleeps.  I help him with his food tray and straighten up the hospital room. I find the nurse if he needs help.  I think about how unfair it is that such a good person has known so much suffering. My heart breaks.

I find myself wishing I could do more; wishing I could shoulder some of his burden.  All I can offer is company and love.  It never feels like enough.  I come from a family of doctors and lawyers and the higher educated; I am the artist, the freak, the black sheep, the blind girl.  Artists don’t read medical charts, freaks get frightened sidelong glances, black sheep never get heard and blind girls can’t show up at a moments notice.  But, I am also a sister. Sisters can comfort and reminisce, chat and laugh and get the inside jokes, share the childhood baggage, and simply listen. I savor every precious moment when it is just my brother and me.

But every night when I leave the hospital I feel frightened and guilty.  I don’t want to leave him alone.  I don’t want him to feel afraid.  I don’t want him to be sick.  My heart is breaking.

As I get older and my friends are traveling more and needing rides to the airport or wanting to go out to new and far off restaurants, I hate that I can’t ever be the one to offer the ride or step into the role of designated driver.  I sometimes end up  feeling like such a burden on my friends and it seems that all I am good for is a chat and a shoulder to cry on.  I want to be the friend who can be depended on for a ride or a rescue and instead I am always the one needing the ride or the rescue.  Maybe if I lived in more of a walking city or town, the field would seem a bit more leveled, but as it stands I simply feel as if I am not keeping up my end of friendships. I want to be the friend who can participate equally in everything.  I will never be that friend.

As a wife, it hits me the hardest.  My husband had surgery last year and it was devastating for me that I couldn’t take him or pick him up.  He had to rely on his brother while I waited at home for him to come back with bandaged knee.  It made me feel so inadequate, so useless. I can’t run out to the store in the middle of the day if it isn’t in walking distance, so he gets burdened with having to do all of our errands with me on his days off. I want to be the wife who can pick my husband up at the airport or run out to the market to get him a treat late at night. I will never be that wife.

This year, my brother was diagnosed with cancer and has had hospital stays and numerous doctors appointments and chemotherapy sessions, all of which I could have taken him to if I didn’t have RP. I could have visited him at the hospital any time without having to burden my husband or parents with giving me lifts.  This also makes me feel utterly useless as a daughter.  My father and stepmother aren’t young and frankly my stepmother really shouldn’t be driving at all, but they have been driving back and forth across town with frequency over the past few months.  If I wasn’t losing my vision, I could relieve them of some of the driving responsibility, but instead I prove to be a burden myself.  I want to be the sister and the daughter who can be there in a crisis and help out in every way.  I will never be that sister, that daughter.

Before the RP, I considered myself to be such an independent person.  I went where I wanted when I wanted and I could be there at the ready for the people in my life, little black hatchback in tow.  I try to maintain as much independence as possible now, but let’s face it, life without a driver’s license in Los Angeles can leave you feeling stranded and sometimes a bit worthless to those you love. I want to be able to visit my mom’s grave when I am missing her or drive to a reunion with old friends.  I want to be a person whose life doesn’t have to be planned around their disease.  I will never be that person.

He stomped up the steps, dressed as if he were going to a BBQ; khaki shorts and a dark blue Hawaiian shirt, worn white tennis shoes with blue trim,  and less than crisp white socks. He was tall and looked unsteady. He had on headphones and held an old-fashioned Walkman under his arm, while fumbling to count the correct change for the bus driver.  It became quickly clear that he was having trouble with the calculations due to being completely engrossed in the song he was listening to and insisted on singing.  I think it may have been Jump by Van Halen, but it was hard to tell because Mr. Hawaiian shirt was slurring more than singing really.  He finally managed to pay the fare and when he turned the corner there was no mistaking the boozie smell radiating from his song laden lips.  I looked down at the floor praying he would walk to the back of the bus and leave me in peace.  Thanks to Van Halen, he didn’t even pause but danced down the aisle straight for some poor unsuspecting students too cool to sit at the front of the bus.

Relieved, I leaned back in my seat and relaxed to listen to the concert; he was grooving pretty hard and singing so loud he was impossible to ignore.  He kept up his sing-muttering through three or four stops, as the bus started to clear out, and then crash; a spastic dance move caused his Walkman to fall to the ground and break apart.  Terrific, I thought, the damn bus is clearing out and he is going to start looking for a new distraction now that Van Halen has left the bus with all the students and most of the elderly.  He headed for the front.

I could feel his eyes on me.  I am pretty heavily tattooed and although I usually wear clothes to conceal the artwork and avoid unwanted attention, it was a hot afternoon and I had chosen to bare my arms.  Big fucking mistake. He was heading right for me.  He crashed down into a seat across from me, barely able to steady himself and I just kept looking at the floor or out the window or at the bus driver; anywhere but in the direction of Mr. Wasted BBQ.  There was only one stop between me and freedom.  I could hear him sucking on his cheeks and licking sloppy lips, trying to find world to hurl at me. I reached up to ring the bell for the next stop.  Almost free.  Almost.

“Hey, nice tattoos.  I said, nice flower tattoo”.

I stood up to head for the door.

“Do you read the bible?  Hunh?  Do you?”

The bus was coming to a stop and Preacher man was struggling to get out of his seat to follow me.

“The bible says that tattoos come from the devil.  You come from the devil”

I shot out the door like lightning and the driver closed it behind me before the man could follow me off.  I turned to give the driver a grateful look.  Mr. Hawaiian shirt glared at me from the dusty window.  I ran to catch my second bus.

The loss of the ability to read was my first fear after being diagnosed with RP.  I have been blessed, thus far, with a very slowly progressing case of the disease, but there have already been changes in the ways and conditions in which I am able to read.  I used to love to read on the bus; it was a great way to pass the time and a deterrent for some of the nut jobs that feel the need to chat.  As my vision has gotten worse and my prescription subsequently stronger and my light sensitivity impossibly extreme, reading on the bus during the day is no longer an option.  I can’t read with my glasses on because they are distance glasses ( it really is a crazy strong prescription) and I can’t take my glasses off because I can’t bear the exposure of my naked eyes to the sun. I also can’t text, write or see anything on my cell phone. If I can’t feign sleep,  I am fodder for the crazy chatter.

I used to be able to read anywhere for any length of time; reading for hours has always been one of my favorite pastimes.  Now, I can only read if the light is just right because I can’t see in darkness or brightness.  Also, the actual text has to be big enough, or the strain of trying to focus on the page is so exhausting, I am only good for about five minutes.  I will admit that I tend to overdo it and end up with aching eyes that can only be soothed by a dark room and some cold compresses.

As far as reading on the computer, this was where the changes first reared their wicked heads.  The glare of the screen, coupled with the effort of focusing on the letters and words, is a pain fest waiting to happen.  So, I have learned to take frequent breaks and never try to read documents that are too lengthy; those get printed out so I can read them the old-fashioned way and  I print all my own work to do edits and re-writes on paper.  I know there is no iPad in my future because I will never be able to read a whole book with the bright white screen  taunting me, but that is ok because I am still in love with real books.

So, I adjust and try to ride with the changes in my vision that force the changes in my habits and although I still feel afraid of the day when I won’t be able to see the words, I will read and read until the darkness has taken me completely.

John has always been one of the smartest and sweetest people I have known, but he is also the person who taught me what it means to be truly strong in the face of adversity.  From the time he was a little boy, my brother has been faced with more challenges than you would imagine anyone could handle. He has had too many rare illnesses to mention and through every battle he manages to stay positive.  He keeps his sense of humor and he soldiers on no matter what.  And he survives.

When I was diagnosed with RP, I thought about John and how strong he has remained through all of his hospital stays and mystery illnesses.  I looked to his example to help me weather the storm of the unknown that is RP.  I feel blessed to have him for a brother and so grateful for the strength and support that he has given me.  In the moments when I have felt so alone with my RP and so misunderstood, I have always been able to turn to him knowing that he get’s it….and then some.

I love you big brother.

I stayed in the dark for what felt like hours; eyes shut tight and mind racing.  I was so afraid to open my eyes to that demolishing light; so afraid that this time the change would be permanent.  I imagined having to adopt my sunglasses as a full-time appendage rather than just a means of fashionable protection from the sun.  I wondered if I could get used to watching the television or reading with half the images distorted and burned white.  I wasn’t ready to face such a blatant change to my vision; the distortion was somehow so much more terrifying than the darkness.  In darkness I can hide, but in the bright distortion I felt impaled and vulnerable.  Trapped.

I knew I would have to open my eyes sometime; face whatever reality waited for me.  My husband was texting me from work.  I had to answer him.  I rolled over and grasped for my phone on the side table.  I opened my eyes.  My gorgeous blurry room had returned to normal.  The tears poured down my cheeks.