Fruit

I think its interesting how your taste buds change as you get older. I have never been a very good fruit eater. I like bananas and I like cantaloupe and watermelon, but I don't eat any fruit consistently. On a rare occasion I'll eat a few strawberries. I seriously disliked orange juice and oranges. I would eat fruit cocktail as a kid but that was about it. And I thought it was gross to eat fruit with protein like chicken or fish.

Now I find myself experimenting a bit more with food, including fruit. I really like orange juice now. Last night I ate tuna salad with a small bowl of canned peaches on the side...and it was good! I really liked the combination of flavors, the saltiness of the tuna with the sweetness of the peaches.

Did I just sound like a judge on "Top Chef"? LOL

A silly thing to blog about? Perhaps. But I'm trying to be more consistent with my blogging. To share my thoughts and observations - about everything from politics to food, and stuff in between. :)

Not a very thought-provoking post, I agree. But did it make you hungry? :)

librarianintx

Writing

http://www.bloggersunite.org/event/people-first-empowering-people-with-disabilities

BloggersUnite had asked for bloggers and writers to make a commitment to blog on Saturday, July 24th. The goal was to raise awareness about persons with disabilities, two days before the twentieth anniversary of the Americans with Disabilities Act.

I received a message through Facebook, so I went to the BloggersUnite web site, and signed up to participate.

But I didn't blog that day.
And I didn't blog the next day either.

I am embarassed to say that I have not blogged since May 24th. Even though I endeavor to blog at least a few times per week.

I keep a handwritten journal as well. As much as I like computers, my first love will always be archiving my thoughts using pen and paper. It is the only craft I partake in, since I have no artisitic ability, no affinity for music, and my eyesight no longer allows me to do needlework. I do feel guilty that trees are dying to support my addiction, but I must admit that purchasing or receiving a new journal affords me quite an exceptional high. Obviously its not such a bad thing to be hooked on, but I often have to avoid the office and educational supplies section of stores like HEB or Target. Back to School displays are especially dangerous. And lets not even discuss the "fine art of writing" materials at Barnes and Noble. Ornate journals almost too lovely to write in, beautiful pens in assorted colors, have I mentioned the delicate stationery and decorated boxes of notecards in assorted designs?

....deep breath

But I have not written in my journal as much as I'd like to, either.

And why?

Two reasons mainly, one practical, and one emotional.

The practical reason is pure and simple: time.

I have been raised to always compare my life to others, and therefore find myself lacking, so I am a natural at the sport. An example: A friend of mine is raising four children. Yes, he has a partner. No, he does not have a disability. Yes, he has two months off in the summer because he works at a school. Anyway, he arises at some ridiculous hour (4 am? 5 am?) and works out a gym. He tends a garden in his backyard. He actually uses those vegetables in recipes he creates. He performs in local theatre productions, and devotes time to auditioning and rehearsing for aforementioned projects.

I only work half time. No husband, no children. I have a cat, but other than trying to trip me in her quest to reach the refrigerator before me, because I MUST be on a course there with the sole intention of feeding her, she does not ask too much of me otherwise. I just have to keep in mind that the bed is more hers than mine, and if I leave my shoes on the floor that is considered an invitation for her to chew on them. As are my bare feet when they're outside the covers at any time during the night. Since I am sleeping on HER bed, after all. She, Goldie Locks. Me, baby bear.

But instead of blogging or journaling, my weekdays are spent travelling to and from work using the city's paratransit service. Let me see if I can succinctly describe my daily commute. Okay, here we go: one word. LONG. Hours spent, usually in the backseat, of converted police cars. There are no headrests in the backseat of cop cars. Does the police department care about the comfort of alleged criminals? No, and apparently the city's paratransit service doesn't either. Every day I have an important decision to make: try to hold my head up, risking a sore neck and abdominal muscles, or choose to go for the lean and try not look like I've slipped into a coma. The car is much preferable to the paratransit bus, however. I compare those rides to something you'd expereience at a theme park, a carnival, or maybe a bucking bronco at a rodeo. As long as I hold on for dear life to the seat ahead of me and beg the driver to go slow over speed bumps and road humps, I can usually make it to my destination without wondering if I've damaged any vertebrae.

Once I get home, my afternoon and evenings (and some weekends) are usually spent taking care of the daily household duties that my personal care attendant has been hired to do. In the roughly five months that this particular person has been working for me, she has been to the emergency room, one of her five children has been to the emergency room, her other clients have had emergencies, her mother has had an emergency, she has been in more than one car accident, she has run out of gas multiple times...and it has been raining. Not like a tornado or something like that. Just...raining. Even when she does decide to grace me with her presence, she apparently has her clocks set to pacific instead of central time, since our meeting time is three o'clock and she usually arrives around five.

So often there isn't enough physical and mental energy left for writing after the chores are completed. Energy and hours in the day.

So those are the practical reasons for my lapses in writing. I have other excuses too, like the daily phone and web cam chats with my mother, and the barrage of television shows, movies, and music that my entertainment-addicted housemate lures me into. The newest is a BBC show about three roommates who appear human, but in reality they are a vampire, a wherewolf, and a ghost. Ok, I know, but its actually good! Although I guess I shouldn’t use the phrase “in reality.” Even reality shows aren’t real.

But I digress. Moving on to the emotional component. Back to the competition thing (refer to page _ , paragraph _ , section _ ) I'm not good enough. My writing isn't good enough. Why bother? What's the point?

When I think of other people writing, I envision a scene from a romance novel or movie. A beautiful girl with long, flowing hair, in a flowing skirt, sitting on a mountain watching the sun rise (or set, I'm not picky on that detail), a serene look on her face, gliding her pen smoothly over the paper as she writes for hours without pause. Contrast that to how I (and probably many other people) write: in fits and starts, either with wads of paper on the floor and pens thrown across the room, or banging on the keyboard in frustration, howling as I pace the room, and disentagling the strands of hair from my fingers that I've pulled from my head....

Mmmmm...if they ever need a female wherewolf character for that show, I should audition. Except they'd have to hire a voiceover to do the actual howling. Not enough lung capacity.

My journey from childhood where my disability was ignored to present day life as an openly physically-challenged individual continues to evolve. The reasons for the denial are numerous and complex. My father was also affected by the neuromuscular disorder, but was not diagnosed until I was. I was sixteen months old; he was thirty-two.

No one can say I was adopted. Well, my older and only sister tried the baby in a basket on the doorstep story, but I knew it wasn't true. I have always been the female version of my father. Same long, thin face. Same ears - huge. Same sense of humor. Similar limitations.

My father worked long hours managing a jewelry store. His job necessitated moving the family four times in less than ten years. He didn't like vegetables, avoided going to the doctor, and stood for hours each day on leg muscles that weren't strong enough.

In the last image I have of my father, he is sitting at the dining room table, weak and shaking. He has been ill for a few days. My mother hands him a glass of orange juice, but he can't hold it. The glass falls, but does not break, as some of the liquid spreads out on the chocolate-colored carpet. My sister and I are hurried out the front door and off to school. By the next afternoon he is dead of a massive heart attack.

He was forty one years old.
I was nine.

Was my father's death the reason that my mother couldn't even utter the name of my condition until I was in my middle teens, and the accompanying conditions of severe scoliosis and malformed jaws necessitated two major surgeries in the span of three months? Or did the ostrich-like behavior (head in the sand) begin with my father and was simply continued after his death? Was it guilt on the part of my parents, because they knew there was something physically wrong with my dad and they never attempted to investigate? Why did they turn a blind eye to a possible genetic disorder?

I probably will never have an answer to my questions. My grandparents and my father are gone, and my mother has a very difficult time speaking about such matters. She only told me about three years ago that her father died of melanoma. Which of course makes my sister, myself, and my mother at higher risk for the deadly form of cancer. Would have been a good idea to know this, and to take more precautions, such as preventing the significant sunburns I had as a child.

Many people with disabilities talk about the societal struggles they've faced, dealing with mainstreaming in school, lack of friends, social isolation, bullying, employment problems, etc. But my struggles have been more familial rather than societal. Sure, I got teased as a child. I was always the smallest student, I had short, kinky brown hair, and an overbite of Grand Canyon proportions. Dodgeball and Red Rover are nightmares I don't want to re-visit. I rode a bicycle with training wheels until I was in the fifth grade, when I finally gave up on the dream of one day having enough strength and balance to ride a two wheeler. I had guys in high school pretend to ask me out, then laugh themselves silly, believing that I thought they were serious.

I knew they weren't.

And yes, I have had society-based frustrations, transportation and attendant care being the major ones. But by far my greatest journey has been accepting myself as a person with a disability, and learning to overcome both the denial of my immediate family and the hopefully unintentionally insensitive comments expressed by my extended family. Questions like, "When are you going to get a real job?" when I had been employed for several years in the professional, albeit half-time librarian position that I still hold today. Or "You should eat a banana every day" - this uttered by the well-meaning, clueless uncle who has been convinced since I was sixteen years old that my uber thin frame is due to anorexia.

Its very difficult to write about family, to expose these hurts and tell these stories. It was hard the first time I had pains in my chest that resembled pleurisy and my mother told me I was just nervous. I was amazed that when my brother in law's recklessness caused my foot to be run over by my own wheelchair, a security guard saw me crying and came over to inquire as my brother in law, sister, and mother all stood there laughing. Isolated incidents? Unfortunately, no.

Does my family love me? Without a doubt, yes. Do they understand me - my needs, my desires, my viewpoints - no.

I just finished reading a book called Thicker Than Water; it is a collection of essays written by adult siblings of people with disabilities. I have no idea what my sister would say if she contributed a chapter. My sister doesn't communicate her feelings to me, about anything. I am pretty much invisible to her most of the time. It hasn't always been that way. We never shared a room, but there were summer nights growing up when I would sleep in her twin bed and we would giggle long into the night. I don't know what happened to us, and I'm not sure she would be able to articulate a reason for her distance. Its probably complicated, but that's as far as I'm willing to speculate. Somehow I remain hopeful that our relationship could improve. Its never too late.

I think a big part of my optimism stems from the three daughters she and my brother in law have raised. For all the turbulence and lack of care I have often faced in their presence, I have received nothing less than complete acceptance and love by their children. One day I was complaining about how terrible my teeth looked in a picture. My youngest niece said to me, "I like your teeth. They are a part of who you are."

She was twelve years old at the time.

I aspire to be as intelligent, resilient, and capable as they are.

I worry that anyone who reads this will view my words as a pity party. Poor me, look at what I've been through. I hope you can believe me when I say that I am grateful. Grateful for the people in my life, grateful for the life I've been able to carve for myself, grateful for the independence that I've been able to achieve. I have amazing role models. My BFF is a woman who has the same disability I do. She escaped a life of true familial neglect that nearly took her life. She moved halfway across the country on her own, has been employed full time for twenty years, and is happily married to her college sweetheart. She is one of the strongest and bravest people I know, and her example has helped shape my destiny.

Every day I endeavor to practice resiliency, experience happiness, learn, grow, DO.

librarianintx