MindPoints

When I first began thinking of seriously keeping a blog, I wanted it to be a public blog, because, as a person with a disability, I feel I have a lot to say about this messed up world we live in, and how it treats people with disabilities of all kinds.

Somewhere between the thinking about keeping a blog and the actual KEEPING the blog, I got scared of putting all of my warts on display.  I have a LOT of shortcomings.  I have a LOT of faults.  I have a LOT of imperfections.  One such imperfection is my body, physically speaking.  In MY mind, MY body is defective.  When my brother died unexpectedly in '04, I went through a period in my life where I felt my parents drew the short straw when it came to their kids.  I remember telling Angela one time that I felt like "defective goods".

I just read another blog entry by Heather, and in one of her latest blog entries, she talks about the bad times that are, well, inevitable, as a person living with cancer.  People have bad days... days where they don't want to get out of bed... days where they just want to say "Fuck this... I want to die!"... days where they, like me, get angry with their imperfect bodies and hate the life they've been given to live.

Having said that, MY particular problems with my body are difficult to talk about... let alone read about.  I understand totally that everybody has free will and can make the choice by themselves and for themselves whether to read something or not.  I wish that there were some sort of "code" I could speak in so that people understood what I was saying without my having to be graphic, or blunt.  Like I said, I totally understand that it is your choice whether to read my blog or not, but I don't want to write something that will disturb someone to the point that they may become physically ill while reading my blog, and given some of my physical problems, I am afraid that that will happen sometime down the road.

I was born with Spina Bifida.  Spina Bifida (or SB) has been explained to me in this particular way, and this is the way I've always explained it to people:  to picture SB, you have to think of a developing fetus' spine as a zipper.  With SB, there is a "snag", if you will, in the teeth of the zipper, and a hole in the spine occurs, much like you have an opening in a jacket if a zipper doesn't close right (say the teeth of the zipper don't line up evenly, and the zipper goes all kiddywhompus). 

Now, there are three forms of SB, the first of which is SB Occulta, in which there is just a deformity in the bones of the spine.  There are a lot of people who may have this form of SB and they don't even realize it.  It often times will feel like a "bad back" (because it is a "bad back") that is often times sore and painful.

Let me just stop for a second and say this... THERE IS NO CURE FOR SPINA BIFIDA ONCE YOU HAVE BEEN BORN WITH IT.

The second form of SB is Spina Bifida Meningecele.  When SB Meningecele occurs, there is basically a sac over the opening in the spine that is filled with cerebro-spinal fluid, or CSF.  The hole is surgically repaired/closed, and there is very little to no involvement of the spinal cord.

The THIRD and LAST form of SB is called Myelomeningecele, which is the form of SB I was born with in the early 1970's.  With this form of SB, there is a sac over the opening in the spine, and the sac contains CSF AND the spinal cord protrudes out of the opening in the spine and is contained within the sac.  Frequently, if a baby is born with myelomeningecele, there will be lasting damage to the spinal cord when the opening in the back is closed and the spinal cord is surgically placed back in alignment with the rest of the spine.  The missing vertebrae in such a scenario remain nonexistent and there is a gap in the spinal column where the SB lesion occurs.  It's been a while since I was told where my lesion is, but I believe it is at L-3/L-4.

When I was in my mid-20's, I had a surgical procedure done called a cystoplasty.  During the actual procedure, the operating physician sliced through a crucial, much needed part of my large intestine, giving me serious GI problems as a result.

I trudged through life pretty independently after my cystoplasty, but now that I'm in my late-30's, I have significant health issues that need more care and attention than I am able to take care of independently, and have lived for the last two years in an assisted living facility (which I refer to in my writing as ALF).

 

Here's more about me...

 

Birthplace:

Upstate New York

 

Current Residence:

Wisconsin

 

Favorite Movies:

Philadelphia, When Harry Met Sally, Apollo 13, Rent, Mr. Holland's Opus, Titanic, Born on the Fourth of July, Platoon, It's a Wonderful Life, The Lord of the Rings Trilogy, Star Wars Trilogy, Sweet November, Forrest Gump, The Perfect Storm, St. Elmo's Fire... Ummm...

 

Currently Reading:

Legion, by William Peter Blatty, author of The Exorcist... The Bible... The Hobbit... Writing to Heal the Soul... Ummm...

 

Favorite Board Game:

Life, Monopoly, Payday

 

Favorite Smells:

Pine, Cedar, Cinnamon, Jasmine, Musk, Patchouli, Campfires, Rainstorms, Freshly baked chocolate chip cookies... Ummm...

 

Worst Feeling In The World:

The feeling I get after hurting someone's feelings

 

The first thing I think of when I get up in the morning:

"Ugh... you mean I gotta get up NOW???"

 

What is important in life?

Family, friends, health, loyalty, faith, honesty

 

Favorite Foods:

Fast food cheeseburgers, french fries, chocolate chip cookies, pizza, lefse, chocolate, potato chips, donuts, macaroni and cheese, hot dogs, grilled cheese sandwiches, french toast... Ummm...

 

Chocolate or Vanilla?

Chocolate

 

Storms... Cool, or Scary?

VERY cool!!!

 

My Zodiac sign is:

Libra

 

If I could have any job in the world, it would be...

Police Officer, Firefighter, or stay-at-home Dad

 

Favorite Number:

3

 

Favorite sport to watch:

Football

 

Favorite Television Shows:

The Practice, Gilmore Girls, The West Wing, Felicity, Grey's Anatomy, One Life To Live, As The World Turns, Guiding Light, General Hospital, M*A*S*H, Mad About You, Dawson's Creek, LA Law, JAG, Providence, Picket Fences, Roseanne, Star Trek: The Next Generation, Star Trek: Voyager, Third Watch, The Wonder Years, All In The Family, The Jeffersons, Alice, Barney Miller... Ummm...

 

What book had the biggest impact on your life?

Jonathan Livingston Seagull

 

Brothers and sisters:

2 brothers, 1 sister

 

Liberal or Conservative?

Liberal

 

Pro-life or pro-choice?

Pro-choice

 

In my opinion Dubya is:

A narcissistic imbecile

 

Favorite soda:

Diet Pepsi