True story. In 1990 I was in the hospital for 3 months with ulcer problems like now. The ward I stayed on had 60 patients divided into 3 sections. 1 day I had a stomach ache that the staff knew about. There was a substitute tech in my section. A little to big for himself, he said, “Ha Ha I’ve been on the ward 30 minutes and read all 20 patients records. I know what’s going on!” I’m thinking it took you 30 minuted to figure out how to pronounce myelomeningocele. (The type of spina bifida I have.) I buzzed for attention. They “Ok Big shot go see what Miss Meyer wants.” He came to my room and asked how he may help. I said, “I’m in labor” HE FAINTED!!!! I buzzed again and explained what happened. Everybody and a crash cart came!

Advertisements

Mischief & Medicine

 Being stuck in a hospital can be frightening, confusing, and fun. Yes, I said fun. In the middle of needles, rubbing alcohol, and blood, the young patient learns new and interesting ways to entertain himself. The patient will also find ways to get into as much trouble as he possibly can. What I’m writing about here is just a few days of this fear and silliness. It was April 1978 and I was going in for surgery on my lower legs which were corkscrewed. I got settled in and met the kids in my corner of the room. Across from me was Bill, he outgrew his prosthetic foot and needed a new one. Next to Bill was Beth, she had a bone condition and needed to try new medicine. Next to me was Mike, he needed hip surgery. None of us was really sick, we just needed some fixing. We were healthy enough to drive the nurses crazy! They were a bunch of no-nonsense biddies. After they dealt with me, it was time for lunch, I had steak, potatoes, salad and pudding. After more getting aquainted and another meal, it was bedtime. Bedtime in a hospital can be scarier than the surgery. My trick is to look out the window, see the lights moving around and imagine they’re falling stars. The next day it was Bill that started the mischief. He sucked up a piece of ice to the end of his straw and blew it out at me. Pretty soon we were all doing it. We went on doing stuff like that all day. That evening, my roommates were still pelting me. My surgery was the next day, so I asked them to stop. When they didn’t I let the baby powder fly! I did not see the nurse right in front of me, oops! They took me in for surgery at 8 am and didn’t let my parents know how I was doing until 2 pm. When I got out, Mom’s hair was white and Dad’s was falling out. In my room I got more “love” from my roommates. That night I felt well enough to participate in the airplane contest. The winning airplane went down the hall, and landed in my Doctor’s freshly poured cup of coffee. I was glad my surgery was that morning. The next day was my 12th birthday. I don’t remember the cake, but my presents were, a blue t-shirt with a picture of Shaun Cassidy on it, a blip game, Hardy Boys book, flowers, candy and a plate from my roommates. In the days that followed,I got an uncontrollable infection which was caused by a blood disease. They fixed it with a transfusion and a low-tech breathing machine. My roommates saw me as defenseless and I got wet! When Mom left that evening, she tried to give me quarters for the phone, I told her I had plenty because as per doctor’s orders I charged people for signing my casts. Embarrassed, she was ready to kill someone in a white coat. So you see, to survive chronic hospitalizations, you need an imagination and a sense of humor.

Dealing with all kinds.

I know I said next phase but I feel like doing this today.

The very existence of a challenged person can bring out the absolute weird in people. I get people are basically kind and have good intentions and I try to take people from where their hearts are.  There enlies some challenge, to my personal rules, character, sanity.

I was taught ‘Be Tolerant, they don’t know any better, make allowances for people’.  “AAAAAAAAAAAARRRGG!!”

I will now tell you some things.  Some of it will be funny, it’s ok to laugh.

When I was too young to use wit and wisdom I used my crutches. Bullies would hit me in the head with things especially when I wasn’t wearing my helmet. One day I hit back and that solved the problem. We’re friends now.

There are those who are of the opinion that my need for a wheelchair makes me mentally challenged.

At a family funeral a relative asked where I was from, I said Texas. he said.”Did you have to get a visa. I said we used our mastercard!  His mouth hung open for an hour.

The morning of a relative’s wedding, a couple of cousins and I went shopping.  After pulling into the parking space, I opened the door as wide as I could for the wheelchair.  The woman next to us saw all this and said she wanted to make sure I didn’t scratch her car with my wheelchair!  I WANTED TO KEY HER CAR!  After reminding me that vandalism is a crime, my cousin said, “If you don’t key her car and just let it go, you have the satisfaction of knowing you’re the better person.”

Picking up a relative at the airport, I approached the security check in my used up, customized, well-worn wheelchair. Three male security guards told me to walk through. I said, “If I could, I wouldn’t be stuck in this ‘dang’ wheelchair!”

Rolling to a fair after a parade, no sidewalks so I was in the street. A woman thought it would be funny to chase me in her car to see how fast I could go in my chair. Well, I won’t go into verbage here. Let’s just say, I don’t appreciate it when someone tries to kill me and thinks it’s funny!

Want to see the funniest wrestling match ever? Sit in a wheelchair at the food court of any mall during Christmas season. The Jesus freaks will fall all over themselves to try to get to you first to pray on your head!

Random: “Can you walk?” “Umm”.  “Were you born with birth defects?” “Ummmmm”.  “Wow! You’re actually smart!”  “GRRRRRRR!”

“Have you ever considerd suicide?”  “No! Too many people know and love me!  More importantly I love myself!”

“You know you’re in a wheelchair, right?”  REALLY?!  Pointing to my head and heart, I said, “Ignore that, I’m all here and here!”

I couldn’t do things like everyone else, so I learned. So when someone treats me like I’m challenged, I properly use a big word and watch their reaction!

Personal rules:  Respect above all.  Don’t judge. Respect opinions, respect religion, beliefs. Be kind no matter how difficult. Love all. Don’t scare kids.

 

 

 

 

 

The Adventure Begins

I was born in Minot North Dakota on April 22, 1966. When I came out the look on the doctor’s face gave Mom cause for concern. She thought “What’s wrong and what can I do to help my daughter.”  I was born with a birth defect called spina bifida.  Specifically, lumbar 5 myelomeningocele. What that is is, my back was open at the fifth lumbar of my lower back resulting in some paralysis. My spinal cord was exposed with some nerves gathered at the end. After a quick baptism I was flown to Wilford Hall Hospital on Lackland Air Force Base in San Antonio Texas.  My parents were told don’t expect me to live. If I had lived I would be unable to walk, talk, eat, dress myself and take care of basic needs as well as be mentally challenged.  (I fooled them didn’t I!)

I shortly developed a condition common in people with spina bifida called hydrocephalus.  That is cerebral spinal fluid in the brain. A ventricular pulminary shunt was placed in the right side of my head to my heart to drain excess fluid. Unfortunately that didn’t work. My shunt clogged and I underwent a partial replacement at the age of two. They took the shunt out of my heart and moved it to my plural cavity. That resulted in my being deceased for four minutes!