Stranger: Stand Up Straight! WTHeck!

I've written many posts about encounters with rude, obnoxious,  and stupid people I share these for several reasons.

For you to think before you speak to others.
Don't judge others and if you don't have nothing nice to say, don't say it.
Regardless if you are "normal" or have a mental or physical defect, we all have feelings.
I want others to get a glimpse of what the disabled have to put up with nearly on a daily basis with strangers.

Some of the encounters seem so bizarre I sometimes think this can't be true although I know it really did. These are true life experiences.

I often wonder. I see myself as having a mild physical disability and have these frustrating encounters with people who strangers. I can't imagine what people with a severe disability and those in a wheelchair or other devices, etc go through.  What kind of BS they need to deal with?

I was telling MyMom about my recent encounter day before yesterday and she said people no longer have compassion or moral ethics. I just need to remember I'll probably won't ever see them ago and don't I dare let them get me down.

I hate when I am in the situation and I'm so shocked I can't think of a good comeback. I get flustered. And I hate the attention on ME in a public crowd setting like I was the other day.

It was a very short encounter but angered me nonetheless and I said something I'm not proud of it. I know it is no excuse but sometimes I just get ENOUGH! I'm tired of strangers being downright rude and insensitive. I don't want sympathy! I just want to be treated like a normal human being. Yes, my legs and speech are not deemed normal but I think I have a normal intelligence and I definitely have all the same feelings.

My mom always said I sadly have to try to educate people. Why is it my responsibility to teach total strangers about why I do this or that? I really would not mind if they came to me discreetly and inquire in a respectful manner. But when they are loud and obnoxious I feel there is NO way in getting through to them.

Enough of my rant. Here's the story.

I was standing in a check-out line at the dreaded Wallyworld.  A 20-something white male prances towards me.  As he passed me he paused. Then he leaned over totally intruding on my personal space. I took a step back thinking what the heck? I really wished I had a stun gun or mace because I would have certainly used it.

Then in a booming voice he commanded, "STAND UP STRAIGHT!"

For a few seconds I looked at him. I thought, 'Oh Noooo, he did not! Did he? I was trying to figure out if he was joking or being stupid. Once again, I wanted to give him the benefit of the doubt so I responded, "Excuse me?"

He turns around and sarcastically said, "You heard me! F--King STAND UP straight!"

I wondered who this person was or rather who he THOUGHT he was.

I instantly became angry! And asked, "What is it to you? You don't know me!"

Although only a few people were watching, I felt like the whole store was watching uncomfortably.

He wickedly laughed, "Just stand up straight!"

Something told me even if I did try to educate him it would be for nothing. At that point, I just wanted him to leave me alone

I murmured, "Go away!".

He laughed and repeated, "F--king stand up straight!"

It is not the proudest moment but I had enough. I wanted to cry from frustration and embarrassment but I dare NOT show him. I yelled, "Get the f--k away from me!"

Calmer and lower he said, "Just stand up straight"

I answered making angry eye contact, "F--K YOU!" People started talking to each other looking at him.

He finally backed down laughing and walked away, ATTEMPTING To imitate the way I walked. Why do people feel the need to mimic something they are making fun of? It makes NO sense. When I was a child I used to wish lightning would strike and make them walk like that for the rest of their life. But as I got older I sorta feel sorry for them. I don't know why.

Anyway, I just turned away and it was finally my turn to check out.

The cashier and a few others apologized for the moron. I told them no apology necessary because it was not them. A man said, "You're a strong young lady taking his BS." I thanked him.

Some said I should be proud because I held my own.

But I did not hold my own, I stooped to his level with the cursing. I do not know what his problem was. I don't know what made him zero in on me but I rather him focus on me then the  elderly lady in a wheelchair behind me or anyone else.

It was cruel.

On my way home I kept playing the whole scenario over and over. I asked God to forgive me for stooping to the young boy's level. I asked God to help me understand people like that and for forgiveness for wanting to punch the boy's lights out.

Later that evening after relating my experience to MyHubby, he said the boy was lucky it was me. As much as we've been hearing on the news how people get ticked off, leaves and returns with a gun and kills or just brings out a gun, the guy is lucky I was not one of those people. He is right.

I've encountered morons for this young boy is a totally new breed.

If you would be me in that encounter how do you THINK you would react?

I hope all of you Mothers (and Dads who step in the role) have a wonderful Mother's Day.

Until Next Time…

Cerebral Palsy Awareness Month: Disability Etiquette

It is the end of Cerebral Palsy Awareness Month. I pondered what I wanted to say on the last post about this month. 

You know how hard it is for me to get into a rhythm of writing, much less on ONE subject.

I want to give you some pointers on Disability Etiquette. They are generally the same rules as for good etiquette in society.

Remember we (People with any disability) are human beings just like you. We have feelings. We go through challenges and triumphs just like you. We have family and friends just like you. We love just like you. We want to be understood just like you do.

Do NOT stare. TEACH your kids NOT to stare. It is rude. It is uncomfortable. Yes, you can look and be curious but after a few seconds turn your head. It can actually be hazardous to your health. I've seen so many people almost hit by cars, run into walls or other people because they were staring at me. I can tell you so many stories.

There is this one man in church. He sits in the back pew. Every time Hubby and I walk in, his eyes follow me from the time I enter the door until I sit down. I have stared him down a few times. You would think it would make him stop. I told Hubby one day I wanna stick my tongue at him. It's just a reaction. Sorry. But Hubby subtly reminds me I am in church.

If you are that curious ask them QUIETLY. "May I ask what your disability is?" Or as a child will yell, "Why do you walk like that". That is fine but DO NOT yell. It brings more attention then necessary like the Priest did to me. Most of us don't mind explaining. Remember to be tactful and discreet.

Do not come up to us and assume. I don't know how many times people have come up to me saying, "Oh poor child, you had Polio?' What kind of accident you were in? 99% of your assumptions are WRONG.

When talking to us, talk directly to US. If we have a spouse, aide or sign language interpreter, don't tell them what you want to tell us. We can hear and talk (or communicate in another way) for ourselves. 

Do NOT stare. I know I said this before but if you only remember one thing is this one.

If you offer assistance, wait until the offer is accepted. If we accept, listen to our need and help. Do not take over without being asked or asking.

Treat adults as adults. Don't use the tone you use for your children. It's aggravating. If the person is in a wheelchair (FYI to newcomers, I am not.) do not pat their heads in a patronizing way.

The last one I deal with nearly every day. Listen attentively when you are talking to a person trouble speaking or has a speech defect. Be PATIENT and don't interrupt until they finish, rather than correcting or speaking for the them. If necessary, ask them short answer questions or questions requiring only a nod. NEVER pretend you understand if you don't. You could miss on helluva lot! Repeat what you understand and allow them to respond.

I BEG you to listen carefully and try to understand. It is just as frustrating for us as it for you if you don't understand. We want you to understand and doing the best we can. 

These are the most important to ME. You can find more etiquette at these sites:

United Cerebral Palsy Ten Commandments of Etiquette

Community Resources For Independence

If you remember that those with a disability is a human being and treat them as such, it's a good start.

CP AWARENESS MONTH: AWESOME T-SHIRTS

I found some T-shirts on Zazzle.com. I was surprised MyHubby is wearing his. But shame on me because I know he supports me. And my shirt pretty much sums it up for me.

Cerebral Palsy Messed With The Wrong Chick

I wear Green for my wife and Cerebral Palsy Awareness

I think they are so cool!!

CP AWARENESS: PSYCHOLOGY REPORT II

Here's the second Psychology Report a year later from yesterday's post.

Again I'll translate:

Age: 6 years 6 months

Seen: New Iberia Health Unit
          Iberia Parish Unit
         5-12-69


I saw Lisa in April of 68 at which time she attained a Stanford-Binet I.Q. of 71. Another test was wanted to see if she had changed significantly and what class she should be placed in, whether she should attempt the regular class or be in a retarded class.

Lisa impresses me as rather formal and matter of fact without great feeling. She talks rather vaguely and her articulation problems make it quite difficult to understand her.  She is still a fairly scared child.


On the WISC Lisa attained a verbal IQ of 72 and a Performance I.Q. of 65. These scores are in the Borderline and Mildly Retarded ranges. The highest score seems to be the more accurate measure of her academic or school ability.

There are signs from testing and otherwise that the mother tends to keep expecting too much and pushing this girl some. Again I told her that she couldn't help Lisa's ability by doing this but could harm it some. I encouraged her to let Lisa do as much as she could, however.

Actually, this girl needs a slow learner class but that's not available. I think it's probably better to let this girl belong to the regular class and spend a year or two in each grade, rather than being in class where they are much lower and much rowdier.  Also regular classes are near her home and family would not have to drive an hour a day to make arrangements. I cautioned the mother that Lisa probably would fail every year or so and to emphasize on grades significantly. I think it would be good if Mrs Hebert reinforced this from time to time.

______
I passed every year as an average student. I went onto becoming a nurse. So much for being a slow learner.

With many years of speech therapy during my Elementary years my speech has improved significantly although I have trouble with saying a word. I call those times as having a CP brain fart.

 Once you get to know me, you usually get used to my speech. However, strangers have trouble sometimes. MyHubby tells me most of the time they are not listening exactly to what I am saying.

Case in point: The other day I was on the phone. I was saying my address and our street name is difficult for people to spell: Courtableau…signs like Core-tah-blah. I spelled it. She comes back with C-o-r-t-o-b-l-u. How did she miss u, got "o" out of a and totally missed ea is beyond me because I was saying it fairly slow. So I had to repeat using words "C as in Cat", etc.

My mom is my hero. She could tell I could do a lot more than the Psychologist implied. I sometimes wonder what would have happened if there was a slow learner class available. I think my Mom would have fought tooth and nail.

The  tone of the psychologist and the way he used mentally retarded makes me cringe.

It's funny! I think I express myself with very strong feelings just fine. I think many will agree.

I think as a child I was shy and I knew I was "different". Being evaluated by doctors and psychologists was intimidating to a little tot. Kids sense many things and maybe I sensed something with this psychologist so I clammed up.

I also wondered how the test was performed because how could he give me a score when he could not understand what I am saying?

Of course with my bad speech problems at the time, very few people took the time to try to listen and understand me. So I probably thought why bother to talk.

I have friends and family members say they forget I have Cerebral Palsy in any way, shape or form.
I love to hear that.

Thank you for the warm comments and encouraging words.

CP AWARENESS: 1st PSYCHOLOGY REPORT

Years ago, I received my records from the Crippled Children's Clinic in the local health unit. It was like a child on Christmas. I have read my records so many times. I'll share bits and pieces I think is interesting.

Here is a Psychology report  a psychologist wrote on me after examining me for the first time.The print may be too small so I have transcribed it below.  My second visit with him a year later was more interesting. I'll post that one in the next few days and I guarantee this will make you think. Every time I read them I think if I could visit this psychologist now and tell him he was wrong would be so cool



Age: 5 Years 6 months (My birthday)
Seen: 4-10-68
New Iberia Health Unit

Lisa is a Cerebral Palsy child and was referred to determine if she should start in regular school. Lisa is quite small and I found her too quiet and uneasy. She smiled a little too strongly as though fearful. I noticed minor articulation problems and baby speech. At times it was extremely difficult to understand what she said.

On the Stanford-Binet Lisa attained a mental age of 4 years 1 month for an IQ of 71in the borderline range. This is on the border between Dull, Normal and Mildly retarded. This means that she is not actually retarded but in the slow learner category. It would be good for her to be in a slow learner class if possible or start school a year or two late if no such special class is available. She could be in a Educable Retarded class as long as it contains young children.

I think the mother has done a reasonably good job with Lisa and there seems to be strong affection between the two. The mother, however, is a little too strict and compulsive in her general work with Lisa.  I think if she could to "loosen up" a little and allow Lisa more freedom in small ways, this might make her feel safer.  It might be a good to see mother and child again for 45 minutes a visit or two from now when we can find more time. I don't think it's real urgent, and if Mrs Hebert can encourage Mrs. Landry to loosen up some with Lisa, this may handle the problem.

______



My mom was strict with both of her girls. Mom said he evaluated me for about an hour putting me in a room with blocks.  She was so upset that she went to my Pediatrician and insisted this doctor was wrong! My Pediatrican, Dr. Halphen told my mom she knew me better than anyone else and just do what she has been doing.

I don't ever remember my Mom restricting me in doing anything. I NEVER felt unsafe. Maybe I knew I was different and didn't understand why being a young child so it made me unsure. Maybe I was afraid of him, a stranger.

I started school a year late not because of being "slow and borderline" retarded but because I had surgery.

Cerebral Palsy Awareness Month

March is Cerebral Palsy (CP) Awareness month.  I have Cerebral Palsy for in case you missed it in any of my posts or you are new to my blog.

Here are a few facts about Cerebral Palsy.

Cerebral Palsy is the most common motor disorder in children.

The symptoms and severity of CP varies from person to person.

Globally there is 17 million more people who have CP. .

Cerebral palsy is a life-long physical disability caused by damage of the brain, usually during pregnancy. I am one of may exceptions. My Mom said I acquired it at 6 months of age when I stopped breathing during when I had pneumonia but was not diagnosed until I was 2.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.

There are 4 types of Cerebral Palsy: Spastic, Athetoid, Ataxic and Mixed.

Spastic is characterized by muscle spasticity and permanent contractions. I have the muscle spasticity but no contractions.

Athetoid is characterized by slow uncontrolled writhing movements. Does not apply to me.

Ataxia is poor coordination and balance.

Mixed is combination of more than one. Obviously, I have this one.

There are many resources online that you can get more information. Here a few that I am using in addition to my knowledge.

Centers for Disease Control and Prevention.

American Academy for Cerebral Palsy and Developmental Medicine

United Cerebral Palsy

Fireflyfriends

Those of us with Cerebral Palsy often have an equal or better IQ than anyone else.

We (those of us with Cerebral Palsy) have the same life expectancy as those who don't have CP.

Most of us can walk. Some need assisting devices.

Some  of us have trouble communicating because we can't talk or have a speech defect. I think this is most frustrating. I know I can't pronounce some words and have that 'CP drawl". There are often times my brain can't figure out how to say the word offhand or pronounce it. Luckily I tell Hubby to say it and most times I can then pronounce the word. But there are other times, I just say, "Yea that's it!

My family and friends are used to the way I talk so they can understand me. Hubby laughs at the way I say things sometimes.  He thinks it is cute.

Talking to someone on the phone is the worse. It seems to me I am talking clearly but the other person is like, "Say that again" Or they repeat what they thought I said but it is all wrong. I tell Hubby that I understand I have a slight speech defect but c'mon its not that bad! He agrees and says people just don't listen but he also admits he had to listen closely when we first got together but now he is used to it.

If I am crying or upset and talk, forget it. Even my closest family can't understand me.

I probably could write a book about it but there are too many out there. So that is a summary of what Cerebral Palsy is and how it affects my life.

If you have any questions don't hesitate to ask. It won't offend me.

What I've Been Up to

Maybe some of you have been wondering where I have been. Actually, I know some of you are. I've received a few emails asking so I thought I would update.

I finally have my fungal foot problem controlled. It is not healed. It will take time, at least a year but I see signs of health and no more crazy symptoms that nearly drove me insane. 

I had mentioned that I wanted to do some volunteering. I have gone through the general training program for Hospice.  I thoroughly enjoyed it. I learned so much and there is so much more to learn. Everyone was so nice and helpful.

I had to take a Tb which was negative and now I'm waiting for my background check to come back.  After that I'll be ready to volunteer my services.

As I was listening to the different ways to volunteer I thought I could do this or that. My nursing urge kicked in big time. I just want to jump in and do it all! However, I know as I explore I'll find my niche!

It was amazing how many others wanted to be a volunteer. We were from many different areas. That's good because the Volunteer Coordinator, Mrs Ann tries her best to match the volunteer with a client that is in our parish, (Or county, as most of you say) if we decide to volunteer our services in that way. 

I met Mrs. Ann when I went apply a few months earlier. She is the most genuine nicest person I have ever met. Seriously!!!

I also signed up for ASL (American Sign Language). Actually about six months ago, I contacted the local Diocese who offers the class.  MyHubby decided to join me. I am excited he decided to join me.

We started last week. It is fun and I think it will be challenging for the next few weeks. It's a six or eight week class.  I know the basics for the most part such as the ABC's. Our teacher, Ms Katie showed me the proper way to do some signs as I've become sloppy throughout the years.

It is difficult for me to do some signs because of my spasticity of my hands. However, I am getting it for the most part. It was reassuring when some classmates had trouble doing some signs as well and they don't have Cerebral Palsy.  

I am not sure what I want to do with the ASL knowledge. I've always wanted to do some interpreting for the deaf but this course is just the beginning. I would have to get certified and that's a long road ahead and more extensive learning. We will see.

This weekend at our Mass, they announced that our church is trying to start a Come Lord Jesus program which I'm interested in. Not sure if I will join but will attend the first meeting for more information tonight.

There it is. That's what I have been up too.  Thanks for those who inquired about what I've been doing.

No Use Crying over spilled milk

I just read cpdad and it provoked an idea for a blog post.

He stated how he spilled milk and his loving daughter sweetly offered her help.

CP affects my coordination and I have the same problem with liquids. If I am carrying something with liquid I need to be careful because as I walk it splatters. As long as I don't have to walk a long ways I am okay.  I usually don't fill the container to the top.

If I am in a restaurant or someone else's home, and there is soup or gumbo served, I ask my Hubby to carry it for me. Yes, it is very hard to do and I feel like an invalid but I realize it is better to be embarrassed then be mortified if I'd try to carry it and it goes splattering all over the floor.

I remember when I was with my ex and either my child or I would spill something he would get upset. He would yell at us and tell us how wasteful it was. I would just tell him to get over it. I told him she was a young child and her motor skills were not developed yet and we all do make errors.

I didn't realize how it affected BabyGirl until I had left him and we were alone. One day she was pouring some milk. It went all over the floor and counter.  Yes this time was careless. But I saw the terror in her face. She froze. I just looked at her and said, "Oops, just clean it up!" I think I helped her too. She frantically apologized. I told her it was okay. I remember that deep sigh of relief.

Sometimes when I spill or drop stuff Hubby is like what happened? I just say I spilled. Sometimes he shook his head in exasperation until I told him the story about Babygirl with the spilled milk and it is what it is with me. He spills and drops things too. Maybe not as often but it's always been that way with me. I do try to be careful. I told him he just needs to live with it. It is the way I am. It's not like I like to drop or spill.

Next time you or your loved one spills something, remember that it is not that important.

People are So Ignorant, I Swear

I get an email to join spring.me which is….

I don't know what you would call it. People ask questions on any topic and others answer.

I was surfing through the questions and one hit me. I don't know if I am reading it wrong or taking it the wrong way but the question was 

"This is the handwriting of MiniNini (her name is Nina). We can all agree that she's either fucking retarded or has Cerebral Palsy. I haven't laughed at handwriting this much before."

Here is the picture:

My first thought was are you kidding me. 

I wanted to blast this person. BTW, they hid under the user name Anonymous.

The responses  of others were even more ridiculous and made no sense.

At least we know the writer was talking about science.

I had to refrain myself from writing a long response but then reconsidered. People like that really does not get it and I'd be wasting my time.

Instead I answered: 

I don't know who Nina is but what if she does have Cerebral Palsy or mental retarded? It is not funny and you are cruel. It shows how immature you and all the commenters are. And yes, I do have cerebral palsy. Lets just hope and pray no one you love acquires cerebral palsy by an accident.

I read or hear ignorance just about every day and learned to just let it all roll off my back. But there are those, like this, gets to me. I will think about it for the next few days to weeks and get angry all over again and wished I could just meet them face to face and have a long discussion about their ignorance and lack of compassion.  

Surprisingly, no one else responded to that question or my comment.

What have you read or seen that makes you angry and takes you a while to let it go? Am I overreacting?

Foot Pain Anxiety

During my move in January, I was on my feet a lot more than usual. Packing, loading cars, unloading cars, transporting our belongings to storage than back out into our new home and unpacking.

My feet hurt. They usually hurt when I am on them for a long period of time. After a rest I am fine. But this was different.

A few weeks later my weight bearing was off. Yes, my weight bearing is already off because of my cerebral palsy but this was different.  But I was still in denial.

I get up and instead of just taking a step like 'normal' I have to make a conscious effort to step and move. After a few steps I am fine. Also behind my left ankle started hurting. Just a dull pain, yet aggravating. Once I got off it, I was fine.

I continued to think it was just taking time to heal. The way I walk I tend to favor my right side with the weight bearing.

It is irritating and frustrating. Several months later, I visited my doctor for something else. I mentioned my problem. He said it might have been a strain and because of my CP (Cerebral Palsy) my ankles may be weakening. He told me to do some stretch exercises. He also gave me a fluid pill as my feet were swelling.

I did the exercises diligently. However, it made the problem worse.

My weight bearing still sucks royally. The pain is in back of my left ankle mostly. It is a burning sharp pain. The pain continues when I am off it so there is something not right.

I have piddled paddle around with this issue. I just didn't want to deal with it so I ignored it as much as I could.

I am finally coming to my senses and not to mention I am afraid I do more damage, if there is any damage. I need this taken care of.

I was not sure if I should go to a podiatrist or orthopedic.

I decided to start with a Podiatrist. When I think orthopedic I think surgery. I know probably unfounded but it is my thought process.

And I can always blame my crazy thought processes on my Cerebral Palsy. (HA! Hey it's my excuse!)

I called this well-known Podiatrist.  I'll call him Dr. B. He is on my Medicare insurance.

The lady asked me the regular questions, NAZ, age and insurance. She notified me that they do not take Medicare patients under 65. I thought that was weird. If I had another insurance they would.

I thought this was so wrong. I had friends on Facebook say it has to be illegal. I thought it was too. Discrimination at best.  But after calling Medicare, I learned unless they are accepting other new patients with only Medicare they can deny service.  There is no way to prove it either way.

I called another Podiatrist, the second best rated Podiatrist in this area by ratemds.com.  They gave me an appointment for tomorrow. That was pretty darn good considering they would have taken me the next day of my call but I had other things to do.

So I've been thinking about my appointment.

I'm nervous.

I am scared.

I keep thinking there is rarely anything simple with me medically.

My thoughts are:

How am I going to walk with a brace?  I know they are better made and won't be as bad as the big steel  stiff ones I had as a child.

What if he tells me to stay off it? Mind you I spend most of my time at home so it is not like I go all over the place. However, the fear of losing my independence sets in.

What if he wants me to go through physical therapy? Flashbacks of learning to walk after surgery with  rails dad made me and my mom moving my legs as I lay on that chest freezer as a child run through my mind.

I know I am thinking too much and hopefully imagining the worse. But arghh!

Having to deal with my few limitations of CP plus getting old just totally sucks!

But as my mom used to say,  it is what it is and I have to just deal with it.

I Fell and Was Able To Get Upi

I had been hunkered down in my home feeling like a leper. I have had sores in my hands, mouth and feet. I was miserable. I finally got a diagnosis last week, ridiculously unusual as always for me. Doc said I have Mouth, Foot and Hand infection. Gee whiz. He said its viral and I could have gotten it anywhere. And my autoimmune disorder doesn't help matters. He gave me an example that totally grossed my child and I.  It's for another post.

Feeling like the four walls closing in on me I decided to take a walk about 100 yards to my mail box the other day. Our home is on a rather busy highway so vehicles are passing by at intervals.  As I opened the mail box a truck whizzes by and a postcard flies out.

CRAP (In the PG version)!, I yelled. To no one.

Let me remind you my balance is not normal. A fly can swish by and it'll knock me off my feet.
Okay maybe not that bad...but its pretty close. A small breeze certainly can knock me off balance.

If I should fall, it is difficult to get up if I don't have anything to help pull myself up with

Anyway, the postcard flies across the driveway landing near the edge of the ditch. So I half run/half jog to it. When I get to it I put my foot on it and realize I am in a predicament. I knew if I bent down to pick it up and a vehicle passes there would be a high probability I would fall.  I was also at a slight decline because the ditch was behind me which makes the probability higher.

There was a pile of overgrown brush inches away. As I scoped the vicinity around me, I took note that there is NOTHING to use or crawl to pull myself up if I did fall.

The thought of letting it fly away entered my mind but I knew Hubby was waiting for it as it was a confirmation of an event he is attending. I know he would have totally understood if I told him.

In addition, we have a problem with people throwing trash out their cars landing in our yard so I didn't want to add to the other neighbors littered yard.

Side Note; Please don't litter. I don't care where you are or whatever but even the hamburger wrapper, beverage cans or cigarette butts adds up. Just do NOT throw anything out your window. Think how would you feel if I would go throw trash in YOUR yard.

Anyway...I decide to go for it. Took a deep breath and ...counted..1..2..3...

I bent and fumbled..but was able to catch my balance, stand up and stabilize. Second time I bent and grabbed it picking it up.

So good so far..

Just as I was straightening a truck whooshed by. I FALL hands first into the pile of brush!

Funny, my first reaction was to look around to see if anyone saw me. No one was around. Pride intact.

I thought, "I am screwed"...then I felt the pricks, it seemed when I moved my hand the thorns dug deeper but I knew I had to get up. It reminded me of allergy skin testing but worse.

I kept saying I can do this. I have to do this. It would be an hour before Hubby returned and of course I don't want to be humiliated with someone seeing me on the ground.

So I took another deep breath. Scanned the highway both ways. I was in the clear.  So fumbling more after a few seconds I finally pushed myself up, turned around and quickly stumbled towards the house  gaining my balance more as I moved away from the highway. I probably looked like a drunk person with my wide gait and fumbling at first.

On second thought, that's probably how I look like anyway..just 4 times worse.

Its been BabyGirl's worst fear with me falling in middle of somewheres with nothing to pull myself up.

But now I know with determination and pride mixed in I know if there is a will there is a way.

I Have The Gangsta and Pimp Walk Going on!

Throughout my life, my walk has been described many ways. I couldn't tell you every description but there were a few that ingrained in my memory.

I recall the doctors describing me as ataxic and spastic with a wide gait. Hence,diagnosis Mixed Cerebral palsy, which means a combo. ataxia and spastic.

Ataxic gait is defined as unsteady, uncoordinated walk, employing a wide base and the feet thrown out. It's a very accurate description except for the feet thrown out.  I don't throw my feet out, or I don't think I do. BabyGirl, her father and I had once came up with "I weeble wobble but don't fall down..most of the time.

Spastic: a gait in which the legs are held together and move in a stiff manner, the toes seeming to drag and catch. My legs are not held together in my opinion but I am stiff. But I do tend to drag my feet. I still hear my mom demanding, "Pick up your feet!" It was annoying and frustrating to me as a child but as an adult I can see that I could be dragging worse than I do now.

As a child, kids used to tease and laugh call me crippled and said I walked like a duck or penguin. They would cruelly imitate and laugh. I thought they looked so ridiculous. 

As I got older my peers would tease I was a cowgirl or suggest I should get off my back with sexual overtures. I remember some idiot boys would laugh and say, "C'mon Cowgirl! Give me a ride." It was disgusting and shameful to me. I had wished they would disappear during those moments.

As I age and have grown, the name calling doesn't affect me as much. Sometimes it hurts deep inside. But for the most part I  laugh along WITH them now. I think the way it affects me depends on how it is  presented. 

For example if I am in a crowd and a kid comes yelling, laughing and pointing saying to others, "Look she walks funny" makes me uncomfortable and hurts. I want to crawl under a rock. Not because of the shamefulness but because I hate attention brought onto me in that way.

But if I am with family or friends or people I know and we start talking about it, Or even if a stranger comes quietly bringing no attention I am fine with it. Actually I embrace it and am happy to answer.

The other day I was having my day with BabyGirl and her friend was there. It was the first time I met him.  I can't remember exactly how he started as we were walking down steep stairs. I was concentrating on not tripping. He said something like "What happened, you walk like a PIMP ..or a gangsta?

It caught me by surprise because BabyGirl usually tell her friends before so there would be no awkwardness. I asked, "BabyGirl, you didn't tell him." She said no and proceeded to tell him that I had Cerebral Palsy. He responded, "Oh I am sorry." 

I just started laughing and said that was a first! I had been described many things but never a pimp or gangsta.

He apologized and I could tell he was sincere and met no harm. I wasn't offended or hurt. It just struck me funny.  

I giggled throughout the day when I thought about it.

It is amazing how different people can describe one thing so differently.

Have you been called a name that was funny? What kind of names were you called that hurt your feelings and why?

Update on Post Regarding: Embarrassment because of CP in FAMILY AND FRIENDS

After a previous post I continued to read the thread on the Cerebral Palsy group.  It disturbed me to see how many others with CP were seen by family members.

I was feeling hurt for these parents. I felt like the embarrassment was directly pointed towards me. On the other hand, I continued to think how God blessed me with such a loving and compassionate daughter.

I needed to call her. There was a deep longing to talk to her. When I heard her voice I started crying. I don't know why.  I really can't explain it.

As I was blubbering I thanked her. All she heard was me crying. She couldn't understand me. It is hard to understand me when I am crying and upset.  Concerned, she kept asking, "Mom, what's wrong?"  I heard some panic in her voice. She thought something happened.

After I calmed down, and took some deep breaths. ( That's our instruction to each other when we are upset) I thanked her for being such a good daughter and explained to her why I was upset. She said it is okay and she loved and appreciated me the way I am.

I needed confirmation though and asked her to be completely honest and tell me if she was ever embarrassed by my CP. She said absolutely not. She didn't think much about it except for when it was hard for me to do something but never embarrassed.

She also reminded me that when she was in 4-H she did a presentation on Cerebral Palsy so maybe others would understand. She doesn't remember the day she stood up for me. But I certainly do because it was that moment that I knew she would be okay with a Mom having CP.

Anyway, regardless how that thread upset me, in the end it made my daughter and I bond even closer. If that is even possible.

Every day I thank God for my daughter. But I have added a thanks for not just the daughter he gave me but for the loving, compassionate person she is.

Embarrassment because of Cerebral Palsy In Family and Friends?

From time to time I go onto a CP Community Board on Face book. It is for all who have CP to congregate and ask questions and/or share their stories.

As I was scanning through I came upon this question. 'Ever see your child "embarrassed" because of you? '

Surprisingly to me, many had stories about their children being embarrassed.  Some kids requested they not walk with them etc.

It sparked a reminder of one of my online friends/fellow blogger had a set of parents who were not accepting as she grew up.  When I heard her story, it also boggled my mind. It still does when I think about it. She is a strong person getting through it all but I can't even guess how she felt.

One girl shared that she was asked to  walk in her friend's wedding. However, when the parents met her they said she would ruin the wedding. 

SERIOUSLY?!

The girl told her friend it was okay to find someone to replace her. She wanted her friend's day to be special and go smoothly. She knew her friend wasn't embarrassed.  

I admit she took it better than I would have. I probably would have done the same thing for my friend. But on the other hand I think I would have been hurt because she did not stand up for me. 

Reading other people's experiences make me realize how blessed I am. I have a family who have never been embarrassed by me.  They accepted me for who I was. 

I can say without a doubt that my sister was not embarrassed by me. Yea, like every sibling rivalry she probably wished I would go away as I was a pesky little sister. It was my job to make her annoyed, I admit I did it well sometimes!

None of my friends were embarrassed by me. But then again, I would not have friends who didn't accept me the way I am and were embarrassed of me. I was in two of my friend's weddings. I couldn't believe they asked me. I had voiced my fears of falling down the aisle with the long dress to one. Her response was it could happen to anyone and if I did, she would just come pick me up. It meant a lot to me that my friends accepted me and loved me enough to ask me to wobble in their wedding. (It was supposed to make you smile!)

My worst fear was for my child to get teased or embarrassed by me. But early on she showed she was not. She defended me when one of her classmates teased me and let him know it was in his best interest to keep his thoughts to himself. And in the fourth grade, she had a 4-H project. She did a presentation on Cerebral Palsy. 

It's unimaginable to me that people who are important in your life would be embarrassed by your CP. I just can't wrap my head around it.

I am sure I will be thinking about this for a bit, trying to figure it out. 

My jumbled thoughts are:  

It is not like you can do anything about it if you have CP. None of us with it asked for it. Probably all of us would agree that if we had a choice we wouldn't have it. But we're stuck with it and we just have to make the best of it. 

I understand children can be selfish and inconsiderate at times but to treat their parents who gave life to them like that, is incomprehensible.  

I understand some teens go through a phase of independence and embarrassment of their 'normal' parents. And maybe that is also true for children of disabled parents. 

As mentioned by others in the CP community  my worst fear came true for them. Their kid were bullied because he had CP so the kid requests they stay clear of him when they are at the school.  Or their sibling has CP and they are being teased because of it.  

Maybe it is not totally embarrassment but fear, of them not being accepted by others because of their parent or sibling with CP. 

It is such a cruel world. 

I don't know. I guess it never happened to me and I can't understand it. In my life, family was important. We were to love, respect and accept each other, period. 

What do you think? How do you think you would feel if you had any kind of disability and your child was embarrassed? 

Disappointment In Priest's Response

As posted previously I encountered a tactless Priest a few weekends ago. It upsets me and I have thought about it ever since. It bugged me so much I knew I couldn't let it go. After talking to others and praying I came up with a plan. 

I did not want to resolve this with animosity or put him in an awkward position. But I did want him to know what he had done.

After mass this past weekend, Hubby and I lingered until there were a handful people left that were off to the side talking among themselves.  I made my move.

I walked up to the Priest smiling and as we shook hands I put my other hand over his and looked into his eyes.

"Hello Father, the other day you asked me why I walked the way I did,..." I began. 

He ended the eye contact immediately interrupting and retorted "Yes, I wanted to know if you were hurt." 

At that moment, I knew it was not going to turn out the way I had hoped. His body language and averting eyes showed me he wanted to me go away. 

Determined and attempting eye contact (but failing as he looked everywhere but at me) l  softly said "Well I want you to know that I have Cerebral Palsy. You can Google it if you are interested.  I was hurt and embarrassed when you loudly asked me in front of most of the congregation. I am telling you this because I do not want anyone else to feel like I did. "

He chuckled (Yes he chucked although awkwardly) and said, "That was not the way I meant." 

Someone walked pass and he turned to them leaving me standing there and started talking to them. I was dismissed I guess. I just stared at him for a few seconds and walked away.

I was so very disappointed. I felt like I had failed.

But I didn't fail. I had a mission to inform him how it affected me.  The results weren't what I expected but I was able to do what I had set out to do.

I had faith and hope that he would see his error and attempt to make it okay. But he did not even apologize.  Probably in his mind, he did nothing wrong.

Maybe as he did me, I caught him off guard. Maybe he was so shocked he couldn't think 

I pray that he at least gives it one more thought before he acts like that with another person. 

I also will not let it affect whether I go to church or not. I will  enter the church every weekend with my head up high.  I am not going to mass because of his. I am going spend time with God!

Through my life I have had realizations as most of us do.  One of them is sometimes as much as you try, some people don't always get it or they do not want to get it. Regardless, it is nothing on me as long as I did my best. 

I have a blogger friend, Lyndz who also has CP.  She recounted my story adding her own personal experience with her parents who are Pastors. Please check out her blog. She even asked followers to stop at my blog and give "me some love." She made me smile. But her story always pull at my heart strings. I think of what I went through with this Priest, and it is nothing compared to what she had to go through with her own parents. She described me as a "fellow soldier in the cerebral palsy trenches". What an analogy! I love it. I wholeheartedly think likewise about her.  Thank you so very much Lyndzy

Warriors with CP such as ourselves need to band together for support and not feel so alone. 

She also posted a video. I admit I am not into music nowadays  I only listen to it when I am in the car and that is usually a classic rock. But this video pretty much hits home.

Thanks to everyone who has commented and emailed me with your love, support and advice. It is appreciated greatly.  

Cerebral Palsy: Extremely Unsteady Today!

I don't know what it is with me today but I am so off-balance, a lot more than normal.  My gait is much wider as well.

I get up from a chair and oops..butt hits the seat I just got up from. So I have to do it again. Luckily, or may be not,  this apartment is small and cramped so if I weeble there is something I can grab to prevent from badooming! . But the adverse of it is I can fall,  miss and hit the floor and piece of furniture on my way down and conk myself out!

We went to the home center where we are buying our home from. (Another post later date). As we walked my hubby had his hand on my shoulders to try to stabilize me and for in case I go tumbling he had a better chance to catch me. I thanked him because I sincerely appreciated the gesture as I was doubting myself and I seldom doubt myself in this matter.

I was walking a little faster t than usually because walking my usual pace had me teetering and I felt like I was going to fall over. That is not a good feeling.

I can be standing and people will  pass by me closely or just touch me with a finger and I can land on the floor or weeble wobble. Thankfully, I weeble wobble more than hitting the floor!

Today I was standing up talking to someone and in seconds I felt myself shifting and I lost my footing. I wasn't even moving. I was holding on Hubby for dear life LOL.

I have had this happen but not quite extreme. It happens when I am tired or walking in a crowd that is stopping and going or so nervous but never this bad. Also, when I was out of the situation or rested I was fine.

I've been thinking about would be causing this. I am not tired, I wasn't walking in a crowd and I was not nervous. I am not on any new medications so who knows. It has gotten better as the day progressed but LORDEEE!

Ya'll have a good week because I will be away, (Burglars out there, I have a house sitter so don't you dare try). Although I am bringing my computer to check on emails I will not be on  much.

Most importantly, thank you for stopping by and reading and if you comment. It is much appreciated (even if you don't comment.)

If you should have problems commenting as I've been informed by someone,  email me at my yahoo addie: Bellelady1981@yahoo.com. Not sure if I can help but am searching for a resolution.

Searching For A Person Who Has Impacted My Life

I know have so many other things to catch up with on here but here's something that's been on my mind.

When I was a little girl, I had several surgeries on my legs because of my CP. I remember my mom and dad driving me in their un-airconditioned and hot leather seat Buick 134 miles to New Orleans Touro Hospital. Those were some hot and sweaty trips!

The hospital had a ward of children having surgeries or recovering. I would drop their kids off and was never seen again until they picked up their child. I remember Mom acting surrogate to them.

Anyway, I also remember the Candy Stripers. There were young girls who came to visit the children, like Pink Ladies do. Do they even have Candy Stripers anymore?

Anyway, one girl I got attached to. She was a lifesaver for mom because she would come visit me and spend time with me. Mom would walk to the store across from the hospital and buy me treats and our puzzle books. Faith Rochon, the candy stripper and I played cards a lot. I remembered looking forward to her visit.

After my surgeries for several years she and I wrote to each other. The last time I wrote to her the mail came back to me. I've been trying to get in touch with her by finding her but all I remember is her maiden name. I think she got married.

I guess it is one of my missions is to try to find her. I have no clue on how to do that because I've lost all of her mail. I have pictures of her but it sure would be nice if she happened to look up her name and find this blog. I want her to know what kind of impact she had on me and my family. I want her to see how I've grown and would love to see her again. I want to see what happened in her life.

I found a person with her name on Facebook and have sent her a message. But I don't think that is her.

I have no clue how to find her. She could have moved out of state. So just say a prayer that God will lead me to her.

Thanks for stopping by and if you wish, say hi and direct me to your blog!

Update

I hope everyone is having a wonderful Labor Day!

I was on a path of writing regularly than SLAM! I started a few but threw them in draft. My thoughts are all scattered. Let me just tell you recent events.

I got my disability check BUT not last month's. So I am in the system once again. I am still contemplating if I want to get a lawyer to see what I can do or just chalk it up to the government and leave it alone. I don't give up easily but what the lawyer would charge would probably take what my check is worth plus more. 

Last week My BabyGirl and I had a sleepover. We had our weekly outing. Since  MyLove was out of town and she seemed to be alone I asked her if she wanted to come spend the night. So she packed up and we came here. We watched two movies, talked and I put her to bed around 10:30. It was hard to do but I told her to take the phone off. We woke up and I brought her to college.

After her morning classes, I picked her up and brought her to the apartment so she can get her bike and ride back to college for her evening class. I enjoyed my time thoroughly and didn't want to let her go.

A while back I was searching YouTube for a country singer my daughter had mentioned. However, the suggestions on the side grabbed my attention. If any of you have not seen Annoying Orange you gotta see this. OOps I tried putting it below but it kept going where it is now.

There are various videos featuring Annoying Orange. The laugh is wicked. It is cool the way the creators have the mouth move to the script. I cringe every time the knife comes even though I know it is going to happen. I now have to have my "Orange" fix every day.

I also have joined a couple of groups on Facebook. One only accepts people with cerebral palsy. It is astonishing to see so many people with the same difficulties and although our lives are different, we have some similarities. It is nice to be able to know somone ACTUALLY knows how certain situations make you feel.

I also joined a "Remember When you Lived On" ...:.and it states the little island I grew up on.  It is remarkable how many people lived there before we did and after. We remind each other the little things we had forgotten. We remember the people that have touched our lives. We remember our adventures we had: Going to the sandpit, swimming in the bayou, stopping for the alligators to cross and much much more. Everyone remembered chasing the train man and he throwing candy to all of us. We remember our field trips, the little school we went to etc.

Most of all we realize  how special that island was to grow up on. We never thought we would be reminisicing living there. It was a true beautiful place to live.

 I used to wish there was a place like it to raise my daughter. But there will never be a place like it.

CP Group

Yesterday, somehow I happened on a group on Facebook. It was probably my spastic hand doing its own thing at the moment.  (HAHA)

This group is specifically for people with CP.  Members share their life story. They ask questions. Some are just hanging out.

It is amazing to read other's stories. It is cool to be able to say, "OH I so can relate!" or "Yep, that happened to me". We all have our differences but it is nice to join a group that actually understands or has been through what you have been through.. It shows WE ARE NOT ALONE.

There are young people with CP struggling to be accepted for who they are, not by what they have. They have concerns what they can or can't do. There are older people who have been through the same the young ones are going through that can support them and encourage them.

It is amazing how soceity has accepted the 'disabled"; compared to when I was growing up.

It is amazing to learn how the braces and therapy changed and improved.

I have had some ask me how it was when I was in high school, how my CP affected me going to nursing school, how it affected me being a parent and many more. It is great to be able to share your experiences with someone and able to encourage them, "You can do this."

Thank you Leigh Lockrey for putting up such an awesome page!

Someone asked me privately how did my child feel growing up with a mom with a disability. My daughter and I have discussed it candidly. It was my worse fear that she would be ridiculed because of me. She stood up for me. She doesn't remember the one time that made me realize she could hold her own. .

Anyway I asked her to write a paper stating her real feelings about being raised with a mom with a disability to share with others. Stay tuned for her letter next post.

After two weeks and 5 phone calls, I have received my records from the Crippled Children's Clinic. Eighteen years of my life were compacted into 130 pages of progress notes, surgical reports, x-ray reports, payments and correspondence.  Most were progress notes,  telephone calls and correspondence from social worker to insurance back to clinic. What a circus that was!

The first thing that I realized was I almost weigh the same I did when I was 13. Only a few pounds more. I also had a State Case Number. I guess I should have known that the help was through the state since it was a 'free' clinic.But what can I say I've had a brain fart all my life. "SIGH"

Looking through my records I am  able to get a better timeline of my surgeries and what happened between. I am learning the names of the apparatuses.

I have discovered unknown terms used to describe the surgeries, braces, casts etc  You can bet I am looking them up to understand more!

The descriptions of my my family as individuals and as a family were mostly positive, except for the pyschologist which I was expecting.

I learned that how the costs of medical care has skyrocketed since the disco era.  My dad's income at the time was wide opening. I wish I had the rent and bills they had! I would be living like a queen.

I was reminded of the names of people who came and went through my medical care. It makes me wonder what happened to some of them. Some names I have no memory of them. I can't picture a face to the name and. It frustrates me.

My parents told me stories throughout the years but I think I have a better understanding of what they had to go through to fight for what I needed. My appreciation of their courage and the parents are trifold than before.

There were also pictures they had taken to mark my progress. I was half naked. I remember at one point, my mom telling doc that I was becoming a young lady and the nakedness was going to have to be less. So I wore my panties and balloon undies as they had to see my legs. What I will treasure the most is the pic of my awesome doctor I had. My memory distorted his face but now when I think of him, I can have a clear picture.

I've read all of the 130 pages at least 40 times since I have received them. And each time it brings back a new memory.

I have a plan to take the information, dissect it on some kind of chart like a writer makes an outline.

I know some people have no interest or wouldn't be as excited as I was but I guess I wasn't a nurse for nothing. I always had questions and were interested in medical information. It's kinda like a child in a toy store for me with my records.