I've wanted to talk about it on the board since it happened but I wanted to talk to my best friend of 18 years (who also has cp) first and it's taken me so long because it's been too hot to post (my IMAC does not like living without central air!) and because I am angry with my friend's response which was hard to hear because for the first time in 18 years she didn't understand me, and (probably without knowing) hurt me with her response.

Firstly, I guess I should point out, my family tries to be very active. Bike riding and walking are what we do because it is what I can do. Growing up my parents tried to accommodate me and going walking with them or bike riding was never unpleasant (except the time my brakes gave when I was coming down a very crowed hill on a bike path and I freaked and lost control, LOL!) It wasn't like we went on short little walks around the neighborhood either, they were big walks across town, or miles of paved walking trails that took all day! I really do enjoy walking like this as long as I'm not holding up the group.

Well... I've been spending a lot of time with my aunts, cousins (all adults, who have their own children) and my sister (who also has her own children.) And we love going to the zoo. We regularly make a day out of it and generally have a have a half dozen adults and a dozen or two of children.

This last trip to the zoo I was not feeling up too, but I love going to the zoo and spending time with my family. Another reason I did not want to skip out was because family from out of town would be with us and it was more or less a birthday celebration as well. Anyway...

The night before our trip, I half joked about wanting to rent a power scooter for the day but my sister (who more or less knew I wasn't entirely joking) talked me out of it because she didn't want to have to deal with the kids whining about wanting to ride with me, or why was I using it (none of the younger kids really completely understand I can't do everything any other adult can do.) So, I just went without. At least I felt better when I found out there was a mother in our group (a friend of my out-of-town cousin,) who'd recently given birth and was going to "take it easy." I knew I could hang back with her and wouldn't be the sole cause of the group being slow.

Half way through, my cousin (who was the mom of the birthday boy,) the mom who'd just given birth started to slow up a lot mostly to see the animals (that my cousins' sister (from out of town) was zooming by) but because it was getting a little tiring for me. Well... the rest of the group kept ahead and sat down on benches near the lions. We never stopped and just kept trucking up to the rest of the group. When we got to them they were kind of rude and as soon as we sat down for two seconds they got up and started going again!

That just sucks! Not only is the whole walking thing easier for all of them, but they just got to SIT there for at least 10 minutes waiting on us. So now, I'm exhausted and the others have another thing up on me they've had a decent break. It continued like this for the rest of the day, the other group whined that we were slow while they kept taking breaks it was really frustrating for me. Isn't that horrible? Do you guys who walk find yourself in that position a lot?

Usually, I'm the photographer and I love taking pictures of all the kids watching the animals (since I don't have kids of my own to worry about and make sure they aren't scaling the habitat walls!) but I quickly put my camera away and couldn't even enjoy myself because I was too worried about keeping up!

In the end the trip was really hard on me. I mean really, hard and I'm not one to complain. I was crying when we got to the front and would never have made it out except I had a kid in a stroller holding me up. I told my sister quite seriously, I couldn't do that again. No way, no how.

And told her if there is a next time, I'm taking a scooter.

I felt really sad about it because I'm not ready to give that up. Walking just to walk, and enjoy my surroundings (whether I'm in a park, the woods, on the beach, a the zoo or touring a historic place) has always been something I've enjoyed. And rarely have I had the experience of people getting angry with me.

Even when I was fourteen-years-old, with several hundred middle schoolers touring DC did one freakin' person complain that I was holding up the group? NO! The most discriminatory group on the planet, was very nice to me about the whole thing. Yet my own family, is beginning to have a problem with me.

Sigh. So, after some serious thought I called my best friend and told her about my day and told her how hard it was for me to walk so long and how it seemed everyone who was more able than I got to take a break. And I told her I really was going to find away to either go through a doctor (which, I don't even have right now, let alone insurance since I don't live with my parents anymore!) and get a chair, or I was going to start renting a chair in such situations.

Her reply? I can't remember verbatim but it was basically that I've always walked (which is not true, I rode in on of those stroller things until I was like 6 or 7 and until about 11 (when I thought it was uncool to have my mom push me, ha-ha) rented a chair at malls and amusement parks) and that I'm not disabled enough to need a chair.

GRRRRRRRRRR!! What in the WORLD was that? I'm used to a certain other mutual friend saying things like that. But this was my best friend. The only person (in "real life") I've ever complained to about having cp and that has ever validated my feelings and the first person ever to tell me it was okay to ask for accommodations because I had cp. Yet here she is telling me I'm not disabled enough?

Now, she does live across the country from me and I don't get to see her a lot, and she has visited me many times in the decade since she's moved and I've come to see her exactly once in that time, but we keep a good long distance relationship. That was a huge change in attitude, that took me for surprise.

It was like a huge slap in the face. I feel so alone right now. My family while they accept I have cp and don't deny it, doesn't take about it. The only time it ever is spoken about is when an outsider brings it up.

I just don't know what to do, and I just realized today that I've got to rig up my shower at my new apartment. Something I've never had to do because when I was 10, my dad rigged me up a walk in shower with a built in bench here. Now, I have to figure out seating, grab bars and a hand shower. And my tub is TINY and my walls are all this really hard tile. I don't know even know what to get or what I'm going to be comfortable with or if my tub is big enough and if a bar can be put in my wall and if my landlord is going to be okay with someone drilling in bathroom wall. Any suggestions, ideas?

Well the immediate problem regarding the tub/shower is easy. I have been in health care all my life and currently in DME(Durable Medical Equipment) I am sure you know what that is but others may not. ANYHOW. gt yourself a transfer shower seat....sits 1/2 in and 1/2 out of the tub will not let the water leak out of the shower, and when it isnt in use you can turn it sideways in the tub and pull the curtain. Nobody will see it and it will be out of the way.
For the other NOT SO EASY issue... I think your family and friends are so used to you being energetic and self sufficient that any changes for you may be difficult for them to see. HECK FIRE I have trouble keeping up with kids at the zoo and I have no reason......Insensitive?? Yes they were. Maybe just mention to them that as we get older, things change for all of us, and you may change differently than others because of the CP.
DONT YOU FOR ONE SINGLE SECOND feel bad about using the equipment at your disposal. You are not a person that sits on the WOE is me phase...
HANG IN THERE...

Wow. I can't believe your best friend, with CP no less, reacted that way. I would've been very hurt, too.

I'm sorry your family acted that way. I absolutely hate it when something that's supposed to be enjoyable for everyone turns into a stressful situation for stupid reasons. I can relate, somewhat. I have often walked around places with certain family members who tell me they are in a rush. Most of the time, I seem to fall about two or three steps behind the person I am walking with. I've had some family members complain that they always have to turn their head back to talk to me. It's very annoying. When I go shopping with my mother, she always tells me an exasperated tone to "Come on! Walk a little faster, please." I feel like saying, "Listen, if I could walk faster, I would."

I think a lot of my family (immediate family, anyway) does not realize that in addition to having an abnormal gait, my legs get tired easily. I wish they would. Actually, I wish they would attempt to learn a lot more about CP. My mom seems to think the solution to every problem is stretching and working out. In fact, I remember that a few months before my tendon lengthening surgery in 2000, my mom suggested stretching more so that maybe I could avoid the surgery. Very irritating.

Anyway, I understand and sympathize with your frustration.

Thanks for the help with the shower issue, NitroChic ... I figured that a transfer bench would be easier then just a shower chair, but I figured it would be leaky and big. I guess not. I still don't know how comfortable I'm going to be with it, and how I'm going to maneuver on and off of it but I'm sure I'll figure something out.

Sometimes, I want to just scream at my family and explain to them that things just aren't as easy for me, and it makes me tired or gives me pain (which is my number one problem, my feet, back and joints hurt) but I'm what, like 22? They'd look at me like I was from another planet. My mom is in her late 40s and just now having the same kinds of aches and pains I have now. Besides, my family is in the "CP does not get worse camp." Heck, I have a spastic quad friend who is my age and doesn't believe CP gets worse!

Hey there, Thrill Lover!

When I go shopping with my mother, she always tells me an exasperated tone to "Come on! Walk a little faster, please." I feel like saying, "Listen, if I could walk faster, I would."

Ha! I get that (minus the please at that,) or worse... I get this from my mom, "I'm in a hurry, of course, you don't need to go in, right?" It's all in the tone, and I just hate it.

in addition to having an abnormal gait

Abnormal gait... heh... I get, "Faster!" and then in the same breath, "quit dragging your feet! Heel toe, heel toe... don't you remember?"

Then I think, Like, I'm ever going to not remember my entire childhood hearing from every PT, my Parents and others, "Heel toe" to remind me to not drag my right foot and to get my left off my toes. It's permanently etched in my mind. Not mention very, embarrassing, I guess it wasn't enough to have everyone starring at the girl who walked funny but I needed someone two yards ahead of me calling, "Heel toe, heel toe! Pick that foot up higher!" Like some drill sergeant. Oh, and if you really would like me to try to fix my gait it's going to make me EVEN slower....

Heh.... just once I want to be the one ahead of everyone and have them know what it is like to push yourself to the limit just to try and satisfy someone else!

Well it sounds to me like you run circles around them with your intelligence!! Has your family always ben unsympathetic?? Maybe pushing a bit is necessary when a child is young, but for heavens sake... you are out on your own, and independant. What more do they want?

I find this experiment interesting. I sometimes wish it was obligatory for all able-bodied people to undergo this experiment. Maybe it would change the way they think about CP and disability...

http://www.pediatric-orthopedics.com/Topics/Cerebral_Palsy/Definitions/Study_Elastics/study_elastics.html

I can relate to how people think just because you can walk and have in the past that you will always be able to do it. I have had pain for the past two years and I've had to quit walking to my classes. I didn't want to go back to camp because I knew they would have made me walk even though I had a legitimate reason not to because I had been able to do it before. Luckily my parents allowed me to stay home last summer and this summer I'm having surgery to hopefully correct the problem. Even my dad thinks that I really don't need this surgery even though we've seen two surgeons who told him the same thing, I need this surgery. Sometimes I just want to scream at people who don't get it or think that I'm faking it. Once I told my mom that she didn't understand what I was going through and she told me to never say that again because she totally understood because she was my mother. Yeah right, she cannot possibly understand since she doesn't have cp.

As for your friend, I cannot believe that she told you that you weren't disabled enough to use adaptive equipment, that's totally ridiculous. Maybe she felt as though you were a lot "better off" than she is and was jealous of you. I don't know, I really can't explain that comment or even try to justify her reasoning.

Becca

wow, wow, wow. i am sort of going through the same thing. i turned 25 last december, and around that time, started having pain in my knees and lower back, and popping in some other joints. my mom is kinda in denial(i think) and jokes about me being a hypochondriac. but i can tell i am getting worse. i am a little worried about people not believing me, b/c my family tends to sweep thigs under the rug. and yeah, i heard my fair share of heel, toe, pick up/stop dragging your feet, stop walking on your toes, and my personal fave, walk in a straight line. heehee.

but i really can't believe your friend. that makes me so sad. :( does she use a wheelchair or scooter? if so, maybe she is envious that you are not yet using such equipment on a regular basis?

That has to be frustrating. I can relate somewhat to family thinking that all you have to do to "fix" your "problems" is try harder, exercise more, concentrate when walking, etc.

You mentioned (or was it someone else? :)) that you wish your family would learn more about CP. Well, if they won't, have a conversation with them about it. Explain that spasticity means muscles contract constantly, which uses up a lot of energy (more than the average person uses when walking), which is why you need rest and breaks when walking. When the muscles contract constantly, eventually that makes them tighten up permanently. This causes contractures, which can pull bones to abnormal angles in joints...causing early wear-and-tear on the joints as well as pain. This also can make it difficult to walk fast, since our bodies do not move the way they were meant to. (My ortho once told my mom, "You try walking with your knees and waist bent all the time"...maybe suggest that your family members try to walk the way you do, and then yell at them to go faster? :D) If they won't listen (or if they're like my family, who don't believe what I say, no matter what :)), print out info from the internet about this, print out this thread, have a dr. or PT explain it to them, SOMETHING to try to get through.

If I were you, I would do this the next time they complain or your mother tells you to walk faster. Don't just let it slide. Maybe even explain how you felt at the zoo, and why, to your sister. I also think you should tell your friend that what she said hurt you and ask her to explain what she meant by her comments. I agree that she may be jealous of your ability to walk.

That was me who said I wish my family knew more about CP (although I'm sure I'm not the only one who wishes that!). I think I will start explaining more to them about CP. I guess I'm nervous to bring anything up, because my mom doesn't really get along with her mother-in-law, partly because she dominates the conversation with everything wrong in her life (including pain). But I'm not like that, so if they don't want to hear it, that's their own problem.

My dad used to comment that I should see a doctor about why I "jump so much," so I found information on the 'net about the startle reflex and CP, and pointed it out to my parents. They're the only ones in the family who knows, though. And since my siblings laugh at me for doing it, I'm not sure how to bring it up without making them feel bad, but I guess I shouldn't worry about hurting feelings.

Sorry for going slightly off-topic!

Has your family always ben unsympathetic??

Well, to be fair to my mother, I don't think she says these things as a means to hurt me. She's said them forever, and she's used to pushing me, since I was little and she's never been one who was happy that I was growing up. I think she just has a hard time realizing that, whether I'm ready or not, I'm an adult and it's time for me to be on my own. (I mean that as, I know deep down I'm ready and this is what I need but I doubt myself a tiny bit.) I'm also the baby of the family, and maybe they never thought I'd actually do this. I have to admit, I'm not the most terribly motivated person. AND, yes. Some of my cousins and aunts have always been a bit testy—but never towards me or my slowness directly.

I'm sure we're all adjusting to the reality, that I have my own place, and that I am not going to really live with my parents forever. And just maybe my mom will never stop nagging me about my gait or speed. Perhaps it's etched into her mind to and she can't help it, when she says it or is unaware how much it bugs me. Who knows? I really, didn't mean to be so harsh on my mom in my post, I just was having a bad moment and continued on from Thrill Lover's post.

Once I told my mom that she didn't understand what I was going through and she told me to never say that again because she totally understood because she was my mother.

Oh, gee! I'm sure she was thinking with her "mother's heart," when she said that. But the you don't know what it's like to have cp unless you have it. I mean, I don't even pretend to know how someone else with cp feels! We're all so different. A hemi will never really know what a quad feels and a quad will never really know what is like to be a hemi. It just is freakin' complicated!

but i really can't believe your friend. that makes me so sad. does she use a wheelchair or scooter? if so, maybe she is envious that you are not yet using such equipment on a regular basis?

You know, I never stopped to consider my friend's feelings or to try to understand why she said what she did. You're probably right. I remember when my friend got her wheelchair, well. Her first one she was going to use for school (which believe me, her parents were very strict that it was for use at school only!) when she started sixth grade, I was envious! And she knew it. Because my family kind of forced the walking thing on me at school. They just got things written into my IEP that I got extended passing time, and got to leave spare books in my classes and had my schedule switched around to move my classes closer together and my locker closer to them, too. I think it made me feel more different than a wheelchair ever would have.

Anyway, sorry for getting lost on that point. I guess I totally get her in that, she has always been the one who really used adaptive stuff to her advantage, and maybe she's always thought because I don't that meant I didn't have to. Like I said before, I don't complain that things hurt, or that something is hard for me. (Well, not very often anyway.) So how is she to know that?

I don't know! I'm terribly confused with it all! Sigh.

My dad used to comment that I should see a doctor about why I "jump so much," so I found information on the 'net about the startle reflex and CP, and pointed it out to my parents. They're the only ones in the family who knows, though. And since my siblings laugh at me for doing it, I'm not sure how to bring it up without making them feel bad, but I guess I shouldn't worry about hurting feelings.

I can relate to people laughing about the jumping thing. My parents still laugh or roll their eyes at me, and they know that it's a symptom of CP. After that I get really mad, say stuff like "DON'T laugh at me, I get enough of that from everyone else" or "I wish you had it for a day and knew what it was like"...and that stops the laughing for quite a while :)

As far as your siblings, I would tell them so that they won't laugh at you anymore. Next time it happens, just mention that it's actually a symptom of CP. You could also say that you understand their thinking it was funny, since it's unusual for someone to jump at the slightest noise, but now you'd appreciate it if they'd try to stop. That way, maybe they won't feel so bad.

I guess I totally get her in that, she has always been the one who really used adaptive stuff to her advantage, and maybe she's always thought because I don't that meant I didn't have to. Like I said before, I don't complain that things hurt, or that something is hard for me. (Well, not very often anyway.) So how is she to know that?
that is probably exactly what she thinks. so she is probably just as surprised as your family about the changes you are going through. have you talked to her about it?

have you talked to her about it?

Not lately, I'm a royal idiot and I packed my cell phone cord a week ago, and it's burried in the trailer... and my phone is dead. So, I can't call her until I get to my apt. I some of my most used things were the things I packed first. LOL

But we need to have a good long uninteruped conversation when I'm finally done hauling my crap. I can't wait.

I find this experiment interesting. I sometimes wish it was obligatory for all able-bodied people to undergo this experiment. Maybe it would change the way they think about CP and disability...

http://www.pediatric-orthopedics.com/Topics/Cerebral_Palsy/Definitions/Study_Elastics/study_elastics.html

That study is awesome. I agree, it should be mandatory for all ABs who complain about our gaits. Including DOCTORS!!

I just wanted to say thank you.....I am the mom of a 9 year old with CP....he is extremely smart (like you) and has a heart bigger than anyone I know. I realize that maybe sometimes I push him a little too hard (especially when we are out in public) but I've never heard it from his (or your) side. I think your family really loves you...it's just that we sometimes never slow down enough to enjoy the things you obviously enjoy in life. I have wished several times that I could experience the struggles my son faces each day so that I would better understand how he feels and I pray every day that God lets me be more patient with him. Hang in there....it sounds like you have a very positive attitude and that you are extremely independent. I hope my son is a lot like you when he is an adult. Thanks again for giving me a little better understanding and God bless.

This is like looking in the mirror for me!!!!!!!!! "HEEL TOE!HEEL TOE!" :jester: