My Story

This is not something i planned on doing one day at 3 in the morning.  The mind wanders, and after a long time of searching i found something... remotely close to what i was looking for.

Somebody else with the same disease.  I can't say its a burden, but i can't call it a gift.

Everyone in my family calls me the "miracle child".  Wasn't supposed to live my first night, if i did live, massive brain damage, probably would be a vegetable, never supposed to walk, blah blah, all the same stuff that they seem to tell everyone who has SA.  However, here i am,  spilling my perfectly healthy brain onto this laptop, to a random forum i found.

I love the idea of this website... i found growing up the biggest thing about SA is there is pretty much nobody who has it that lives around you... and honestly, that can make someone a little lonely.  I am happy to see I'm not the only person who is "lucky" to have gotten this far!

Growing up was never too hard.  I guess the hardest part about everything is the confusion.  Nobody seemed to know what was going on, nobody knew what was wrong.  The other part of this disease, as I'm sure many people are aware, is the bladder problem... so embarrassing.
I have never spoken really to anybody but my mother about it, my entire life.  As growing up, nobody knew exactly the problem, my family believed it to be more of a mental issue than a physical one (she finally admitted to me she believes i have a problem when i was 16-17) but pretty much until then, i spent a lot of time grounded, for being "dirty". 

Now don't get me wrong, i have this problem under control.  a steady bathroom break of a billion times a day and a pad for when i need to go far distances does the charm.  This is a formula i made on my own, so as not to be dirty.  Nobody wants to deal with that!!

Anyway, i grew up with a lot of really good friends, never got into any real trouble.

Than i turned 15....

Marijuana became my best friend.  don't get me wrong, i had my group of close nit friends, we would bike around town for hours and hours, doing all sorts of stuff, mostly getting high, making raps.  When i was in grade 12 i dropped out of school.  i personally find they way they teach in public schools (at least in Ontario) isn't the best teaching, i could find better on the internet.  I was actually home schooled in grade 8, that was okay, i felt i learned a lot more important things for my education.  I dabbled in drugs and alcohol for a few years, as most teenagers would, i had my sleepless nights and i had my female interests.   But when i turned 18 i found a girl, i'm still with her two years later, and she's amazing!  i may dabble in the marijuana once in a while, sometimes when in severe pain, sometimes when i'm with some friends.  I have joined a college, learning CGI (films and video games, such as Ubisoft or Pixar)  Something i can do sitting down, something i can do that i enjoy.  It got me away from a bad situation in life, it got me back on track into making myself a responsible, practical, and useful human being.

Anyway, so far that's a lowdown of my experiences growing up.. I have a great girlfriend of two years, two cute cats. an amazing apartment in Toronto.  Getting a job from help from the government, going to college.  I'm excited to see where life will take me.

I'm currently setting up an appointment for my first ever orthotic shoes.  $2000 shoes!  i hope they help. Over the years my right foot has gotten flatter (my heals have never touched the ground before, my feet were in a stuck position) (actually i think this may be important, i do not have ankels, and i lack a tailbone.  I don't know how many other people with SA have that... my thighs are huge, i just started growing muscle on my calves, i believe from biking so much) than my left one, making my back slightly more painful for, well everything.

I should end this here with this

Never let someone tell you, you can't do something.  That's probably a quote from something, but it's still very true.  You can do anything.  A disability doesn't need to bring someone down, and you shouldn't let it.  Try everything and anything to be a better person.

Anyway i think this is the first story so far, it's certainly not the best, but it's now 3:30 in the morning and i should go to sleep.
If you've read all this, thanks.  i've never told my story before, i would love to talk more detail about whatever i guess.  As well as i would love to hear someone else's stories... still havent met anyone with this disease, and i would love to see how other people cope!

Thanks for reading... and uh... have a good one :D
Cotton21 Cotton21
5 Responses Aug 28, 2011

Hey, I'm Hannah, I'm 20 and 4'8 in height.<br />
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I don't have a tailbone either! Coccigeal sacral agenesis. I am only just finding out about my disabilities now as iv never had them explained and iv never found anyone with the same problems. Until now.My right leg didn't grow right from the knee down, no calve muscle, bones missing, little sensation. They wanted to cut it off when I was born! Haha.<br />
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My spine was resting on my hip until a spinal fusion in 2011, they couldn't make it straight but its better. I broke the rods 10 months later, 2years down the line the doctors finally listened to me, as they said the pain and the creaking I hear is all in my head, they did an xray, found out I broke the rods 3times. I'm in agony but the op should be soon, need to get rid of a urine infection first urg. I'm so happy to hear from real people who deal with this, all iv read are doctors reports, statistics and story's of people who have it who are always happy. But I'm not.<br />
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I struggled with drink and drugs in my younger years too. Better now though. I have severe depression and all the good stuff that SA brings. I feel so alone. Been a 'lucky' one is pretty hard and people with back pain think they understand, but when your spines free floating, bones missing and some spinal bones only half grew. Being twisted and in pain. I'm glad iv found people with it now. It helps.<br />
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My right leg is in a leg support all day, I have no ankle, can't move a thing, had surgery on it at 18months old to release the tendons as it was curled up, they messed it up so I can't wiggle my toes, as I could before and they confessed to messing up. Iv had two operations on my left knee to stunt the growth to make my legs the same height, instead it took inches off my height and there's still a little difference. I use to walk with my right leg turned in but the support stopped that.<br />
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I don't have a problem much with bladder accept sometimes having "accidents", sometimes I can't feel that I need to pee and it use to take me hours to pee, like 2 1/2 hours. But its better now. As I didn't know about my disability I never understood why I peed myself, as a kid I wet the bed every night til I was 14, I would pee myself as coning home from school I'd be bursting and never make it up the stairs. Or why the docs were so concerned and monitored my bladder. Why didn't they tell me all this stuff >.<<br />
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So yush. Its been amazing reading these comments and your story, don't feel so alone now.

Hi, Just read your story. Thankyou so much for sharing. I have huge thigh muscles too. I think it is a compensatory thing with me. I have no voluntary ankle movement and my calves are virtually non existent. I think my parents were also told I wouldn't walk. I've had lots of surgeries on my legs when I was young and used a walking frame until my legs built up strength. The surgeries often had a long recovery process that was painful. I am so glad I pushed myself to walk. I love the freedom it gives me to be mobile. Now I just wear shoes with orthotics and I get the heels of the shoes built up on an angle so that my body weight falls on the whole surface area of the base of my foot. This has greatly reduced pain in my foot and legs. I can do heaps more exercise. I have issues with bladder and bowels as well. I was so embarassed to tell people ( especially my first boyfriend ) but you sometimes find that other people handle it better than you expect and aren't that phased.

Wow, it sounds like u have been through quite a bit. I, too have a major bladder problem. I am incontinent of both the bowel and bladder. It was caught early by my mother but had major surgery when I was at the age of around 24. Unfortunately, it was unsuccessful and I am trying seriously contemplating another major surgery. It's scary but could have a major impast on bettering the rest of my life. I wish you luck and keep fighting!

Hi. I'm a 21 year old female. I have SA and the only other people that I've met who have it, are those that I met at "camp" where I was taught how to cath. This camp was held at Shriners hospital. The counselors taught the students how to cath, to swim, and to do arts and crafts. They never made us feel like we were different from anyone else; that our disease didn't impede us from being just like everyone else, and that we could accomplish our dreams. Despite the encouragement, i still felt different I was the only kid who could walk at the camp. I grew up so ashamed of being different. I didn't want to be at the camp because it reminded me that I really wasn't the same as everyone with whom I went to school. I was ashamed of going to the camp and I was ashamed of being ashamed. I would make excuses not to go to doctor's appointments. I didn't want to accept that I had a disability. A lot of kids told me I walked like a penguin. I have really small feet, which people love to comment on. Over the years, I have learned to accept myself for who I am. I truly am a miracle child. The doctors said I would be a vegetable all my life. I learned to walk at 2 years old. My feet do hurt me a lot. I have more trouble with my hip though. I had surgery on it when I was a little more than a year old. If I do too much, i will have a full pain. It's not all the time though. My feet hurt if I stand up for a long time. I'm a little overweight, so I'm sure that contributes to it as well. I think my biggest problem now is not believing in myself. I was told for so long I couldn't do so many things, that I still tell myself that. I didn't go on a lot of fun school trips because I was afraid I couldn't do the same activities as the other kids. I freak out if my friends want to take a trip somewhere where there will be a lot of walking, because I'm afraid I will get too tired. I also freak out when there is mention of the beach. I am not ashamed of my feet because they are mine and they get me around, but I don't like all the questions, stares, and pity that I get when people see them. I have spent so much time denying who I am. In glad to open up on here. I know this was all jumbled up, but I want to write my story for real one of these days. We are amazing people, despite our disability. We can accomplish so much.

You sound like an amazingly strong person. I, too, have SA but have issues mainly with incontinence of both the bladder and the bowel. I too use a cathetar. I have always had to wear diapers and always tried to hide it growing up as well as a I could. I had a major surgery done years ago and unfortunately it failed. I am trying to get the courage to go through another surgery once again and better my life. You definitely are an inspiration. keep up the good work.

I am a 20yr old female, born with sacral agenesis and like you have never meet anyone else with the condition. Its funny how i can relate so much to your experiences. I dont really like to talk about it much but am very proud of who i am, and fortunately i am lucky to live a very priveledged life both with family and friends. I can walk :) thats a plus ! and I am so used to hiding my limp most people dont even know there is anything wrong with me. When people do ask though i love telling them as its who I am and to be honest I love being different. My feet do give me a lot of problems haha I call them my princess feet because the like staying in comfy shoes and being pampered hehe, but they do get extreamly sore and if I overdo my walking the bones fell like they are moving :s. nyway good luck and I hope you all the very best for the future.