My Own Experience

I was thinking this weekend of some of the times in my life, especially before I could communicate, and what people misunderstood about me.  I thought it might help if I wrote about it from my memories.

Me at 1 week old


For the first ten years of my life I had no way to share what I was feeling, thinking or needing.  It is hard for me to remember how painful it was to be misunderstood, but I feel good today so I feel ready to share some of my memories of that time in my life.  I know there are many girls with Rett Syndrome who are experiencing some of the things I did, so I hope if I can share my story that it might help someone.

I wasn’t able to tell anyone that I was hurting or that my tears were grief, or terrifying fear.  I haven’t had much hurt that I can’t share in the last 15 years, but before the keyboard I couldn’t say anything to respond to people’s comments about my intellect, my body, my vision, my ability to understand their words or that I could read. So I understand many of the girls’ pain and tears.  I remember the doctor telling my mom that babies don’t get headaches, while I was having terrible headaches.  I remember them telling my mom that I was having absence seizures when I was just staring into space because I couldn’t stand someone being so close to me.

9 months old. I cried a lot. Leah was very patient with me.

I doubt that most people think about what it’s like to need to urinate and you can’t tell someone you need to go to the bathroom.  I am not able to hold it long enough to get to the toilet, because I cannot walk there myself, so I wear diapers. It’s really embarrassing to urinate in a room full of people even when they can’t tell I am going.  I have to try and calm myself enough so I can do it in front of them.  Sometimes I stare off into space so I can create some privacy for myself.  That’s not a seizure.

If people assumed I was not intelligent, they said some really awful things right in front of me.  Many of my memories of going to doctors and therapy visits are painful to remember.  Sometimes they would talk about me in front of me, saying whatever they wanted to say to my parents and then turn to me and talk baby talk and speak LOUD. If someone thinks you are profoundly mentally impaired they don’t worry about what they say in front of you.  They don’t worry if your feelings are hurt.  They don’t worry that they might be completely wrong.

I was so uncomfortable in this seat that was created for me but I couldn't tell anyone. I cried in it.


It makes me feel so amazed today how much different I feel just knowing that more people believe in me and that I don’t need to try and prove everyday, in a body that refuses to function right, that I am in here and that I feel everything very strongly.  That I see them and my intellect is as good as theirs.  I can remember feeling terrified that the best day I could have is if I wasn’t in pain, for the rest of my life.  It was terrifying.  It was a life that wasn’t worth living.

I cried so much as a young girl for many reasons.  One of them was because of terrible  headaches. They are some of my earliest memories before I was one year old.  It hurt so bad because my doctor was telling my Mom that I couldn’t have headaches because I was a baby.  She didn’t know how to help me.  I would hold my hands up by my head and scream.  She started taking me to a chiropractor before I was one year old to see if they could help.  One of the things the medical doctors said was my head was small, but because we didn’t know about Rett yet, we didn’t know that was part of it. The Chiro worked on my head a lot and it helped relieve my pain.  They were very helpful to me.

Another reason I cried was fear.  I was so afraid.  I knew that something wasn’t right in my body because I tried so hard to pick things up, and feed myself or say words, and I couldn’t.  It got worse when I was old enough to see other kids younger than me who could do those things. I felt terrified inside because I couldn’t find a way out.

When I was 1 1/2 years old other kids could do what I wasn't able to.


The other one I can talk about is grief. That didn’t come real early for me but by the time I was three years old, I was pretty eager to do things that others were doing around me. But, I couldn’t.  I was so sad.  The only way to relieve my sad feelings was to cry.  Since I couldn’t talk about them and teachers and therapists thought I was so impaired they didn’t offer me hope, I saw a life of grief before me.  It is hard to handle those feelings at such a young age.  My Mom and family believed in me but didn’t know what I was capable of.  The messages they were given by the professionals were not hopeful.  My Mom faced much grief and pain herself.  She loved me so much and tried so hard to give me a loving home with a happy life.  It helped me so much to know that she believed.  I feel so much better now that I know there is so much more to life than what we see and experience here. But before I knew about spiritual things I didn’t care if I lived.

My mom rocked me everyday


It has been hard to remember these things today, so I am stopping now.  I hope your girls and others who are non-verbal are helped by my story today.

Love, Karly


2 Responses so far »

  1. 1

    Danielle Ferrin said,

    Oh, Karly. Your writing and memories are so bittersweet to me. The sweetness is to get to see pictures of you and your mom and Leah when you were younger and get a glimpse in that part of your life I didn’t know. I think it is so precious to see pictures of people and where they’ve come from! The awfully bitter part is the way I can only partially imagine how many days you struggled through such awful things, and had to deal with them all inside yourself. It is so wise and growing to look back, but for you, the strength that takes makes the message all the more powerful. I KNOW there will be lives touched by this writing – hopefully many people who will realize what you always say – to assume the best and most capable of anyone. I am so warmed to think of the grace that carries you and helps you move forward and forgive and try again in love. Thanks, dear friend!

  2. 2

    Sandy said,

    I cannot begin to imagine the struggle and grief you endured. I am so grateful you are willing to share that part of your life in order to give others insight and hope. You are truly one of my heros!

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