Having Cerebral Palsy can come with many challenges and obstacles. It can also come with rewards and the ability to help others. It can also change and teach you valuable lessons. It makes you appreciate the little things in life.
But, for me personally, it comes with challenges and day to day struggles- it’s not perfect or easy/
Let me tell you what it means to me.
Let me start by telling you in case you don’t already know, the form of CP I have is called Mild Spastic Disglagia (SD) for short. The term “Di” means two-so two parts of your body of your body are affected. In my case, I’m affected in both my legs. I’m one of the very mild cases- and I’m lucky.
My struggles everyday come on a day to day basis. I can’t do a lot of things by myself the avenge person is able to do such as bathe, feed myself and go out on my own. To do all of this takes usually two or more people (depending on what the task is) My parents cook almost every day and feed me because I can’t feed myself a hot meal. To go out- it’s a project just to get me out of the house and dressed. Getting dressed is tough for me as well; I can undress but can’t redress. It also must be done in steps: Washing, brush teeth and put clothes on. It might not seem like a lot to you, but to me it’s brutal.
My parents are my caretakers almost all the time. But they need a break because they can’t do it all. So, during the week, I have an aide that comes 5 days a week to help with bathing, giving me a snack (if I want it) and she also helps with chores around the house such as laundry. She is a great worker- she’s been with us for about 7 years. It’s very hard to find a good aide these days especially in the morning time- I won’t even go into my track record with the morning aides because it’s horrible. I get my aides services through a Visiting Nurse Agency-I’ve been with them since age 3 They are part of the benefits I get. If I lose those benefits, I’ll lose the aide I have. it will probably be hard to get those benefits back (2 years depending on where I am on the waiting list.)
The aide helps with bathing every day of the week. So, the times when she’s sick or calls out for a well-deserved day off- she hardly ever calls out, either my mom puts me in the shower or we skip it all together because we’re all tired and have no energy to do it. I don’t get upset about it because I’m always as tired as my parents are and have no energy to do anything almost all the time.
Because of my CP, I use up two or more times the energy then the avenge able-bodied person would every day. The only possible way for me to conserve my energy if my legs get tired is to sit down and rest. But, I’m a very stubborn girl and don’t like to sit down even though I know I’m supposed to. When I walk and the person next to me sees me getting short of breath, they always ask me, “do you need to sit down?” and my answer almost all the time is, “no I’m good.” Even though sometimes I’m so tired and sweaty from exerting myself I know I need to sit down, but I don’t want to-I to make myself keep walking until my legs feel like jelly.
When you have my type of CP you also will need to incorporate Physical Therapy and OT into your daily life. If you don’t keep up with PT, your legs will eventually get tight and you will lose your mobility. OT can help with your hand-eye coronation- I can manage without that to be honest. For me and to my doctors’ PT is more important to help maintain my mobility- if my legs get tight I won’t be able to move them- it that happens I will need to have surgery to loosen my legs up: it’s the only option sadly.
When we go on trips, we always say were goanna “pack light” for me but that never happens. We bring everything. We always must make sure the hotel room we stay in is handicapped especially the shower in the bathroom for showing-if it’s not a walk in with handlebars mounted, then I can’t shower.
For me, having CP means even though your working to be as independent possible, you know deep down in your heart that no matter what age you are, no matter how independent you become, you will always need help with things. When you hang out with friends especially new ones, you need to prepare them ahead of time and let them know your gonna need help with bathroom related things and cutting up your food. You do this because you feel that some people won’t have the patience to help you and you feel like your going to be a burden to them. Even though your new friends reassure you 100 plus times that you’re not going to be a burden to them and they will do anything you need them to, your still unsure and worried. You have your “Why me” days where your frustrated and tired- and some days you feel like you want to give up and say, “forget this.” You keep going no matter what. When you have a strong support system and lots of love around you, it’s the one thing that keeps you going and gets you through every day.
For 19 plus years, I thought, “There’s no one out there with CP like me.” Man, was I wrong. When I started connecting with others with CP it made me realize I am not alone. There are a lot of others with CP who are fighting with me. It gave me a new perspective. I thought I was alone. But I know now that I will never be alone. No matter what! I am so grateful and blessed to have been able to connect and get to know these people. Without them and their consent support and love, I don’t know where I’d be right now. I’d probably still be in hiding and ashamed of having CP.
Thank you to those people that I’ve connected with that have CP. Thank you for making me feel loved and supported this past year and a half. Thank you for making me realize I’m not alone. Without your love and consent support each day, I don’t know where I’d be right now. You are all amazing people and you inspire me every day with the things you do. I love each and every one of you and I’m so grateful for you!
“With each step and breath, I take, I now know I’m not and will never be alone. I will never have to think I am that lonely girl with Cerebral Palsy ever again.”