I try really hard not to complain about my epilepsy, my brain injury and the complicated side effects of the five medications that I take everyday, but it is frustrating. It’s frustrating when I could depend on myself in the past and I can’t anymore. There is just so much that is different.
Last week I completely freaked out in my weight class when the instructor asked me to count how many people were there. I have trouble counting groups of anything because I can’t figure out how to group things in an order so that I will know what has been counted and what has not been counted. Short of asking everyone to stand up and then sit down after I point to them I was literally at a loss for what to do. I just tried to count the mats on the floor and then I added a few for good measure. I walked out of class wondering how I had turned into someone who is afraid to silently count people who aren’t even looking or talking to me. Bizarre.
I miss the human connection that I used to have. Sometimes it can be so hard. Conversations can be so strained and down right exhausting. My mind is slow and my speech is even slower. When I try to speak, the words don’t sound right coming out of my mouth so I repeat them. They still don’t sound right. So I slow my speech to pay attention to everything I’m saying, but they still sound wrong, so I repeat them again, and then I sound ridiculous. Then I’m embarrassed and I quit trying. Sometimes I don’t understand what people are talking about so I can’t even enter the conversation. Years ago I could have. Now I just stand silent.
It feels like forever since I’ve felt like myself. I’m not sure I know who that is anymore. When I make mistakes is it because I’m just getting a little older and trying to multi task too much or is it because of my brain injury and the side effects of the epilepsy medicine? Can I drop just one medicine that causes the worst side effects or is the risk of seizure too great? A seizure could be fatal. The risk is too great. I have to press on through the frustration.
I’m still learning. I’m still growing. I’m still trying to embrace my new me, my new world and my new normal. I’m trying really hard to like it. Some days are easier than others. Today was not an easy day.
Copyright © Gatewood Campbell, December 2011
Hello dear friend. Thanks for sharing. I think it helps to express in words how we are feeling. I too get very frustrated with the disability that I live with each day. It is very stressful having to think about each step, and constantly worrying about splattering the ground. Definitely some days are harder than others.
I admire you so much. I do not know where you find the strength that you have. Everytime I see you, you have the warmest smile and the most loving hug for me. Your love knows no bounds and you never let anything stand in the way of giving to your family or to your friends. You are a daily inspiration and I’m so thankful to have had you in my life for the last 20+ years:)
I understand that feeling of frustration all too well.
Kathy it helps so much to know that others know how it feels. It’s so hard to describe but I know that other people know exactly where I am.
As your mother, this breaks my heart, but at the same time I am so proud of the way you move forward every day. You take care of others, your family and your friends. You give all of us courage each day. I love you. Mom
What can I say? It is what it is and I was raised to fight hard and I’m thankful for that. I love you too.