Can I just have permission to be mad for a little bit? I understand this is just part of my new normal, but that doesn’t mean I have to like it. Usually I can accept it. I really don’t have a choice. I have to live with it, but sometimes it just makes me mad. It makes me mad that I had to go look at trashcans in Target. Trashcans, of all things! I relive those moments over and over again. Realizing that my plan had gone awry and I needed to go to Target, getting in the van, pulling into the parking lot, walking in the store…. waking up in an ambulance, completely annoyed by the EMT who was cutting off my sleeves to hook up an IV. Sometimes it’s all just too much and it’s more than I can bear.
I have learned to live with frequent bouts of mild dizziness. I have learned to live with mild confusion. I have learned to live by my 7 AM, Noon and 7 PM alarms that remind me that it’s time to take my medicine. I have learned to compensate and adjust. I can tolerate a lot, but sometimes it becomes too much and I’m forced to admit that something isn’t right.
It started Easter Sunday. In the middle of the message, I was looking at the stage and suddenly my vision blurred. Words began echoing inside my head like a ping-pong ball being bounced inside my skull. I told myself to focus and regain control. Refocus, refocus, refocus. It wasn’t working. My eyes fell down to my lap and I saw my hands drop like dead weight off my lap. I tried to pull my hands back but I couldn’t move them. I wanted to tell Johnny something was off. I tried to speak. I couldn’t. I leaned in close to him and he looked at me. Words weren’t needed. He saw it in my eyes; tears, confusion, fear, anxiety. He knew immediately, we both knew immediately. Something wasn’t right.
A couple of months ago I made a phone call for my grandmother. She wanted to know how much her pedicure would cost. I called, I asked, and I hung up. My grandmother asked how much it would cost. I couldn’t remember. The voice inside my head said “get it together, what did she tell you?” Try as I may, I could not recall what she had just told me.
Just a few weeks ago I was preparing the family for our trip to Montreat. The boys had packed their own bags and Johnny had already set aside his clothes for the suitcase, so I just needed to pack my own things. I stood in front of my closet. I just needed a couple outfits for running, several pairs of shorts and shirts and a couple of warmer things for the evenings. I kept telling myself that was what I needed, but I stood frozen at my closet, not knowing how to proceed. This was not your average “what do I want to wear” moment. This was my “I do not comprehend” moment. I could not make the connection. I tried so hard, but all I did was move things from one pile to another and then back again. Progress was painstakingly slow. I tried all my techniques from rehab, breaking it down into small steps and talking aloud as if walking myself through the task in order to maintain focus. It didn’t help. I could not figure out how to pack my suitcase.
Last week I walked out of a store. I looked at the parking lot and realized I didn’t know where I parked my van. Logically I knew I could retrace my steps and find my van the same way we look for our keys when we lose them. I tried to picture pulling into the parking lot, but the picture was blank. I had no memory of driving into the parking lot. I had no memory of parking the van. Here I stood, bags in hand and I couldn’t remember the events that got me there. One problem at a time; first I had to find my car. I wandered the parking lot pushing the lock button on the remote so the horn would sound and I followed the sound until I found my van. Later I told Johnny what had happened. He asked me what store I had been in when this happened. I couldn’t tell him where I was. “That is a problem,” he told me. Something wasn’t right.
This is where I walk the balance beam known as Mild Traumatic Brain Injury. The damage is enough to make simple tasks difficult and sometimes impossible, yet my cognitive abilities are still strong enough to identify that I used to be able to complete the task but now I can’t. This is my boiling point. This is where I just get mad. I know I’m fortunate the injury is only mild, but it still makes me mad when I can’t pack a suitcase, or remember what the lady on the phone just told me, or find my van. I spent 32 years of my life one way and now I’m different and I’m not used to it, and sometimes I just want permission to be mad.
I’m a work in progress and adjustments are always going to be part of my life. Adjustments to my new normal will include adjustments to my medications. My neurologist can’t tell me what is happening right now. There are no blood tests are X-rays to identify the problem. We all agree something isn’t right, but we don’t know what. These episodes could be unfortunate side effects of my medication or they could be break through seizures. There is no way to know except to push my body to a new threshold and see what happens. It’s kind of like House has just told Thirteen and Cameron to double the meds. If the patient’s symptoms persist more rapidly then it’s a medication side effect. If the symptoms stop then it’s break through seizures. That’s all fine and good when I’m watching it on TV. It’s not so great when I’m the patient, not to mention that the high doses of medication make me want to crawl out of my skin with irritability and anxiety. (This pleasant side effect also makes me pure joy to be around…NOT.) My body’s response, over time, will reveal the answer. The hardest test for me and for those around me, is surviving the time it takes for my body to reveal the answers.
I’ve been down this road before. Previously I traveled it in privacy, hidden beneath silence and shame. I survived it, but I also have scars from that well-worn path. This time I’m going to try a new road. I’m taking the HOV lane and giving carpooling a try. This time I’m bringing you with me. Those who have read my story have touched me in ways that I cannot describe. You have opened your heart and your mind to me. You have voiced your love, your concern and your acceptance. You have allowed me, invited me and even empowered me, to accept who I have become over the last few years. You have brightened my life and my path. I hope you will allow me to bring you along as I cross this speed bump in my journey. Life is not a sprint. Life is a marathon. This is my marathon…and the finish line is around the corner…somewhere…it’s just not in sight quite yet.
© Gatewood Campbell, July 2011