Dazed and Confused: The Cognitive Issues That Come With My Multiple Sclerosis
This post will not outline my adventures with medicinal marijuana nor make reference to Cheech or Matthew McConaughey. This post is about the cognitive issues that have turned my life upside down. The cognitive issues that saw me transform from a successful business woman with her own consulting company to someone sitting on a couch who can’t feed herself some days. This post is not meant to make you feel bad for me. Its purpose is to provide insight into the things that are invisible. When someone says, “But you don’t look sick” or “But you look so good,” they don’t see the frayed wires in my head wreaking havoc on the way I perceive the world.
I have been highly intelligent my whole life. When I was younger, I thought with such clarity. I had a photographic memory. I could memorize pages and pages of information and regurgitate it on exams or meet someone and two years later tell them what they were wearing when we first met. Then as a teenager, the fog started to set in. I started having attention issues. At first I noticed I had difficulty paying attention to what people were saying to me, and I had to ask them the same thing multiple times because I couldn’t remember them telling me the first time. This caused me great frustration, but I learned to adapt. I managed to get through university on the dean’s list and graduated with honors. My attention issues became part of who I was, and after a while I just accepted them. I still remained highly intelligent and did quite well for myself after graduation.
Fast forward a few years, a thick fog sets in. Doctor’s have diagnosed me with ADHD, low iron, and low vitamin D. Then comes the multiple sclerosis (MS) diagnosis. The clarity that existed when I was younger has evaporated and is replaced with what feels like a cloud covering my brain. Sometimes the cloud would dissipate and I would excel. I could do a lot in one day of clarity. That kept me going at work, and no one had any idea I was struggling to keep my poop in a group. One day the cloud set in and didn’t go away. I would sit at my desk and stare at my screen for eight hours. I’d shut my door so my co-workers couldn’t see me cry. How could I read and edit procedures if I couldn’t pay attention or retain any of the information I had just read? How could I take minutes in meetings if I couldn’t follow along? Going to your boss and telling him you can’t do something because your brain won’t let you is quite difficult. I took great pride in my work. I based my entire career on the way I thought and processed information. Who was I without my career? Who was I if I couldn’t think the way I used to? I finally had to make the difficult decision in consultation with my neurologist to leave the workforce. What was I supposed to do now?
I grieved for the person I once was. Letting go of that was not easy. But if I was to get on with my life, I had to let that girl go and focus not on what I can’t do anymore but what I can. I’ve purged my life of things that require a lot of attention and cause me stress. I’ve even stepped down from my role as a director on the provincial Board of Directors for the MS Society. I still have a lot to offer, just not in the same way I did before. These days I focus on my passion for photography. It’s what keeps me going most days.
People have no idea what’s going on inside of my head. They see pictures of me on Facebook having fun and going on adventures. I try to enjoy life as best I can. What people don’t see is me struggle to get out of bed every day. The disorientation that gets so bad, I can’t drive most of the time because I feel like I’m drunk. To the outside world I look “lazy” because I don’t wash my clothes, or cook or clean. It’s much easier to laugh along with them than it is to try to explain. Truth is, I wish I could do all of those things. Some days I sit on the couch or in bed and don’t eat until my husband gets home. It feels like the part of my brain that is responsible for initiating things is broken. I will sit for hours on the couch staring at my phone, and when I realize what I’ve been doing, it makes me frustrated.
I can’t easily switch between tasks. My processing has slowed down. I feel like I live in slow motion, trapped inside my own head. I don’t know what I’d do if it wasn’t for my friends and my husband. Things are much easier when I have an external stimulus to assist me in doing things. Most of my adventures are usually planned by someone else. I love being with people. I’m a social butterfly and interaction with others makes me feel somewhat normal. I joke and say I want a tall, handsome, shirtless caretaker. Although it’s a joke, there is a hint of truth in there. Some days I just want someone to take care of me.
Word finding has been interesting. I used to get so frustrated when having a conversation and not being able to find the word I’m trying to say. Now I find it amusing, and my friends and family are very good at interpreting me. Before writing this post, I had to ask my husband the name of the actor who was in “True Detective,” “Dazed and Confused” and the car commercials people make fun of. He knew right away I was talking about Matthew McConaughey, god love him. At Thanksgiving I was trying to explain to my best friend that I had washed the thing you put on the table that keeps it from getting dirty. “The tablecloth?” she asked? Yes, thank you. My life is like a constant game of charades.
Some days I have a pity party and dwell, but most of the time I am thankful I’m alive and have so many wonderful people in my life. I love living. I love experiencing new things. I may need help a lot of the time, but that doesn’t mean I’m helpless. I have a twisted sense of humor and that helps me get through a lot of what life throws my way. I enjoy making others laugh. Bringing joy to others gives me a sense of purpose. Most of the time I’m dazed and confused, but I always maintain my sense of humor.
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Thinkstock image by Marco_Piunti