Peeking Through the Cotton Balls
I recently published an article by Barbara Smith, which has been very popular, and she’s now written this blog post about cotton balls! We all have a way of describing mental clouding; when your brain feels like quicksand, full of fog or wrapped in a ball of cotton. Barbara explains how chronic illness affected her memory and concentration, and the steps she’s taking to clear some of the fluff out of her head!
I did love school though, and reading was my favourite pastime. I excelled in spelling and was often in spelling bees (I don't even know if they have those anymore). I learned early on that I had a photographic memory with respect to words. If I wrote the word down several times, taking “pictures” in my mind of what I was writing, I would more often than not be able to recall the word at a later date, simply by closing my eyes and seeing the word as I had written it. I thought it was pretty cool, but I also realized that other kids couldn't do the same thing. I became a voracious reader in my teens and both my written and spoken vocabulary increased because of this hidden talent.
I was in my early thirties when I decided to go back to university. Up until that time I had been a receptionist and then a legal secretary, but neither of those careers was going to support myself and two young children. So I hit the books once again and my photographic memory came to the forefront, enabling me to maintain very high grades. I was quite proud of myself, raising two young children on my own, going to university full time, and being close to being on the honour roll every semester. But I struggled with day-to-day living and learned quickly that I had to prioritize. The kids’ needs came first, then school, and everything else just got done if and when I had the energy. And then came the first crash.
I was toward the end of my second year of university when I started to falter. That is when the cotton balls first began to make their appearance. Nothing big, just bits and pieces of fluff here and there that would cloud my memory. Having to write things down more, because I wasn't sure if I would remember when I needed to. Going into a room and completely forgetting why you went in there in the first place. Just little bits and pieces that I assumed was either from growing older, or because I had a busy schedule (or both). It was becoming harder and harder to maintain a schedule and I started having times where I barely slept, then I would rebound and sleep a lot. By my third year, these cycles were becoming more frequent and nonstop. I would swing from one to the other and back again. At the same time, I was having more and more trouble concentrating. I became forgetful and had to keep a calendar to record appointments and phone numbers, something I had never really done before then. It was becoming extremely difficult to keep up with the reading material for my classes, and even more difficult to remember anything I had read. I took copious notes, but because of the amount of time spent doing this, I just couldn't keep up with the class. I was ill a lot of the time and just kept going downhill, until I finally crashed during my second semester of my third year.
I literally hit rock bottom. I was physically exhausted in a way I can't even begin to describe. My legs were so weak from exhaustion that they wouldn't support me. A simple trip to the bathroom meant holding onto anything and everything for support, in an attempt to prevent a really bad fall. There was no warning. Just one minute my legs would be under me and the next I would be on the ground.
Mental exhaustion was total and complete. I lived in a fog and couldn't remember what I had done just moments before. I loved to watch movies, but now I would have to watch a movie four or five times to actually see the whole thing. Every time I watched it again, there would be parts that I didn't recall seeing before, almost like I had been out of the room when that part had played, although I hadn't.
I lived with a once quick and fast mind slowed down to a crawl, stuffed full of cotton balls for more than two decades. Most days I couldn't see past the cotton balls, no matter how hard I tried to push them aside. I couldn't read, or if I did I didn't remember what I had read. Nothing made sense to me. My life revolved around my calendar, with everything written down because I knew I wouldn't remember. I developed strict routines so that I wouldn't have to try and remember later in the day if I had missed doing something that was important. I came to heavily depend on my photographic memory and learned to take “snapshots” of my actions, so I might remember things later on. One example of this is when I take my medications. They are always taken in the same order and I try to take a picture when I take my pain medication, so I don't accidentally take too much. Most of the time this works, but there have been times I have had to count my pills out because I simply couldn't remember if I had taken them or not and the cotton balls were clouding my photographic memory.
About a year ago a new medication was added to my drug regime. It was initially prescribed for anxiety during a time of stress, but it seemed to marginally improve my sleep, so my doctor and I decided to keep it in place. Shortly after that there was a sudden move and I crashed for the second time, back in a wheelchair to prevent falls. I am still in the wheelchair over a year later and may not come out of it this time.
About six months ago I started playing a word unscramble game. Nothing much: I just do the two daily challenges, but it is a little something to exercise my brain. At first it wasn't easy and yes, sometimes I cheated and used an online site to unscramble the letters. But little by little I started noticing something amazing was happening. Not all the time, and not often, but every now and then I get a peek through the cotton balls. I will look at the scrambled letters and be able to put together a word right away using all the letters. On a really good day I can get three words, but most days I have to work at it. Still, this is better than I was a year ago, better than I have been for more than two decades, and for that I am thankful. I doubt I will ever be that voracious reading teenager again, but peeking through the cotton balls every now and then gives me hope and a deep-seated pleasure that only those who have lost everything can appreciate. I still can't always tell you what day of the week it is, I don't always remember my address or phone number, and I still go into a room and forget why I went there. But those brief glimpses of the person I used to be assure me that that person didn't die with the onset of this illness. Like going through the burned-out remains after a devastating house fire and finding that one special memento that survived intact, completely unscathed, ready to be loved again. I have found a part of myself that I thought was lost forever to this debilitating illness. And that feels so good!
You can read more about my life journey in Finding the Strength. Louise provides information about brain health in A Self-Help Guide to Myalgic Encephalomyelitis. Please share your experiences and tips with each other on the M.E. Support Facebook Page.