Handling My Memory Loss With MS
Last updated: April 2022
“I cannot remember the books I've read any more than the meals I have eaten; even so, they have made me” is a quote often attributed to Ralph Waldo Emerson. As someone who lives with cognitive issues because of multiple sclerosis, I find tremendous comfort in it. These issues, which include having difficulty with both long and short-term memory, started plaguing me around seven years or so ago. They’ve not only had a major impact on my career, but they’ve also really impacted my self-esteem and caused me significant anguish.
Coming along with a major exacerbation I experienced, my memory problems have persisted for more than half a decade now. Like most of my MS symptoms, they worsen with various triggers. While difficulty accessing my short-term memory is the most common problem I have, I also experience issues with my long-term memory. Short-term memory problems are extremely frustrating, however, difficulty accessing my long-term memory feels soul-crushing.
Long-term MS memory loss is devastating
At times it’s difficult to recall major chunks of my life. All that education. All those experiences. All of that life that I lived. It feels like it’s gone and it is an absolutely terrible feeling. I’ve talked to numerous other folks with MS that experience this problem and it’s absolutely devastating to just about every one of them. Anecdotally, it would seem to be a far more common problem than is normally associated with MS
Understanding that the memories aren't just gone
When I’m having difficulty with my memory, I try to tell myself that it’s not that I really can’t remember. It’s not that all of that information and all of those memories are gone. The problem is that I can’t access them at that moment. I’m not suddenly less intelligent, I’m simply having difficulty getting to my intelligence. It’s like having a high-performance car that drives incredibly well, but sometimes has difficulty starting. It’s frustrating and even saddening, however, it’s important to remember that it is temporary. I find it crucial to think that nothing is really lost permanently. Cognitive issues are just like any other issue with MS. When I experience foot drop, the problem is not that my foot is busted, it’s the communication between my brain and foot that is at fault. The same applies to cognitive difficulties.
Life is a journey
It’s easy to be tempted to think that the cause doesn’t matter. If I can’t access that information when I want to, isn’t that what’s important? As frustrating and difficult as it is to have trouble with our memory, I like to think of that quote that I started this with. Even if I can’t access all of my experiences and education every time I want, that in no way makes them less a part of me. That doesn’t mean anything was wasted. The truth is that most people experience difficulty with their memory as they get older. Unfortunately, some of us with MS have had to deal with it much sooner than most. No matter when you begin to experience memory problems, that difficulty does not negate those experiences. I cannot always access my education, but that doesn’t mean that I wasn’t still shaped by it in some way. Our journeys make us, even if we don’t always remember them.
Do you experience any difficulty with memory? What makes you feel better about it?
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: