The A, B, SEAS of multiple sclerosis

Some days I really think my brain needs oiling, or maybe it needs repairing. Oh, who am I kidding…I just need a new one! You want to know why I forget appointments, people’s names, a movie I have already watch…twice, and what was said a few minutes ago? I think it’s due to the fact that my brain looks like a block of Swiss cheese on my MRI scans with holes scattered all over the place. 

If you were to pour water onto my brain, I’m positive it would leak like a sieve all over the place. I think many of my thoughts have fallen into those holes.

I imagine words bouncing around in my brain, sliding from hole to hole and hitting road blocks in hopes of finding a way of escape. It’s kind of like they are stuck in a perpetual reality game of Chutes and Ladders.

What happens to the thoughts that don’t find a place to call home? Do they just keep rattling around in there all day long? It’s such a weird feeling to know the words I’m trying to say but can’t seem to connect those thoughts with my tongue. I know I frustrate people from time to time with my long pauses, lack of complex vocabulary and made up words. I frustrate myself too.

I’m thankful for the people who are patient with me and allow me the space I need to piece things together even when I get things all mixed up. The phrase “collecting my thoughts” never meant much to me until multiple sclerosis came along. Now I truly know what it’s like to sift through words, thoughts and ideas as I attempt to find something that makes sense.

But that’s my world now…a jumbled up, 3-dimensional word search game. The bad thing about it is that someone keeps switching the game board and jumbling up all the words. Just when I think I have things solved, BAM…there’s a new arrangement of letters and words to sort through. I call it my A, B, SEAS.

So, if you are looking for me today, I’ll be sifting through a sea of letters and words in my brain searching for…what was it again? Pancakes? Trashcans? Envelopes? Ugh…I think I need a nap.

7 replies
  1. Kelly
    Kelly says:

    I just redeem my brain as fireworks when I can’t think of what I was going to say. I’m like “oh the fireworks show is amazing, I’m not sure which firework I was looking at”

  2. Peggy
    Peggy says:

    When 1st diagnosed my neurologist showed us the info and said that they refer to the lesions that have permanent damage as ‘black holes’
    So when i can’t say what’s trying to remember i tell my hubby well that thought went into the black holes!

  3. Cathleen
    Cathleen says:

    Thanks Penelope for the perfect visual!
    I now can imagine my brain as a day at the beach, with my thoughts coming in nice and calm with waves on the good days. But look out on the “bad, stormy days”…when words & thoughts are churned up in rip tides!
    It fits me perfectly 🤯

  4. bunny
    bunny says:

    good morning ☀️. thank you for another great post 🥳.

    so so true how i feel blessed for those who are patient with me. especially when ,like you, have the word(s) on the tip of your tongue 👅 but they just don’t ❌ come out.

    frustrates the hell 😡 out of me. but i just slow down try to spit it out and if i can’t well…. i just move on.

    i’ll state, it’s the MS monster blocking my transmission 📡🌫😜


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