Using It, Still Losing It

23843263_sSo here’s the background. When home computers first became available, I was smitten. (Yes, children, there was time when personal computing was but a glint in Knot’s beady little eye.) Wow! I could do amazing things, I could write a program in BASIC to balance my checkbook!

A few years later I was in a fellow grad student’s lab in the biology department of the university in Los Angeles, and he showed me how he had this new thing on his computer where he could exchange data with a computer in Washington D.C.! And he had a stylus that he moved around on a special flat surface and he showed me how to used it. I could move the computer cursor with a magic wand!

Another few years and I was working in a high-tech company started by a couple of physicists that developed and produced collimators. They had an astonishing program on one of the engineer’s computers that could send telexes without the telex machine! I was the only non-engineer allowed to use it.

I was paddling around in a sea of tech-ish delight. I never took courses, but I learned on my own and by watching people who knew what they were doing. In the 1990s and 2000s I was very competent with both hardware and software. My hobby brought me to the little niche of providing computer advice to nuns around the country, sometimes visiting their convents to set up networks and solve their connectivity issues. I even wrote a database management app in MS Access that handled the medical, psycho-social and educational records of the children in a residential facility for severely brain-damaged children that is still in use today.

In short, I spent the first four decades or so of personal computing developing “mad skillz” in everything informatic. But, as Bobby and Shirley Womack wrote and the Rolling Stones and others sang, “It’s all over now.” (The image breaks down quickly unless you consider informatics my cheating girlfriend, but never mind.)

Yesterday I decided to start in on digitalizing my household records of the past seven years. I got one of my helpers to work with me on the project. The idea was to scan everything into searchable files and save them on my hard drive with backups everywhere on God’s green earth and above it (I’m not a fool), then shred the paper. Save space in the house, be able to produce old documents on demand, making it easier for me now and for whoever needs to sort out my affairs when I die. Not a big deal, right? Easy peasy, right?

Not exactly. I forgot how my home scanner settings work. I forgot how to scan to a pdf instead of a jpg or bmp. I forgot how to make new sub-directories. I forgot the quick way to rename a file. I got confused in the middle and forgot what we were doing. I was a touch past the brink of tears. My helper became frustrated with me and started bossily telling me how to do things her way.

I saw my not-too-distant future and I was deeply saddened alongside my intense frustration. This was undeniable evidence of my slowly increasing cognitive impairment. (Like just now, for example, when I couldn’t remember the phrase “cognitive impairment” and had to google around a bit, trying lots of different words until I found it.)

My neurologist and GP don’t believe me. (I am getting really tired of singing that song, but it’s not the subject of this post.) The MMST* administered by my neurologist didn’t really show anything, but acing the MMST doesn’t require very high functioning. The fact that I had to stop my work as a translator after having achieved a certain status in my niche field doesn’t seem to count. The frustration that brings me to tears is not significant to them.

A few people, including one of my doctors, have told me that if your pre-impairment baseline was higher than average then your impairment is an average person’s usual functioning. They intend for that to comfort me. It does not.

I am trying to reframe what is happening to me as an opportunity to cast off my intellect-dependent self-image and identity and turn to other qualities to define myself: emotions, empathy, perseverance, endurance, generosity, kindness, and so on. So far, it’s not working.

* The Mini Mental Status Test.
Image copyright:  Andrea Danti

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20 Responses

  1. John Boyd says:

    “Never give up. Never surrender.” Your current skills & abilities today FAR surpass anything I have ever had, despite trying to “program” an old Commodore Vic 20 years (& years & years) ago….just don’t stop trying to exercise those mental muscles. Or stop writing…..

  2. stacey says:

    I struggle with this daily and I’m a tad younger, chemobrain is a real thing and I wish more patients were told about this fact. Oftentimes they don’t know until they mention in passing that they are having memory problems, etc. and the doc says oh yeah, chemo can cause brain farts. Yay. Like you, I write, I do crosswords, anything to keep mentally agile, but it’s a struggle and it’s frustrating. Hugs, you can do amazing things and will continue to do so.

  3. Colleen says:

    Oh my dear friend Knot, you are far from average on normal on so very many levels. I feel your frustration and hear your pain. A super star savant in a former life, I, too, feel my brain cells slowly leaking out my ears. I pause every few sentences and start describing the word I want to say. Fortunately, my spouse is pretty good at this game, the kids have no patience. Must cancer take away EVERYTHING from us? I hope and pray your project gets back on line and, as a self proclaimed techno turd, am amazed at your prowess! ((hugs))

  4. Carol Miele says:

    Well Claire, I can tell you I’m in a awe of you. Anyone who could set up a program in Access has my undying admiration. I used it sparingly when I worked as a Quality/Risk Mgr. I relied more on Excel for date collection & resulting charts, graphs & other data display. Despite the fact that I too have forgotten nearly as much as I previously mastered, I think I’m still a valuable, contributing member of society & the world-at-large. And so too are you my dear….we are more than the sum of our former skills & job worth.You have many admirers, near & far…don’t disappoint them by devaluing yourself or your self-image. You are a treasure, to be cherished by us all.

    • Knot Telling says:

      Thank you, Carol; that’s very kind.
      And thank you for coming to visit my site. I hope you’ll browse around and come back again. I also have a standing invitation for my sisters-and-brothers-in-mets to write a guest post whenever they feel like it.

  5. Dorry says:

    “The frustration that brings me to tears is not significant to them.”
    I’m too angry about the loss to comment.
    Love to you.

  6. Lois says:

    I feel your pain. I have had chronic fatigue syndrome (for 26 years so far) and aside from being so tired I can barely stand it, I have lost a lot of brain power. I did not have chemo for my breast cancer, but the brain power is still gone. Very frustrating. I figure out something on my computer, but I can’t remember how I did it, so the next time, it’s the same thing – work and work until I stumble upon it.

  7. Kathi says:

    Ah, my friend, I can so relate. It’s been frustrating to make my docs understand that, not only do I have less physical stamina now, but I have less intellectual stamina. And I really, really hate the ol’ “It could be worse, be grateful for what you’ve got” pap. I don’t need lessons in gratitude. I am grateful for what I’ve still got. But… It still means loss. It still means who we were is not who we are now.

    Love you, sweet friend.

  8. I have found that being really good at what i did several decades back, and what i can now do at age 64 isn’t really to my advantage to look at. Can i do what i used to mentally? usually not.

    One of the guys i read said “Do you know why it takes longer to remember or to use the cognitive powers in older age? It’s because our computer never gets cleaned out or the memory doesn’t get a booster. . There are now so many more neurons in the way on the memory part as we age , it just takes our brains longer to find the data”

    I found that comforting somehow. Even physically, i certainly cant do what i could 30 or 40 yrs ago. Yet i accept that. Accepting the mental part though……not always so good at that one.

    My Mom had and died from Dementia. She lost all cognitive functions. I’ll take what i have now over that any day.

    (((((((((((((((((((((((((( Luv Ya Knots)))))))))))))))))))))))) the old guy in Tx

  9. Gail Speers says:

    I’m sorry. I can relate. How do you find learning new things? I have switched my focus to learning rather than dealing with obvious declines in capability. I have taken up beadwork and jewellery making in various media. I hope you find some peace with this loss… Best to you,

  10. Maxine D says:

    Dear Knots – I hear your grief and your anger … that must be not only frustrating but also scary! I still am in awe of how you can write, albeit with huge effort, from what you are saying.
    DH has what we (truth be told, I) call “cheese brain” – his memory is full of holes, and they are not always consistent either, as what he remembers today he can forget tomorrow, but recall again next week… like Colleen’s spouse I am getting good at the ‘find the word’ games :-(. Don’t know if it is age or low levels of the precious O2 that is doing it.
    I will continue to pray for you
    {{{{{Hugs}}}}} and blessings

  11. Carol Miele says:

    Thank you Claire. I’ll let you know if I get new writing ideas….they come & go rather unexpectedly!
    Your metster friend & admirer, Carol

  12. Susanne says:

    Oh, Claire. I wish I could hug you and help you with this project. I love you. Even if you have to google for phrases now. You’re still wonderful to me.

  13. Patsy says:

    Oh, how my heart feels for you. Of all the things I have read since being diagnosed, I identified with this post so much. I am so frustrated at not being able to do the most minimal things on my computer. I have found this deficient to be a real issue in being a research advocate, since poster sessions are involved, etc. As a result, I have said no to opportunities where I think I could have made a difference. I have the testing scheduled, but don’t expect to get much out of it either.

  14. Mandi says:

    Oy. I feel you. What is comforting in being average when you have never been average? I struggle with chemobrain, makes me goofy crazy when I can’t remember words or names and put a sentence together.

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