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Wednesday, May 12, 2010

bvFTD defines Me

Lime Jell-O - Who am I?

I was on the phone with a friend last night. She is going through some family issues, and needed some cheering up. There is an irony there somewhere since I have not been the cheeriest person on the block lately. In any case, we got to talking about this blog, and why I use the term "Lime Jell-O" to describe what is going on inside my brain.

She said that I am letting my dementia define me, and that I am still me.

I disagreed. Here is why.

First I guess I have to explain that I think I am defined mostly by my personality. That is what makes me... ME.

My bvFTD has changed my personality. I am no longer the self-starting powerhouse who could tackle anything. I am more tentative, and lack the overbearing confidence I had before. Some have said I am actually easier to get along with. Hmmmm... anyway, I occasionally have some pretty radical emotional swings. Luckily not too often, but often enough to have effected a few important relationships in some very negative ways. I am no longer capable of working. I still know a lot of stuff, but I can't always remember it at the time I want it, and I also sometimes search for words to describe it. I have always been opinionated, and set in my ways. I am becoming even more so. Glenn Beck is starting to make sense! I am no longer in any way shape or form a self-starter. I like sitting and watching the grass grow. I cannot do simple mental arithmetic.

What I am getting at is that I think with a physical disability your sense of self can remain unchanged, or at least within some control. I still have some control over my Diabetes. With mental illness, and especially dementia, the control of your actions, behavior, attitude, knowledge, and even your basic thoughts and opinions are taken away from you or modified by the disease itself. I am lost somewhere within my bvFTD. I am not the same me as I would be without the dementia. I am my dementia.

I am, of course, the me I am today, but the me I am today is governed in every aspect by bvFTD, not by me.

Does this make any sense? My friend didn't think so ; )


  1. I'll define you for you. You're my Dad. The best in my opinion and I'm pretty sure you have a mug somewhere to prove it. Just keep that in mind, and I'm sure you'll do just fine. Love you poppabear

  2. Thank you for your belief in me. I love you, and "Yes!" - I do have that mug, and the handkerchief too.

    You got me to rethink my definition of "ME", but I came back to the same conclusion. I guess every individual sees me differently. Everyone sees their own version of "ME with FTD", or even just me. I came up with the analogy of sunglasses. When you are wearing sunglasses everything looks different to you. Everything you interact with is changed by the sunglasses. You may not notice, or even forget you are wearing them, but everything still looks different to you. When others look at you they see you with a kool pair of sunglasses on.

    Thinking is hard. I think I need another cup of coffee...

    (I had to change the way comments worked because I couldn't comment on my own blog.)

  3. To me you are a 'true' friend. A 'real' friend. Not just one of the plethora of 'acquaintances' that most other humans refer to as friends. The kind of friend I would drop everything and drive across multiple states to help if he needed it. You are one of the microscopically few true friends I have on this planet.
    Our children have grown up together. We have grown up together. We have been through the 'wars' together. You've taught me to 'trust the force' (or 'spirits' if you prefer) that surround the two of us, even when it is most confusing.
    Thank you for the Blog. It is something I would do. (Hell! It’s also similar to what I have done in the past to 'debrief' myself on certain things that I shared with you). Thank you also for you.

  4. I'm really glad you decided to do this. I may get you a puppy anyway, but until then Sam is available for visits! I'm still thinking about the "me as me" and "me as FTD" conundrum. I'll get back to you on that.

  5. Thank you, Crazyegor. The feeling is mutual. Your journaling certainly influenced my decision to try this.

    I am not so sure our youngest kids will ever really grow up. For that matter I have my doubts about you ever growing up either. I am totally mature, though ; )

  6. Thank you, Matilda. Glad you found this place. I am looking forward to seeing Sam real soon. You too ; )

  7. Every single one of us changes in some way minute by minute and day by day. No exceptions. The only difference is the details. That said, who you are at your core, that essence, has not changed. A dear friend, a fellow nature nut, someone who loves to share nature with others, and a person I can always talk to. That hasn't changed one bit.

  8. Thank you for the comment, Eileen.

    I think I will have to revisit this topic in the future. It seems there may be more than one definition of ME.

    What you bring up about change is an interesting aspect to explore further.