I can’t tell you how many times I sat down to write a new blog post and absolutely nothing came to mind. I would come up with ideas and type it into the Notes app on my iPhone so I wouldn’t forget what I wanted to write about, but when the time came to write, I looked at what I had saved and had no idea what the words meant or what I wanted to write about. This is what brought me to write about “The Nothingness.”
I remember (yes, I can still remember things from a long time ago) a movie from 1984 entitled, “The Neverending Story“. It follows a boy who reads a magical book that tells a story of a young warrior, Atreyu, whose task is to stop a dark force called “The Nothing” from engulfing a mystical world, Fantasia. “The Nothing” was just as it sounds, just NOTHING.
So now, in addition to my ever-present “BRAIN FOG”, along comes “THE NOTHINGNESS” (that’s the only name I could come up with) and takes up residence. I have to tell you, writing the title of this blog post, I started to wonder, “How can I talk about something taking up space in my brain when it’s NOTHING? Yeah, if you’re waiting for me to explain that, have a seat and make yourself comfortable. It’ll be a loooooong wait.
Because of my “BRAIN FOG” I continue to utilize the magic powers of my girlfriends, Siri and Alexa. Without the technology they possess, I would be hard pressed to continue living alone. To add another wrinkle, my Diabetes has recently gotten out of control (or I should say, due to MY forgetfulness) and I’m back on insulin. I looked at that as a huge failure on my part but as my Endochronologist stated, “it happens!” So now, I have 4 reminders at different times of the day and evening that remind me to check my blood sugar and take my insulin. If I don’t do it exactly when I’m reminded, I forget, so I’ve now included backup reminders.
I still have the reminders as to when to eat breakfast, lunch, and dinner, 2 reminders per day to remind me to play my Favorites Playlist in case I go into a “BRAIN FOG” and also a daily reminder to bathe. Without those reminders, I would be hungry, foggy and stinky. Nobody, especially me, wants that!
But let’s get back to “The Nothingness.” If you are familiar with my Alzheimer’s Journey, you have heard me speak and write about my Brain Fog. The Brain Fog is more of a short-term hindrance. It would come and go but never completely overpower my brain. It became something I got used to. Now, more times than none, my Brain Fog is followed by “The Nothingness.” And yes, it is exactly as it sounds . . . it’s a whole bunch of NOTHING!!! I don’t think I’ll ever get used to that.
Think about sitting in a room with no windows, at night, wearing a blindfold over your eyes. It is the blackest of black. You can’t see anything . . . NOTHING, except the blackest of black. That’s my NOTHINGNESS. It’s the only way I can describe it. I am going to have another appointment with my Neurologist to discuss this. I’ll be sure to post my results.
The only time “The Nothingness” is not present is when I am trying to go to sleep. You would think that would be the ideal time for your brain to shut off, take a break, but NOOOOOOO! That would make too much sense. Instead, I’m interrupted by bad dreams and Hallucinations. I KNOW, RIGHT???? Waking up at odd times of the night, only to find Shadowy figures standing at the foot, and sometimes on the side, of your bed is not something you want to wake up to. I then wonder, how / why can I remember THAT? I DON’T KNOW, but I wish I didn’t.
I have found the more I am engaged with others, helps me to stay focused. Seeing and talking to friends and family makes me happy, fills me with joy and helps to keep me Brain Fog-free and Nothingness-Free. It’s always the little things that make the biggest difference.
And then, there’s music. If I can leave you with one thing, it is this . . . take the time to make a playlist of your favorite songs, not just songs of today but from years ago.
When you are having a tough time, a sad time, a confusing time or just want to reminisce, play YOUR music, YOUR playlist, the songs of your life. I hope it can make the difference for you that it does for me.
Until Next Time,
PEACE!
B
Bless you Brian for giving us insight to what is going on in your journey. I’m learning the more I know about others journey helps me be a better caregiver.
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Thank You, Janet!
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Thank you for your words Janet!
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So sorry your are experiencing this feeling of nothingness. I’m glad your able to describe because I’m sure others can relate. I love your idea of making a play list of the songs of your life. I’ve been making one on Spotify and I love it. I use it to calm me down and relax.
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Thanks Sandra! Music has always been a part of my life and now it is still there helping me along my journey!
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I look forward to your podcasts. God bless you!
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Thanks Retta!
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Thank you for continually helping me to better understand how my mom has felt and is feeling. She is now in stage 6-7. I am 52 and feel that I may end up going through the same thing as her. I am so sorry for what you have been through and are going through. Please know that you ARE helping many, many people.
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Thank You, Annette. As long as my words and experiences continue to help, I’ll continue to write. I hope you won’t have to go through that, but if you do, you’ll have lots of company.
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Thank You Annette. I wish you peace as you go along your Mom’s Journey right by her side!!! 💜
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I just stumbled on your post. What a beautiful explanation of what you are experiencing and I’m so inspired by the tools you are using to live each day. I’m going to put some in place for my husband although he has always, pre-Alzheimers, been adept at ignoring alarms and reminders…lol. But it’s worth a try. Please keep writing.
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Heather, thank you for your comments. I appreciate them.
Just so you know, I have alarms that remind me 10 minutes AFTER the alarm, so I understand!
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Hi Brian, I have just come across your blog on the DAI FB page. When I read it, my immediate thought was I could have written this. Like you I am a dementia advocate, living alone with dementia (mine is FTD though). I use alarms in the same way as you do, to get me through the day (eating / drinking/ bathing / toileting). I have prepared my music list, that I play regularly and also a physical and cognitive exercise program, which Google prompts me to do each day. I too recognise the nothingness and keep myself really busy with my advocacy work and social activities to avoid slipping into the nothingness that takes over as soon as I don’t keep myself active and grounded. It was great to recognise my life as it is now, in your words. I felt as though I had met a kindred spirit. Thank you.
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Thanks for your Words!
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Hi Brian – Your first paragraph said it so correctly: writing a note and then wondering what you meant. I even wondered once if I’d picked up someone else’s piece of paper, I didn’t the poor handwriting was mine! Where you and I differ is nighttime where I can wake three or four hours after going to bed and lying there wide awake. Then I too have nothingness. I have a brain that feels like it’s going round and round quickly but generating nothing. It was an excellent blog post, Brian, thank you. I hope you are doing okay! Jim Mann, Canada
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Thank You, Jim!
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Don’t know if you get this reply or not, Brian. But thank you for sharing.
Carlen Maddux
http://www.carlenmaddux.com
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Yes I do and Thank You very much!
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Reblogged this on Anniegoose's Blog.
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