Tuesday, October 25, 2016

10/25/16-Changes and Dualities


 
At first glance those 2 pics probably look like typical fall scenes of the desert on a cloudy day with mountains in the backdrop. But look again. Did you notice the snow covered peak?



Things aren’t always what they seem.

That’s Charleston Peak of the Spring Mountains in the Humboldt-Toiyabe National Forest. A group of us are camped on the edge of Pahrump, NV on BLM land, and this is our southeast view every day. I love boondocking! What a blessing.

Here’s an evening view.


 
TBI HS SYMPTOMS

It is the same for each of us. Right? If you look closely, we may not look the same as we did from a distance. If you get close, we may not appear to be the same.

I haven’t written a blog post in a while because I can no longer do it the way I used to. I’m grateful I can still write, but I will be honest with you….

I thought my days of blogging might be over because I can no longer figure out how to do my old system. I used to categorize things in folders by dates and pull ideas for titles from this and that, and then put it all together to write sequential blog posts. It appears I can no longer connect the dots to do all that. So I haven’t been writing. At all.

But I don’t want to lose my voice.

At the same time I’ve been disappointed about not keeping my blog current, I’ve also accepted that it is increasingly difficult for me to socialize. Socializing, at least at the level I enjoy, is painful and I don’t know how to explain it. I’ve seen that same phenomenon in Alzheimer’s patients and those with dementia (which now applies to 2 of my 4 sisters), but that is not my diagnosis so I’m a bit perplexed by my string of latest symptoms.

In the book, Still Alice (as I recall it) Alice becomes increasingly uncomfortable with socializing. She makes mistakes in conversations, gets lost going home, and has the sinking feeling she wasn’t present – at least like she used to be. Trying to piece together the event and conversations after the fact is pretty much impossible, and scary. The author does a brilliant job of showing how Alice retreats further and further into herself. Alice used to be a brilliant professor and public speaker. Eventually however she is no longer comfortable around people at all and only visits with a select few inside her home. Even that ability inevitably declines for her.

These days, and this is difficult for me to share publicly, the ONLY place I feel comfortable with my cognitive skills is in or near my van. Slow processes and confused cognition is not an issue inside my van. I am at peace when alone with my two dogs. It may take me 3 tries and 20 minutes to make a cup of coffee but who cares? Certainly not my beloved Nonni or Bentley. Inside my van it doesn’t matter if I make mistakes and I can take all the time in the world to do whatever I want. In the comfort of my van I can still do a LOT – including writing, but I don’t want that to become my only world. I would miss out on so much!

“Out there” I get to meet such lovely, wonderful people. I meet more and more all the time and I don’t want to miss out on that. I also don’t want to miss out on the laughter, the lively exchanges, the love and care and bonding. We have such a beautiful time together out there, here – at the campfires, visiting each other’s rigs, hopping in to someone’s vehicle to run in to town to do errands. I don’t want to feel sequestered in my van while all of that is going on. But I don’t want to be in pain either.

I get so confused around large groups of people. And I might as well forget trying to function in crowds. Going to the store, or out to eat, even with support, is growing more and more stressful. I’m trying.

I’m trying because I don’t want to lose my voice. I don’t want to lose me.

I think, just like the pictures, when people see me they don’t see all that. Until you get close.

I rely a lot on those I’m close to, and increasingly I’m becoming aware how unfair it is to them. Just this morning one friend walked Mr. Bentley for me (he can no longer see or hear so has to stay on leash), and another friend dropped by to say good morning – all while I stay seated on my bed with the door open because I’m having a hard time processing today. I don’t know why I am, it just is what it is.

In my van I am safe and comfortable. Another factor out there is that I’m never sure whether my radar is working so good or not. Is the crowd getting that loud and out of control or am I just getting that confused? Is the traffic really that bad or am I just on sensory overload? I suppose it doesn’t matter which is correct, the result is the same. My processes start shutting down, and sometimes it literally hurts. There can be what feels like intense pressure in my head, spinning in my ears, and then the inevitable nose bleeds.

In the quiet of my van I have none of that. Well, sometimes, but not usually.

THE REST OF THE STORY

In an effort to not lose my voice, I’m trying new things to go with my new symptoms.

DAILY BLOGGING
My posts will probably be short from now on, but they will be more frequent. That may sound like a lot to take on, but by writing more frequently I won’t have to track: When was the last blog post written? What was it about? What was I going to write next? What material do I have for the next one? What pics do I have to go with it? Are they already edited? Then, once I got all that figured out, my blog posts were taking me 10-12 hours to write and produce each one. Yikes!

I have no idea how the new shorter ones will read, but I can absolutely promise you there will be great joy in being able to write them. I don’t have to worry about keeping up with planning the post, it simply becomes my voice for that day. That brings me great joy.

TWITTER
I’m also going to try and tweet my symptoms as they occur. I think it will be helpful for me but I’m not even sure I will remember to do it, especially if I’m symptomatic. Plus it may get to be too much trying to record all that. We’ll see. I doubt it will be anything anyone else will want to read, but if you think you want to, look me up on Twitter: Debra Dickinson @tbirealityck.

HERMIT
I’m going to stay home more so I can keep socializing. I know that sounds like a contradiction but I’ll recharge as much and as often as needed and then venture out when I’m able. I fear people will judge me as being anti-social but like the pics, I hope they look closer. I also fear I will be forgotten as I retreat more. I don’t want life to pass me by. The visits by my friends this morning gave me great hope that that won’t happen.

For now, I still have a voice. I’m still Debra.

Thanks for being here!



POST PUBLICATION UPDATE

I thought my wonderful readers might enjoy some pics posted by some of my friends I'm camping with. Here are the links:

"Winter is on the Horizon - Literally" by Robert Witham
"It Wasn't All Rain" by Alan Christensen
"On the Outskirts of Pahrump" by Alan Christensen

And the pic below was taken by Al and posted on his FB page on 10/16/16, the night of the Rare Hunter's Supermoon.


 

24 comments:

  1. Well written and painfully honest. This post brought tears to my eyes. Despite the near-overwhelming difficulty of dealing with the devastating effects of brain injury, you handle it with as much grace as anyone could possibly manage.

    Excellent lede as well. You have not lost your writing voice. Remember, writing (and publishing) can be excellent therapy. The shorter posts will make it easier for you to continue by removing so much of the stress of your previous workflow. I look forward to seeing how the new process works.

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    1. Thank you, Robert! This post was so up close and personal I am just now able to respond to the beautiful comments and support I received. Thank you.

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  2. Thank you for sharing your journey so openly and authentically. Yes, you are still Debra. And, we love you!

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  3. A distance of 2,064 miles separate us, yet I feel I can reach out and touch you. I met you at a camp area with a group of van dwellers this summer, yet I feel like you've been my friend most of my life. You are so willing to share yourself with others .... what a wonderful gift to us. I am a recluse and avoid group and social situations whenever possible. Mine has happened with age, no TBI, no dementia. You give me the will to work harder at overcoming my reluctance to venture out. Thank you for your sincerity, for sharing this difficult part of your life with us, for being you. You touch so many lives. I know you have had a huge impact on mine and I can never thank you enough. Hang in there girl ... you can do it! XOXO

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    1. I am just now able to come back to this post, Marcia, and I really needed your kind words - today, right now. I adore you. Thank you!!! Can't wait to see you and camp with you again - hopefully soon. Much love to you!!!

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  4. Thank you for your courage and determination. I'm inspired by your acceptance and willingness to face each day.

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    1. Thank you, Kate! I miss you my dear friend. Love & hugZ, d

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  5. Keep life simple. Thanks for opening up to us. Openess is hard for some of us. You keep on truckin' Debra!
    Danny.

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    1. Thank you, Danny. Was difficult enough for me that I'm just now getting back to answering comments on this post. KOKO (keep on keeping on) to you too. Thanks again!

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  6. Thank you for sharing your lifes ups & downs.... Although I don't suffer from TBI, on some days my age and fibro-fog seem to get the best of me.... It's always nice to know we're not alone.
    Lauri

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    1. We are never alone Lauri, and in case no one has told you yet today - allow me .... You are loved beyond measure dear one! Big hugZ, d

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  7. breathtaking views and I did not see the peak until the 3rd photo that you showed it to us. I agree we don't always SEE people, only what we think we see. I think short blogs is good and will be good for you. no need to keep up with what you said before. I have always just posted what pops in my head at any given moment. keep trying

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    1. Thank you for the understanding Sandra. Yes, to "keep trying" I think is the key. I love your blog!!

      Everyone - do yourself a favor and check out her photography, wit and charm at:
      http://snapperone.blogspot.com/

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  8. When we are boondocked near each other again, I will come see you and check on you,to make sure you are OK or to walk your sweet little Bentley, or to just say hi.....it will be good for me as an introvert to get out more!

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    1. Thank you, John. I always joke about our social gatherings being a bunch of introverts trying to be comfortable with mingling. LOL. I will take you up on that my friend. I'm housebound today. Big, big hugZ, d

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  9. Love you, my dear cousin. I know you do what you do with much effort. God bless you, Sandy

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    1. Thank you, Sandy. This means a lot to me. Some who are closest to me don't get it. I really appreciate that you do. I love you too, very much. xoxo

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  10. Thank you Debra, may the love and caring you share only return to you many times over.

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    1. Thank you, David. What a kind thing to say, especially since I feel like I receive a million times more than I am able to give. I'm working on it though. Love and blessings to you, d

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  11. My heart goes out to you my dear cousin, but know this....God watches out for his children. He will put people in your path that will be a help to you in all walks that are needed. I sure do wish you could make it here to see us again. That was so much fun going to Western Sizzlin with all the family (that was here anyway). Sorry to hear about Bentley and his troubles. You take care of yourself sweetheart. Love ya Gloria

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    1. God is within as without, and we are One. My connection with spiritual energy keeps expanding in awareness dear cousin and for that I am truly greatFULL. In that, all is well, always - no matter what. I'm with you - another Arkansas trip needs to happen. I need my hug from all Y'ANS! :)))) I love you!

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  12. The photos are lovely! Thank you for your openness and sharing about your situation. There are many who struggle out there, just remember you are not alone.

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    1. Thank you Anon! You are right, and I know my challenges are nothing compared to many. I believe we are all One and therefore never alone. Thanks for the encouragement. Love and blessings, d

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