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.
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.
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.
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.