I hope to catch up on my blog soon. Thank you for your patience. This post is about my 2nd week of my "Texas Tour."
What does one do when you have a brain injury and can’t drive in traffic but need to get from Denton to the other side of Dallas? You go around, of course. WAY around (pic above).
After a long, difficult week in Denton, Colvin provided some much needed relief in the form of a wonderful campsite at Cedar Hill State Park. The furbabies and I enjoyed it immensely. Thank you Zippy!
The following are pics with friends and family throughout the week – lots of love and joy.
Keli manages the Animal Hospital & Clinic of Arlington where I volunteered in 2013. We’ve been friends ever since. Love you Keli!
Steve and I have been friends for 35 years.
And Sharon and I have been friends since high school.
I also got to see two other high school friends while staying at CHSP – Randy Frazier and Mary Ann Milner. But duh me – forgot to get pics. Next time guys!
My nephew and his wife came to my campsite one night. They brought pizza and built one of Bubba's famous fires. Awesome!
My sister Sheree camped with me Friday night. We stayed up late talking – as usual. Such fun!
Earlier that evening we went to a house concert presented by The PosiLounge. It was an extreme privilege to hear Jana Stanfield perform in such an intimate setting. Thank you for continuing this wonderful venue Dennis Persons. I first heard Jana in concert at Unity of Dallas in 1998 with my friend Robin Baker. What a wonderful experience – both concerts!
Lunch with my sister Shirley, Sheree and Mother.
What fun it was to spend time with Sheree's family!
After spending time with Sheree and family, I got to see Charlene, my niece, and her family. Nonni & Bentley loved playing in the backyard with their two dogs. Thanks guys! We love you!
After taking the kids to school, Scott helped me check the fluids in my van, and then went with me to Auto Zone and Wally World to get groceries and supplies. After that I headed south to Austin feeling rested, secure about my van, and fully stocked with food and water – a wonderful wrap-up to a wonderful week. Thank you, Scott!
TBI HS Symptoms
I would be remiss if I did not write about the symptoms I had during all of this. After all, this blog is about vandwelling while coping with a TBI. I am going to try this format out for awhile: I will write about events and vandwelling, appending any TBI info at the end. That allows my wonderful readers the option of skipping this part if preferred.
I had several symptomatic episodes during the week. For example, I wore my earplugs during the Jana Stanfield concert but was still only able to stay for half of it. I get nose bleeds and/or debilitating vertigo with too much noise. Sheree held my hand all the way to the car when we left. Without her help I would have just wondered around or stood staring until the ‘whirring’ in my head subsided. I never know how long it will take and in the meantime I’m like that old cliché, “the lights are on but nobody’s home.” Later, Sheree told me that before the concert started I repeatedly kept asking everyone their names. It was people I should have known. I don’t remember doing that. The brain has always fascinated me. Mine is an enigma and sometimes a stranger.
While at lunch with mother and Shirley, I was having a really hard time. Part of my HS issues sometimes involves my thermal regulation system not working. During this trip my doctor gave me a great explanation as to why it happens, and I was excited to finally understand, but now I don’t remember what he said. I can at least tell you what happens when it goes haywire....
If I get too cold, it can end up feeling like hypothermia has set in. That happened one time this winter and I was shivering so badly my teeth were chattering. I bit my tongue and cheek so hard they bled. At the time I was wrapped in several blankets and sitting directly in front of a stove. Weird!
Likewise, if I get too hot, I take immediate steps to cool down because I have a very small span of time before I pass out. There is no warning, no rhyme or reason as to why it happens, and it comes on within seconds. I can be in a perfectly cool room with a/c blasting and still overheat. For the record, it’s not hot flashes – not even hot flashes on steroids. It’s much worse than that. It feels like my body has reached a flashpoint that’s about to lead to spontaneous combustion. If I didn’t know better I would think that my blood was boiling. I realize how dramatic that sounds, but it is what it is.
It happened at the restaurant during lunch with my mother and two sisters. Sheree hurried to wet down one of the cloth napkins for me, and then wrapped it around my shoulders. I was struggling to not keel over right there in my chair. Unable to walk, all I could do was sit there and fan myself with the menu and work on controlling my breathing. The manager came over. I was embarrassed to be causing such a ruckus, but he ended up cranking the a/c down real low for a little while. That helped immensely and soon the crisis was over – only for Sheree to look at me later and hand me another napkin. This time I was having a nose bleed. Soon after that happened we headed for the car, and instead of getting to visit some more we took mother and Shirley home.
We decided it was best for me to stay at Sheree’s that night so after a long rest I followed her to her house. My van fit perfectly in her driveway and once we got there I took another nap. As you can see in the pics above, my nieces and nephews came by later to see me. What a special treat! It was really good to see everyone, but I hardly left the couch and was not as present as I would have liked to be. By that, I mean I don’t remember much. I hope it doesn’t offend my family to know that I actually don’t remember most of the evening. Right now, while writing this, I can't even remember all their names. Things like that make me very sad. We got some great pics though!
I ended up calling it an early night and slept for 12 hours.
The next day several of us met for breakfast. It was a small, local diner or I would not have risked it. I still had to wear earplugs though. That means that once again I didn’t get to visit as much as I would have liked to, but once again we got some great pics! Love you ALL! Thank you for such a wonderful time and for looking out for me with such great care.
After breakfast, I took a nap and then headed to Charlene’s. With Siri’s help, I took back roads. I got a little lost so it took longer than expected, but there was NO traffic so that was awesome.
Wesley gave up his bedroom for the night (Thank you, Wes!), and after a spa shower and a relaxing visit, I slept like a baby. The extended R&R was much needed. I felt much better by Monday morning.
I mentioned above that Scott helped me with my van and got me to the store. The truth is, I didn’t have it in me to do all that running around by myself. It would have depleted what reserves I had built up. Usually though, before heading out, I have ingrained the habit of always checking the fluid levels and tires (thanks to Colvin), but this time I would not have been able to do all that. I could not remember how, and even after looking at the notes I had made with complete instructions, I was still confused. Thanks again for all your help, Scott.
I realize that some might think this lifestyle is unsafe for me, especially when it comes to the driving. Around that issue, I sometimes feel like an elderly person whose loved ones wants them to hang up the keys. There may come a day when I have to do that, but it is not today. For now, vandwelling is the only way I have of living independently. It is far better for me than any other scenario, especially assisted living or being dependent on others day-to-day. I hope you saw the positive aspects of my life as you read about my symptoms. Life is good. There is always, always, always something to be grateful for.
The Rest of the Story
What I learned this week is that unfortunately, in the future, I need to micromanage socializing being very particular to plan ahead of time and stay in quiet environments while visiting with only 1 or 2 people at a time. It worked best for me when people came to my campsite, but I know that’s not always possible. It may come to that though. For me to see loved ones, they may have to come to me, wherever I am. We shall see.
I also learned that I cannot compromise on peace, quiet and rest – plenty of rest. If I compromise on those factors, or push the envelope too hard for too long, I have episodes every time.
I am writing this post after having left Texas over a month ago. I have enjoyed several weeks of quiet rest, and it amazes me that it took me all this time to write this post. I had to retrain my brain on how to write. I was concerned that I had lost the ability, but I seem to be doing better with it now. I am just very, very s-l-o-w.
Obviously, the remote locations vandwelling affords are healing for me. It seems my world is getting smaller and smaller in what I can do and can’t do in the realms of “norm” but I am so blessed to have the opportunity and ability to live in a way that not only meets my needs but also allows me such great freedom. As I have mentioned before, assisted or dependent living would kill me.
I am very, very grateful to live in this day and age of modern technology. I text my tribe every few days &/or every time I change locations. Plus I have Colvin to travel with, but if I didn’t, I have many vandweller friends that would welcome me in their camp. I am blessed to have so many wonderful people in my life – traditional and nomadic. I truly do not take for granted a single person in my life that has made it through all of this with me.
To do the things I do takes daily, minute-to-minute, and second-by-second concentration. There is nothing I get to do by rote anymore. For example, I do a lot of counting. When I put things outside, I have to keep a running count: footstool, dog water bowl, patio mat and stake = 4. If I take the water bowl inside, the outside count becomes 3, etc., and I can’t be interrupted until I get the new count straight in my head. It gets complicated and frustrating – for me, and I’m sure, anyone around me.
Likewise, when I get ready for the day there are 9 steps. After that, there are 7 steps to my morning routine – breakfast, feeding the dogs, etc. If I get interrupted and lose count, it takes me quite awhile to reconnect with where I left off. In whatever I am counting, if I don’t get to complete the sequence for whatever reason, it is distracting enough for me that it takes extreme focus to keep me from being immobilized. More and more, I also am noticing that I tend to be mute during times of distraction and confusion. If that happens too often in a day, I am in danger of a seizure. Sometimes I wonder if unrelenting routines will become my whole world – much like Dustin Hoffman in Rain Man.
To be honest, when I have episodes, I get scared sometimes because I never really know how bad it’s going to be or how long it’s going to last or even if the symptoms will ever end. But they always do. For that, I am very grateful, and blessed.
I don't know why I can do some things well, and then turn right around and can't do other things at all. Sometimes I can wait and figure it out, sometimes not so much. I have good days and bad days, and sometimes I can pinpoint the reasons why, but often I can't. Sometimes I forget things I did 5 minutes ago, 5 days ago, 5 years ago, and then turn right around and have stellar recall that astonishes even me. I don't get it. I certainly don't expect others too. It is great practice for living in the moment.
Oprah once said, "Surround yourself only with people that lift you higher." I also have to make sure that the people in my life are willing to allow me to just be - however that appears at the time. I have no room for people that judge me, question me or try to change me. I'm hard enough on myself and am growing more and more confused by my symptoms. I am doing the best I can and for those who don't get that, or can't accept that .... Well, it seems my world is getting smaller and smaller in that respect too. I am learning to be okay with that. Otherwise, I stay in a constant state of grief.
I know and meet people all the time that focus on what is wrong in their lives, especially if they have a medical condition. I may forget my commitment of staying positive from time-to-time, and visit a funk zone fleetingly, but I refuse to stay there. I believe we have to be willing to focus on what is right, what feels good, and bask in love and joy as much as possible. It is crucial to mental, physical and spiritual health. In that, synchronicity flows. From that, anything is possible. I believe. I hope you do too. KOKO!