I put a video on YouTube today as part of my Friday series, “My Life As A Vandweller.” It is titled, “Why I Am Grateful to be A Vandweller” and you can click below to watch.
Before you watch it, however, I feel the need to share that it is not your normal upbeat video you are used to from me. I had a friend shoot a clip of me in the throngs of being symptomatic from a seizure. I thought long and hard about whether or not to share this video publicly, but the truth is that the only reason I would hide it is because I was afraid of you, my viewers, and my blog readers; the public in general.
I’ve said it before and it’s worth repeating (at least to myself), I will not make decisions based on fear. I feel the fear, and gather information, and then hopefully make an educated decision, but I will not let fear as a standalone factor be my decision maker. I cannot.
So, here it is. I hope you are not too shocked.
Before becoming a vandweller, I tried all that I could to remain independent. I even tried living with my ex as a roommate! Now that should tell you something. It was an unmitigated disaster, AND I am grateful to him for the offer. I also stayed with my sister for awhile and I even tent camped – in August and September – in Texas. The heat and humidity were unbearable but since I was no longer able to work and could not afford housing, I was desperate. I will share more later and offer it here on my website as a tab called, “My Story” but the bottom line is – even though a few offered to let me stay with them for awhile (which meant it was only temporary), I can’t stay in homes where there is a lot of noise. My seizures were getting out of control.
I had always planned on living this life – just not this way. When I was still working, I bought a vintage Class B and was in the process of remodeling her when I was told that my life as I had known it had probably come to an end. Wow, talk about dreams going up in smoke, quite literally since Fiona (my name for that rig) had an electrical fire right around that same time. But I wasn’t ready to believe my doctors yet so I moved in to a trailer some friends bought for me to live in. I am so blessed!
That worked until I flooded it, and about that same time I could also no longer work even a part-time job from home. So, it was a slow decline for me to end up tent camping until my disability status was approved. Now I’m getting to where it is difficult for me to be around people. Period. I have to be very careful and limit the stimulus in my environment. Fortunately, that is possible out here. Unfortunately, my world is getting smaller and smaller and I worry that people will not understand. I also sometimes miss not being able to be more social. Sometimes.
I have a disability. And I have to accept that. You’d think I’d be in to acceptance around it by now, but I’m not. I’m getting there though.
Leave it to me to be in the middle of the desert and forests and find a way to do too much and trigger seizures like the one I had the day before Thanksgiving. I can’t help but wonder....
What does life have waiting for me if I learn to live within my limits? What could be waiting for each of us if we learn to live in the flow and not worry? Just be.
I have come to accept that I cannot stay out here on my own, and fortunately I do not have to. I am blessed with so many wonderful people in my life. My gratitude video is ultimately about them, and about this way of life that affords me healing – when I live it day by day, staying in each moment.
I don’t get to do things by rote anymore. Even to walk across the wash to my friends’ trailer (where I had a fabulous Thanksgiving dinner, thank you very much Robert), I have to think about it. I have to pretend I’m OCD and check and double-check the locks, and hopefully remember my keys, and wear the right shoes for the weather. I have to remember where it is safest to cross the wash so I don’t fall – every single time. Even to make myself a cup of coffee before I go on a walk, I have to think about the 7 steps of drip-brewing a cup – each one of them for every cup. I’ve already scalded my hand once because I tried to rush the steps (and the thinking) and forgot that I’m not supposed to hold the cup while pouring the water. Yes, that is one of the steps I have to think through. So, if I’m symptomatic, I sometimes have to forego luxuries like having a cup of coffee or taking a walk or visiting friends.
AND my worst day out here is better than the best day I could have in assisted living somewhere.
That bears repeating, my worst day out here is better than the best day I could have in assisted living somewhere.
So what if I don’t get coffee, or get to go see my friends, or even take my besties, Nonni & Bentley, for a walk? It can make me sad and put me in to a tailspin if I let it, OR I can look at the good, the independence, the fact that this too shall pass, and wait it out. I can learn from it and build an even better life the next day. My disability doesn’t have to be debilitating. I suspect that is true for many with disabilities. I hope it is. It’s why the ADA was formed, right? We deserve the chance to be accepted just as we are because we can still build good lives for ourselves. Now if I can just do the same for myself, and move into acceptance. It is what it is. And it’s all good. Did I mention that I’m working on it?
Most people never see me when I’m symptomatic so they tell me I don’t look like I have a disability. Yeah, I know. For the most part it is what is known as an invisible disability. Others that have seen me symptomatic tell me that I shouldn’t be out here as a fulltime vandweller. But what they don’t know is that if I go to assisted living, I will die. I just know it. It is that simple, and complicated. It would kill me. Within those walls my disability would still exist anyway, right?
So this Thanksgiving, actually every day, my gratitude is for the people in my life that have loved me and have made it possible for me to remain independent. There are many, and more continue to show up every day. I shared many of their pics in the video and I’m posting those pics below as well. I know I will forget some. If you are not listed and should be, please forgive me. These are peeps I don’t have a pic with (yet)...
Cynde, Regina, Roger, John, Judy, Marcia, Maxine, Mike, Michael, Cheri, Cyndi, Carolyn, Johnny, Yolanda & Scott, Sheila & Frank, the Witham clan, Brenda, Al, Lavonne, Linda, Katie, Susan, VeeJay, Cindy, Sharon, Marty, DSHS 76, Linda & Sara, Jennifer, Onna & Neon, Raymundo, Brycee, Michael, Maria, Td, Nico & Jacob, Karen, Kylie, Heather & Dave, my Unity family, Lars, Karyn & Tim, Coletta, Sherry, Robin, Roby & Suzy, Don, Dan & Doria, Linda, Bettie, Darlene & David, Judy & Billy ....
And the list could go on infinitum. You and the people in the pics below, and I’m sure many that I have forgotten, are my earth angels. Your bright lights lift me up every single day even when we’re out of touch for long periods of time. At the risk of sounding corny (and it’s probably WAY too late for that, lol), and to borrow an old song from Debby Boone, “You Light Up My Life.”
That’s why, even in the throngs of a seizure this holiday, I remain forever grateful. It’s a good life out here. See you down the road.
|Fellow Nomad, Robert|
|Scrapmaniacs - BFFs Cathy, Carolyn, Bobbie, Linda and Sara|
Rev. David H. Howard
Blog, "In Touch with Reality"
|Fellow Nomad, Bob|
Cheap RV Living.com
|Fellow Nomad, Glenn|
|My Family at Mother's 90th Birthday Party|
|My niece, Samariah|
|My Stepfather, John Whittington|
the best man I've ever known
12/24/28 - 9/16/11
|Cousin Gloria and her family|
Representing the "Arkansas Clan"
|The Baur Family|
|Family from my Father's side,|
the Dickinsons, descendants of the Mayflower
l to r: Jane, Judy, Bob, me, EllaFaye
|Fellow Nomad and BFF, Suanne|
|Fellow Nomads, Brian and Cindy|
|BFF and Guardian to Nonni & Bentley, Keli|
|Bentley and Nonni|