A Glitch Walk Into A Wall, To A Relaxing Kayak Ride With My Hubby
- Marissa DeVaul Parmer
- 2 days ago
- 4 min read
Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.
Living with a Glitch means learning to listen to those warnings,
even when I do not want to. YES, my stubborn Aries tries to listen....
Some days I shake it off and keep going. Other days, I know better. I can feel that a Glitch day is here, and I have to decide how much I trust my "off" feeling.
Lately, the weather has not helped. Extreme heat in the high 90's with Heat indexes up to 115. Then these crazy late day/evening storms, strong winds, loud thuunderand intense lightning strikes lighting up the entire house!
Both can be triggers for me
Is this a GLITCH aura or I am I just feeling "off"?
The hardest part about feeling “off” is how easy I can ignore it. No simple way to say, It can feel like a fog, tingling on my head, strange tiredness, is it just my BP being low or is just that darn menopause crap again. A sense that my brain and body are not fully lined up. Am I overthinking this? This is at times A BIG problem for me, is when I do overthink, and then it makes things worse. That is the part many people do not see.
Before a Glitch day becomes obvious, there is often a private negotiation happening inside between my brain and my body........If it's a Glitch Day well then I lost and it won the day.
Sometimes I guess right. Sometimes I do not. Others I just need to listen to my husband, cause usually he ca tell. Now don't telll him that:)
The other day it looked like I had walked straight into a glass wall. I am not joking it looked like a true invisible wall. I ended up on the floor without knowing what happened or how I got there. After Brent got me up off the floor, and safely back and laying on the couch, and knew I wa sok, he pulled up our cameras. He busted up laughing, now those that live with a Glitch this is by FAR NOT a luging matter but you have to learn to laugh.
Just watch the video for yourself for a good laugh.(yes, allow yourself to laugh) I gave him a hard time and said, I knew you wanted to not doing anything today, thats Twhy hyou put that wall there. :) Link to video below
Now don't take me wrong, after the laighing is done, I trily do not feel well and feel the guilt settle in cause we did have plans that day to head to the beach for riding in a kiyak together. We have been thinking about getting one, and it was early enough in the day, so it was not too hot and beautiful out. But instead, I am on the couch and fall asleep without even knowing it. That kind of moment stays with you.
A Day on the Beach in A Kayayk
I took that day to pretty sleep on and off all day, while watching sports. Brent of course taking care of me, and making I listen and don't push. So TODAY we could go on that Kayak ride!
That day we went to the gym first to get a workout in, and then headed to the beach. We tested ourselves a little. We paddled against the boat waves, seeing how fast and strong we could be.(Actually I was just trying to prove to him I was ok & I was stronger than he was LOL) There was effort in it, but there was laughter too, pretty much teasing who was stronger. A little bit of a challenge. A little proof to myself that my body could still do something steady after a day or 2 of MyGlitch.
We stopped a few times, just to sit there in the kayak and looked around. No rush. No big plan. Just beach in the salt water, sky, sun, moving clouds, and peace beside the person I love. Ok, and maybe cause we neededto rest our arms too....
Small moments matter because they are small enough to hold.
Link to kayak video below
Yes Glitch Days SUCK, BUT EMBRACE the GREAT Days Too!
One moment I am recovering from a fall I do not fully understand. Another moment, I am at the beach with my husband, sitting in a kayak.
A Glitch day can feel huge when it is happening. It can take over the room. It can make everything feel uncertain.
I am still learning to not to measure my life only by the hard days. I need to listen to my body, especially when the heat is high or storms are coming. I need to take the “off” feeling seriously, even when part of me wants to pretend it is nothing. You may say, well you have lived with this(our family) for MNANY years, don't you know better by now. That is something I do get upset when people say things like that, because they have not lived our lives and truly have no idea. But no matter how long you live with your own Glitch, it is ever changing and so are you. But the small things push back in their own quiet way.
A kayak on the water. A laugh with my husband. A few minutes of silence enjoying the sun. The sense that even after a Glitch filled day, walking into a invisilble wall, there can still be a good one close by.
That is what I keep learning between the heat and the storms.
The difficult moments are part of our life,
but they are not the whole story.
The small moments do not erase the Glitch.
They help me live even MORE for that ONE moment!
‘But no matter how long you live with your own Glitch, it is ever changing and so are you. But the small things push back in their own quiet way.’ Amen!
My Glitch just happens to be debilitating panic attacks, but life still moves. i can still walk on the beach, watch my favorite teams (Bueckers, Miles, Mitchell, Clark…always put on a show), cheer for MV-Pete(!), listen to and care for my (now grown) boys, laugh at John’s deadpan humor, and snuggle with Oakley & Nora. Life may have become smaller, a bit more slow, but it’s lovely all the same.
Your view from the kayak was breathtaking.💜 Love you, your quiet courage, and the way you move in the…