Last week I jotted down some thoughts LIFE’s NOTES, the aftermath of that day and post has lingered.
I have concluded that while many around the world are trying to achieve the new year ( decade) new me status, I am over here wanting to turn back time, past years, ( decades) old me status.
This curse of my failing health has had one benefit, time, time in my head, with myself, away from the million thoughts and actions.
I want to believe all this was the reset button I needed, I know there is no “cure” in sight for the physical struggles, but I want to regain some control, in fact all of this started back in December.
I grew my hair out, it started off as wanting a change, I was under the care of new doctors at the time and hopeful for remission.
I believe it quickly then became a way of “hiding” from the world, not to go all Dr Phil on you, but essentially I literally wanted to hide my face from the world and myself, once I realized there was no remission in sight.
My olive skin had/has become pale, acne has settled in as if I am a 13 year old girl, not to mention the unexplained fire red cheeks I’ve endured flare ups of for 5 plus years, rocked the very phenomenon last week as I wrote up my post.
I also had/have what they call moon face, I’ve learned all my “weird” symptoms have names, and this one is better then saying my face is fat, swollen, looks like a balloon.
The hair gave me a mask, it gave me a drastic change that I could focus on and hopefully blend into my new uninvited look.
I kept it long for 4 years, the girl who once despised long hair on her, was protective of the long locks, even though it came out in clumps daily, I protected every strand left on my head with my life.
It took years for the hair that offered me a shield to turn on me,to be the sword not the shield in my life, but slowly the blade of that sword reminded me that this hair was hiding more than the undesired look that was now me, it had swallowed me up, I had completely disappeared behind my hair.
I remember seeing photos from a family gathering, one that I showed up to for a very short while, not to be rude, in the photos I am 100% not me, I had a flare up while there so my face was full on red rash, my moon face was front and center, and my choice in outfit that “fit” was horrible.
The conclusion to this story is I chopped all my hair off, I did not go boy cut short but a good 10 inches was cut away, leaving me feeling a little bit more like myself.
All the stylists at the salon kept commenting, wow your taking it all off eh, and how it was really really long compared to the boy cut I use to go in monthly to get cut.
After giving me a 90’s Meg Ryan messy bob cut my hair dresser kept saying wow SASSY, she could not know how much I needed to hear those words.
Not sexy, cute, gorgeous, beautiful or any other word used to compliment a woman, but SASSY, aka fun, unique, daring.
While I can not go back in a time machine, it’s not really the 90’s, I’m not one of those moms stuck there either, but Meg’s cut was always the cut I envisioned myself having if I ever grew it out ( my thoughts then), and I am loving my SASSY cut a month later.
Where does the road take me now, in this never ending search for the past me, I don’t know.
We are taking our youngest to his first concert next week, it’s mom’s first in many years, I’d have to dig up my concert tickets but I believe my last show was a decade ago, Rob Thomas, I had broken my foot and had to attend with an air cast on.
Go ahead and laugh now I promise the vision of me walking with a right leg prosthetic and left foot air cast was a “sad” sight, I rocked my bright pink dress with that baby though, oh did I mention that if I am not wearing black, bright neon colours are my thing?
The one before that was a Matchbox 20 show were I spent most of the time running for the bathroom, the start of what I now know as IBS.
My hair and this concert are probably the closest I have felt to the girl lost in life’s shuffle for so many years that I’ve lost count.
Matchbox Twenty is touring this summer and my poor Hubz didn’t get the reaction from me he had assumed, it is hard when even those closest to me can not decipher what it is I am going through.
The news excited me for all of 2 seconds, then the fear set in
What if I get a flare up, what if it is like my last MB20 show, and I am running for the bathroom more than I am in front of the stage.
What if I am too swollen and nothing fits right, I can’t attend in my pajamas!
What if I am so exhausted I have to sit the entire time, I attended one show in my wheel chair and it was soul shattering. If I lived my life confined to a chair I would have time to get use to it, these days were I am forced into mine is like a prison sentence.
What if the tickets are out of out budget, hubz will say it’s not lets go, but I worry because not all “medical” has been covered for me, hope comes with an out of pocket cost when you have an “invisible” illness.
What if the anxiety of traveling on a highway to get there is too much for me
Not to mention I will be missing this guy….
This is Jason Browning, I met him 20 years ago at a MB20 show, at the time he was head of security, he went on to help manage Rob and MB20 tours, all the while still being upfront at the shows keeping a watchful eye on his good friends, the band and us fans.
I can not count the times he came out to the floor to chat with me and my concert buddies before, after, and during a show, if one of “us” were missing he knew it and would ask the others why we weren’t there.
Above was a show were the band was late, they had to rush through sound check,my hair was such a mess it was so hot out, but he saw me and a few friends and he came out to the grounds before the show to chat, this is one of many photos I had of he and I, lost when a pipe burst in our storage room many years ago.
We even chatted online during his time off and via the tour bus, only those very close to me ever knew this as I respected his privacy and didn’t feel I should shout it from the mountain tops, another thing I never did was ask to meet the band, I don’t deserve a medal but want to share it because doing so is part of who I am.
This reminds me of the time he was going to bring me and a friend back to meet the band but rob was too sick, this man came out to find me and my friend and he stayed with us for quite a time, just shooting the shit, and horsing around.
Once he personally brought me a guitar pic and placed it in my hand when hubz failed to catch several thrown our way.
Jason passed 2 years ago in December, he was 46, forty six! I am only a couple years from that age, life is so fragile, thinking of him and not seeing his presence at the show undoubtedly will effect me, I just know it, I hate that my health has kept me from seeing him for ten years and now it is too late.
The past decade has tried to define me, I have fought back against the universes portrayal of me, even when I started this blog I set out not the be THE SICK GIRL, rather an escape to be ME.
I am left in this suspended animation of sorts, I am afraid to move forward and refuse to let go of the past. I don’t want to be the one they dub stepping off the 80’s bus, I have no desire to be stuck in the past, yet a decade or two ago is the last time I remember existing.
Last year I wrote about a mid life crisis SLOW DANCING WITH A MID LIFE CRISIS, I didn’t know then as I don’t know now what it is I am trying to process.
I do know that eventually the hope will fade and I will be left with what?
I want to be a amputee warrior, a mental health Allie , an auto immune companion, but I do not want to be all of it, I do not want to only be any of it, I will take my last breath fighting back against being anything but ME.
I know it is a fight I will never “win” not in the sense of ever eradicating the sick girl part of me so I am left in this argument with myself as to what I am willing to accept as defining me.
To say I am unique would be: kind, complex- fair, but to say I am an intricate manifestation of all that is one’s challenging life would be nailing it on the head.
What does that mean, I feel it, I wrote it, but what does in mean, WHO AM I REALLY?