“I believe you.”
“Oh, without a doubt!”
“There is a type of trauma that comes with being a chronically ill patient.”
“I don’t know.”
These have been three of some of the validating and kindest words spoken to me by doctor’s.
“I need Christal time.”
“I love you.”
“Do you need anything?”
“Where are you, I’m freaking out! I need to talk to you.”
These are some of most important words said to me.
Write these down, Christal.
I remember being a twelve or thirteen year old girl living at the abandoned Jersey shore during is wild, barren, wind-blown months of winter, it’s off-season; you know, when I was sure I was about to absolutely die out here. My new friend J. My sister M. and I would crawl out the bedroom window in our pajamas, walk ten blocks to the little gas station that was closed but had a Coke machine, get a bottle and lay in the middle of Landis Avenue in Sea Isle until a car came.
Mostly one never came.
Mostly we talked and made each other laugh. Mostly we thought about hopes.
I remember think “How the Hell am I going to ever deal with the constant sand in everything, even my scalp, and how come they aren’t freaked out by it?”
I also remember thinking I would “come home” eventually. The scoured driftwood like bones on the beach, the wet shoes, the drizzling Thanksgivings. I was able to walk freely about without running into gangs of creepy brightly dressed popular loud mean stupid kids who thought a book was only a school prop. They were still around, but mostly just in the summer and I knew how to duck and dodge. Mostly.
It took a long time to “come home” and I didn’t really recognize it when I got here. I just put my bags down and said “Oh, ok.” and now I’m moving in and making it mine until whenever.
I wish I had this when my children were small. I assume this is why we always seem to make better grandparents than parents? We are so bold and yet so timid as parents. So terrified, charged with the ultimate responsibility of guarding the psyche, soul, body, and heart of a person born perfect in heart. Meanwhile inside, my brain was going “Holy shit, God, what an honor.” and to myself I’m screaming “YOU’RE GONNA FUCK UP! YOU’RE FUCKING UP!” so I fucked up over and over. I made decisions based on fear, based on ignorance that caused fear, isolation which caused ignorance which caused fear… The “Don’t talk, don’t tell.” un-spoken/spoken rule.
Knowing this today can’t unwind the knot of yesterday. It gives me the answers but it doesn’t salvage it for others. Regardless of how I became placed in this situation and the continuation of it repeated as an undiagnosed sick adult, the depth of gravity on kids is inevitable. With all the best intentions, all the pretty plaques and Celtic lullaby’s sang into the sea winds won’t change that fact. Churches won’t scrub societies red A from your chest, they’ll actually brand it deeper and remove the tape only to staple your mouth if you don’t follow the transcript or ask questions to deeply. Then they will bury you to your neck in guilt for the horrific example of parenting you give your children when the poverty of daring to leave a males care or bond (church leader or husband) even if they themselves are in the same throws.
These are false. They harm and tear. They destroy families intimately, right to the very core of their being.
We can’t remove what’s gone but we can tell our stories, each person, as ways to learn from each other. We can be willing to be willing. I can’t make someone accept it or hear me, no matter how many ways or times I offer it. I can, however, be willing. I’ve been there a long time. So I’m home.
I’ll keep fresh bread and teas in case they come home. I’m home.
Bleeding colitis hurts like a son of a bitch. This is in the ten range.
Four days in the hospital with five more on two antibiotics; two weeks later, I’m still really working on recovering. This bounce back is a struggle and surprising the Hell out of me. It took a week for me to get brave enough to try semi solid foods and, yeah, I’m glad I waited a week.
Good things came from this, as always. A hyperplasia (some kind of something growth) was noted on my adrenals. Validation after all these years of my saying Cushing’s by steroids doesn’t explain my symptoms. I asked multiple times for scans specifically of adrenals and pituitary (we’re in there all the time, why not?) I was told, literally, it wasn’t necessary, labs results said no, and once after saying both these, he backtracked and wanted to send me to the Mayo Clinic. Because I asked for a pituitary scan. The question is; three rare things, TSC, Cushing’s, hives? I was told no recorded cases of Cushing’s with TSC. No adrenal tumors. Not only not true, but I’m standing right here. This could be important for some baby being born with adrenal insufficiency or undiagnosed Cushing’s with TSC.
This isn’t just about me. It never has been all about me but I can only talk in the I. I can’t talk another story. I’ll get it wrong. The times I’ve tried have been a disaster.
On this very auspicious Thanksgiving day I want to thank my children for their kindness, forbearance, quick-witted humor, unique intelligence, ability to make wonderful any occasion and the many, many, many beautiful, warm and happy memories I rifle through at odd moments of any given day. You are the more treasured than seashells, sticks, sand, and rocks in a crystal and silver bowl.