Living As All of Me

[HannahOne]

Thank you TheBibBlue, SanMagic7, NarcKiddo, Chart.  This is so hard and also I feel so supported.

NarcKiddo, I hate my plans being scuppered! This made me smile. I was able to do therapy virtually which is good. Came home and slept. Kids home but---each is now making their own snack. I am listening to "tink tink" and "click clack" from the kitchen. A peaceful sound. They know how to cook, there's plenty of food in the house, yummy things I didn't have access to. They know what Tzatziki is. The house is a bit of a mess but it's fine. Frank reclines amidst the recycling to go out tonight. I see he has tasted several of the cracker boxes.

TheBigBlue I had to laugh because you'r right, wolves do better! They keep the young wolf within the pack and share the kill.

Chart, What you wrote "Isolation is indistinguishable from abandonment to a child. And abandonment is death." really hit home for me. I am lying in bed after therapy and my teeth are chattering. I think it's a relaxation of long held tension against speaking. I am speaking in a new way from a new part of me. I am undoing isolation.

I have been listening to a song, maybe it's silly. It's a love song, but I'm singing it to me. Madison Malone singing Aerosmith. I was stunned just now when I looked it up to post. I had never seen the video. She is singing not to a lover but to her child. And that's how I was hearing it. To my younger self. https://www.youtube.com/watch?v=L1299NPXPeM

I feel bleary and depleted. But not horrible. Just weakened. I can't tolerate feeling weak---I couldn't tolerate it, I always pushed through. I am tolerating it. Sinking into my flannel sheets. Listening to the kids keeping normal life going, as a child would listen to parents sleepily through the door. I am certain not one recycle box will go out, I am not deluded But they are making their own snack and that's enough, that's fine, they are settling in after school to their routine, they are peaceful, settling into their homework, the couch, resting too. They know how to rest. I am learning.

[sanmagic7]

hannah1, congrats to you for allowing yourself to feel weak, for learning how to rest.  2 things so many of us weren't taught, didn't learn, weren't allowed.  shame, guilt, humiliation - so much bad was heaped upon us    for not being strong all the time.  those are bricks of expectation to always do, do, do.  i'm so glad to hear you were able to sing a love song to your little hannah.  it brought the sweetest picture to my mind.   

and very glad your family can take care of themselves for this bit - that's the best!  keep taking care of you, ok?  you deserve it.  love and hugs

[HannahOne]

Thank you, SanMagic. I'm getting lots of practice LOL. Still sick.

When I get overwhelmed with caretaking I just go to my room and rest. No one seems to mind, they carry on their activities.

I feel so vulnerable when sick. I imagine Mr. Frank must feel that way too. He hides his illness. You can only tell because he doesn't flop stretched out when he's sick, he sits only in a "loaf" with his feet tucked under him and you can see a little tension in his cheeks. So maybe it's just a mammalian nervous system to feel scared that I'm not 100%.

[HannahOne]

Working on grief.

A year ago I unintentionally revealed a trauma to my therapist, somehow I thought she knew, and so I said something rather awful, with zero preparation. she was a little shocked although she tried not to show it. I was really upset. I was upset that I hadn't known what she knew, that I had been a bearer of bad news. I felt that I had hurt or betrayed her.

Of course, she is not my mother.

I brought her a few flowers in a little glass as an apology. She took it. The glass has remained in her office.

"Grief is only love that has no place to go."

Age 5, showing my dad a drawing. He doesn't look. A little glass in hand. A secret. "It would kill your mother." I won't tell.

"Grief is only love that has nowhere to go."

What to do when you can't use words? I spent the next day bicycling my tricycle a few doors down to a vacant lot. Picked flowers, dandelions, thistle, Queen Anne's lace, filled my basket, tricycled them back home. Piled them on the driveway. How many trips? The pile of flowers, erm, weeds, was as tall as my head as I recall. The flowers filled two trash bags. I know because when I called my mother out to see my "surprise," she stuffed them into trash bags immediately.

Grief is only love that has nowhere to go.

This week I realized that little glass is a shot glass.

This week I realized I didn't need to bring my therapist flowers. She's not betrayed that I know what I know, not hurt that I feel what I feel.

Still don't know what to do with the two trash bags of love. Or the empty glass.

https://www.youtube.com/watch?v=0n952KsQg6M

[Marcine]

HannahOne, a reflection of your words, offered with respect:

A shot glass.
Keep the poisoned secret.
Secrets.
Tricycle.
Little you.
Piles of picked flowers in the driveway.
No surprise, they got stuffed right into garbage bags.
Not your fault.
Never was.
Truth.
Grief.

[NarcKiddo]

Still don't know what to do with the two trash bags of love.

I have no words.

 

[TheBigBlue]

 

[sanmagic7]

hannah1, i don't know of much more awful than having a gift of love from a child trashed. as said above, no words. the idea of burdening a child w/ a secret between parents is also awful - i've had that experience, and i caved in 3 days.  thought i was doing the right thing by being honest, turns out i got punished. i still don't know how to hold secrets that can be hurtful, that are full of poison, as marcine said.  those kinds of experiences can break a child, cause them to question their decisions for the rest of their life.  who to be true to when even being true to yourself brings pain.  my heart is with you.  love and hugs

[HannahOne]

Me neither, NarcKiddo. Music says it better.

BigBlue, 

Marcine you found some way to reflect my words. Thank you so much for reflecting back to me. The stark reality. It is what it is.

SanMagic7, thank you so much for being with me. And you can identify. That means a lot. I'm sorry we're in this club no one wants to be in.

I know better what I am carrying now. Which somehow helps me get a better handle on it and makes it a little easier to carry. Grief is love that has no place to go. I'm looking for that place. I'm not looking to receive love, although I do need love, what's driving me, what's eating me up is I'm looking for a place for my love to go. My life force. A place where I can express myself. Where I can be all of me. Where I don't have to be a secret, or feel like a walking bomb.  Where I can pile weeds as tall as my head and my message is understood and received, or at least, tolerated, not immediately trashed, not discarded, not rejected.

I feel so clear right now. In general I feel like my insides are a scribble, a scribble so intense it becomes a solid blur. But right now I feel so clear.

Today I went to a new doctor. I need a primary doctor to run the ship due to my stitch-uation. I haven't had one, don't like doctors. I wasn't going to bother mentioning anything else, the nerve pain, joint pain, fatigue, nausea, trouble swallowing, stomach pain, light-headedness, muscle weakness, genetic disorder she won't be familiar with. She'll just write "functional" and "anxiety" and tell me to drink more water and exercise. My plan was for her to just take my blood pressure and refer me to an oncologist for second opinion.

Put on the paper gown and wait. I hate doctors. Try to stay present. Refer to the text I wrote myself. Rehearse: Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral. Hello, I just need to establish care and get a referral.

The door opens. I hate that part. She sits down. "Is it ok if I record? That way I can look at you and listen better and not look at the screen." Look at me? OK. "Let's get to know you." Get to know me? OK.

My age. My medications, none.  Systems. "Cardiac?" A murmur here and there."Joints?" Hurts."Spine?" Hurts. "Muscular system?" Hurts, weak, constant deconditioning. "Digestive system?" Hurts. "Bladder/kidneys?" That hurts too. "Genitals?" Hurts. "Lungs?" Inflammation, scarring. "Sleep?" Nope, I can't do that. "Ok let's go through the records. You were tested in 2009---that's a painful test---and it was positive....no one offered you this treatment?" Nope. "So in 2016 you were in the hospital, procedure, procedure....but this was never resolved?" Nope. "In 2018 you saw neurologist and orthopedist...but they never gave you this drug?" Nope. "And for gyn they sedate you... because it hurts?" Yup. "Does a Qtip touch hurt?" Yup. "And you fainted in 2016, 2017, you fainted in 2019 ER trip...? No one ever did an echo?" Nope.

She asked me to do some movements and I realized she was testing for the genetic disorder that I wasn't going to bother to mention. "Do you know you very likely have this genetic disorder?" Yup. "Do you know it's in your chart as suspected back in 2010?" Yup. "And no one offered you this testing and this treatment?" Nope.

"You're too young for this much pain, you need to get your life back." I didn't tell her I've spent much of the last four years in bed if my kids weren't home, though lying flat does nothing for the pain except help me hide it. That I do the dishes in short bits. Can work only a few hours a day in bits. "You've been undertreated." Undertreated. I thought I was being aggressive seeing all those specialists. But apparently they just wrote "anxiety" or "unknown etiology." Maybe not having had a primary doctor went against me, no one was putting all the pieces together. Each specialist knows their own area, but no one knows the genetic disorder. It was 2009, 2010, 2016, 2018. In 2020 a new test came out for the disorder, but it was COVID, and most doctors still don't know how to identify and treat it. Now we know better.

Undertreated, neglected. As a child I thought everyone could see right through me, but no one put the pieces together. They just wrote "sensitive," "spacey" and "possible hearing loss?" in my school record. My ears were fine. It was the 70s. Now we know better.

"What's this---ok we're taking that out." "Deleting this." "Delete." "Deleting this." Who knows what my record said. "OK well obviously that was a result of the disorder, adding a note...."

She gave me three prescriptions. Medications that may help. It's all nerve problems, dysautonomia, nerve dysregulation, and nerve pain. But I'm sensitive to drugs. "Yes, you would be. That's why you're starting with a microdose of each. And I'll see you back in two weeks." See me again? OK. 

My kids have it, too, I told her. I was able to get the kids to doctors at a children's hospital who could help, get them medications, treatment. But pediatric doctors don't see adults.

Now I am seen.

"I have it too." She showed me. Her kids have it. No one could figure out her children's pain, she had to do her own research, advocate, demand, navigate. She will do that for me. Referral to her specialist, referral to her cardiologist, referral to her orthopedist. And a gyn who will sedate? Referral. "And she'll treat the pain. It's ridiculous for you to be in pain like this." Referral to rheumatologist. "Once the pain is treated you will sleep. And your stress scores and anxiety scores will go down. This isn't anxiety, it's the physiology of dysautonomia, fatigue, and your nervous system's response to chronic pain." Referral to oncologist. "You can't go through any kind of treatment in this much pain and already fatigued and stressed. We need to get the right medications on board now."

I can't. I don't have to. I am seen. Understood. Not alone. She has it too. "I'm writing medical trauma in your chart." Medical trauma? "Is that ok? That's what fifteen years of misdiagnosis, wrong
treatment and neglect leads to." OK, medical trauma.

If she only knew.

I didn't even have to tell her. My therapist has written me a script. Also on my phone. "I want to let you know I have medical trauma so you can be aware of how I might respond and we can communicate and collaborate effectively...." But I did not practice it. And now I don't have to use it. Relief.

I will have prescriptions that might help.

Even if they don't, I am understood. The record is clear. Doctors in future may not know what my disorder is but they'll know I have it. And know there is medical trauma. Maybe understand better why I can only say "hurts" "nope" and "yup." Why I grip my paper gown. Why I seem "anxious."

Makes sense.

So peaceful inside, all the little me's lying down cozy in bed in safe glowing rainbow rooms and drifting off to sleep. So quiet. So clear.

Thank you, all of me. And thank you all, in the storm, for seeing, reading, hearing, looking, understanding, receiving my piles of weeds/words.