Category Archives: sad

frustration, sad, seizure, stroke

Slings and arrows

This morning we had planned to go see a dear one in the hospital. We had booked with him yesterday evening to see him at 10:30 am today.

I woke up and as I was starting to get dressed, I began to hear clutter in my mind, things that repeat, and I knew that was bad. My husband asked me a question but I had trouble answering him. That, of course, is a huge warning sign so I lay down in bed.

A while later, I managed to call my husband upstairs and he lay down with me and rubbed my back because I was sad and frustrated. I felt terrible to have been in that situation again. I guess I keep dreaming that it will get better. It was then 10:15. I asked my husband to call and delay our visit. He did, just saying that something came up and we’ve had a delay but that we’re still coming.

I was so sad to not be better. That was a hard morning but the worst was yet to come.

We made a run to the person’s house to grab some things he had asked for and we got to the hospital. My husband dropped me and our eldest at the door.

We got upstairs and walked in overhearing him on the phone with another loved one. He interrupted the chat saying we were here. Then they both laughed that we are late and the person on the phone said she has to invite us an hour earlier to get us there in time. Due to the fact that he is hard of hearing, the phone was set very loud and so we overheard the whole thing ourselves.

Hahahahha! Isn’t that hilarious?!?

No. It isn’t. I cried in the hospital and immediately explained how insensitive it is. I told him, through tears, that I had a seizure at home and that’s why we’re late. He cried too and was clearly ashamed. But I don’t care. They should know better.

It aches that even the ones I most trust are so numb to it all.

This is me and I might NEVER change. I guess times like this help remind me to be more selective about the invitations I accept. I will never stray from my family. The rest, well … passive-aggression is unacceptable. Even the kids (my sons who are already very sensitive, kind, compassionate young people) were pretty sad too.

mean

I post this in the hope that someone somewhere out there will see a similar pain and not feel so alone. As I explained to the kids, part of the important wisdom is knowing when to keep distance from those who hurt you.

I look normal so maybe I make an easy target for the slings and jokes and arrows. So be it.

I remain strong and in love with God. I am alive … so the ignorance cannot undo me.

Be well.

family, sad

Missing my Mom

Two years ago from Feb 28 I lost my Mom. More accurately, we ALL lost my Mom.

In that one day, I witnessed the most bitter loss of my life and the most liberating release of hers.

There aren’t really words to say how much it hurts or how deep I feel it or acutely I miss her.

Hard to believe that she never knew me as a stroke patient. I am thankful to the Lord that He spared me from this while I was caring for her.

I would love to feel her arms around me or her hand stroking my face… but I wouldn’t have kept her in that misery for any benefit.

When Mom was leaving we all gathered around her bed, we knew it was happening, and her brothers and their wives were there as well as Dad and my brother and Kirk and I. We held hands and we prayed and we waited quietly while I whispered in her ear that it was okay to let go and go Home. We promised her to take care of each other and we waited while she released her firm grasp on our hands.

I remember after she passed and the pain had stopped assaulting her, I finally was able to get back into bed with her and cuddle her after many months of not being able to hold her properly… so did my brother… and for a moment we snuggled up to our Mommy the way we always had from the first breath we took in this world.

We love you Mom!

And I have a bone to pick with you… what gives you the right to knock me off the ladder on my swift ascent to your side?!?! *smiles* Just kidding, Mom, I know it was because I was impatient and way ahead of schedule… either that or the people at this end who fixed my leak were on your side 😉

See you Mom!

Jen
xoxox….

brain injury, frustration, sad, stroke

Invisible Gag

What does a brain injury look like? An elderly person with a droopy smile and a physical disability… A person in a wheelchair or a reduced physical ability… A car accident victim… Not me – none of those are me – no one can see my injury or disability.

Yes, the woman on the right looks more like me. And yes, maybe she is disabled!

What you may not understand is that I walk well, I have no phyical outward sign, but…

I am afraid of noise, I can’t decipher sound including conversation without a visual cue. I need hours to write messages to my satisfaction and I can’t read a paragraph without restarting at the beginning over and over and over. I can’t always think of the right word (shape with 4 equal sides… I see it… I can draw it but I can’t think of “square”). I can’t remember things I have been told and I forget to take my medications. So now I wear a watch that beeps for my meds but when I am focused on something else I consciously teach myself to ignore other things (this often means I ignore the watch beep and I miss meals and the need to pee or a person trying to talk to me or whatever). I find tv commercials overwhelming and I can’t read a newspaper. I am not able to drive and I am scared by the noise and crowd on the bus.  Nonetheless I have been rejected by the OCTranspo as not being handicapped enough to qualify for their assistance…

One time, at a hospital, I was told that I had the “worst” type of disability because it is the kind that no one can see. No one can believe and no one can imagine the chaos and pain and desperation inside my skull.

I am told to “get well” and that I will be “fine.”

Well my “stroke” is even kind of a misnomer. Put simply, my brain bled uncontrollably and it was damaged. To save my life, they sawed into my head to recover as much as they could. The brain damage from my hemorrhage is not healed and my blood drainage in my brain is still clogged and please understand that I may never heal. Might I improve? Yes. But I might not. If I do regain former abilities thanks to the human “plastic brain,” let’s all just consider that a happy surprise. What is me is what is NOW.

Don’t panic… but I ask you all to forget the “old Jen”. She changed on Sept 8 and “new Jen” was like a phoenix who rose from the ashes and spread her wings and flew… shaky and sad but flew and flies still today… And yes, I look just like the old Jen… But I am not trying to recuperate – I am trying to walk on my new path.

My poor husband has the burden of being everyone’s access to my status. Please give him a break. My husband, sons, and family are all also trying to cope with the new me… He has not left me and he has never been angry about his new wife. I guess, with the almost-result of being widowed made him want me no matter what was left of me when they closed my head.

These days Kirk carries more than his fair share so please don’t add an additional burden for him.

I may have invisible disabilities but he is the one who is untreated for the trauma of his wife’s sudden collapse, brain hemmorrhage and weeks of unconsciousness etc.

I was able to cope on the phone when I lived in a hospital with controlled noise and sensory stimulation. Months later, in a “real life” home and setting, my brain gets tired and I rest. Even writing my blog is draining… And after my rehabilitation days I want to just sleep – and most of the time I do (my brain knows what it needs and I love my old dented brain).

Please feel free to write but be patient for my reply. And don’t panic – it doesn’t mean I am lost, or depressed, or dead, or anything bad. It is a miracle that I can respond at all.

And when you see me I will look “fine” and I am better than fine… better just because I am alive.

But I have started to dislike seeing people knowing that I am being watched and evaluated and the result is “wow, she looks fine” or “I think she’s better/worse/quieter/happier than I expected”

I also dislike “don’t worry, you’ll be fine.” What does that mean? And fine to whom? And what about the traffic jam and raging forest fire in my head? Is that fine? Will it ever stop? Who knows? I don’t. The medical team doesn’t. So I have stopped expecting “fine” – today … right this second … is good enough for me.

From now on let’s set a date for me to be re-inspected. February 2012. Not a minute before. And I reserve the right to withdraw that date.

I hope you can sense the frustration in my text because it is the only hope I have of sending you the message. And usually I temper myself and edit to show the happy/upbeat me. Well… today this is what I need to tell you. And if you can’t imagine what I am feeling, I hope you will never have the misfortune to feel it yourself.

Ok. Now time to do some yoga, and shout out loud in my empty house, cuddle my dog, spend some mindful time, have a nap and maybe book a haircut for the first time since last spring (April? May?).

I will hate going for a hair appointment in a busy noisy salon (that I used to love) but I hate looking like an abandoned lawn even more!

Be well,
Jen

P.S. I wrote this between rehab sessions. I was in a cafeteria style room with about 12 adults. Here is my brain fatigue from its pattern chasing every sensory input:

  • fan noise
  • scribble a sentence
  • clatter of dishes
  • fix sentence
  • someone’s laughter
  • re-read para 1
  • trolley in the hall
  • re-read para 1 again (did I already do that?)
  • hammering somewhere nearby
  • someone coughs
  • a light turns off in an adjacent room
  • what was I saying?
  • laughter behind me
  • I’m crying and I can’t stand it anymore
  • I cover my eyes and ears and that feels better but to write I need another hand so I remove my hand shields and I dive right back in
  • someone drops something
  • force myself to focus
  • …. Writing …
  • yay! done!
  • oh shoot! now I am late for the next session, I missed meds, I didn’t eat, do I have to pee? No. Yes. Not sure but I will anyway just in case.
  • I’m cold. Why? Don’t know.
  • darn where is my next session?
  • I need to rest
  • and so on…