Monday, December 28, 2015

Brain Aneurysm Foundation

Gary tuned the radio to the ball game last night.  As I was falling asleep, a commercial grabbed my attention.  "Gary, did you hear that?  There's a Brain Aneurysm Foundation!  I never knew that."  Well, he did.  He said he used the website a lot in my ICU days.

I grabbed his iPad and started reading.  I was up far too late.  But reading the stories -- it was so compelling.  I told myself that I was just reading to see if any of the stories mentioned arachnoiditis.  But had I not given myself that excuse, I still probably would've kept reading far into the night.  Or morning....

The statistics page tells me that I'm in a small group of those who have only a small impairment.

Most people who seek help for aneurysms do so because of terrible headaches.  If people have "the most horrible headache of their life" that may be reason to seek help in ER.  On the other hand, many people have no warning signs of aneurysm.  While in the hospital, I thought (based on questions from doctors) that I had had no warning signs.  I hadn't suffered from freaky-bad headaches.  I didn't smoke.  My blood pressure was beautiful.  I didn't have the normal signs of stroke: weakness in a limb, uneven smile, blurred vision, slurred speech.  But it turns out that pain above or behind the eye is a sign of aneurysm.  That had been going on for more than half a year, and I hadn't recognized it as anything serious.  I was concerned about glaucoma and went for an eye exam.  Of course it turned out my eyeball was fine.  So I ignored the occasional pain.

Reading people's stories -- oh, how those resonated with me!

People talked about fear whenever a headache started.  "Is this going to be another humongous thing?  Will my brain explode again?"

People talked about how life is divided into the "before aneurysm" and "after aneurysm" times.

Robin wrote, "No matter how normal we may seem, believe us when we say we don't feel normal."

It's helped to read about how others mourned and grieved over the loss of "the old me." 

People mentioned how they run their finger over the scar.  It seems weird to me to touch the incision site, to feel the dent in my skull.  But I do it nearly every day.

Nobody mentioned arachnoiditis.  One man did mention a spinal tap to relieve the problem of blood pooling and contaminating the cerebral spinal fluid.  

One survivor wrote about "flat affect."  She said the doctor told her that she was likely to feel uncaring, to feel emotionally unresponsive.  I've experienced that.  Gary was so glad when my eyes teared for joy when Paul and Mandy announced they were expecting a baby.  Emotions are beginning to return.

People talked about having unrealistic expectations of themselves.  They would try to do what they used to be able to do, thinking they could (or should) be able to accomplish what used to be easy.  But they couldn't.

Survivors talked about memory lapses.  They said they'd stop in the middle of sentences to search for a lost word.  (And yes, I know that's part of aging and we all deal with it.  This is more, though.)  People talked about slower processing, and how reading or listening must be slower for me to be able to understand.  (I noticed that online training at work took me a lot longer this year than it did pre-stroke.)

Patients reflected on whether they wanted other people to know about the brain trauma.  On the one hand, sometimes people know about it and treat you differently.  Some patients don't want that stigma hanging over them: Brain-Injured Person.  On the other hand, when people around you don't know about the brain trauma, the patient so often feels compelled to explain ... to apologize for being "the post-stroke me" who is not as efficient or strong or smart or witty as I was previously.

Gabriele wrote about this apologizing, realizing that sometimes she was ashamed of the "after-me."  She wrote about needing to take more notes, make more lists, slow down, and ask for help.  It was interesting to read this after yesterday's Bible class, where Pastor talked about our tendency to long for olden days, "better days."  But the Christian life is in receiving and giving -- in that order.   We always want to be the ones giving/doing.  But sometimes we need to be in the position of having others help us, others give to us, as they serve Christ by caring for us.  Gabriele wrote about a Lent-2 sermon (Gen 12) which referred to Abram's being "banished to the promise."  We usually think that banishment is from.  But she talked about being banished to God's mercy.  That fits with what Pastor talked about, how we are not to repristinate bygone days, but live where we are, today, receiving God's mercy and His gifts, and living in love toward the neighbor that we have today. 

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