J I L L K A N D E L

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Brain Surgery, Soup, and Forgotten Months

When I went in for surgery, back in January, I never expected it would affect my life so drastically. But it has. The surgery was necessary to fix a strange occurrence: a vein and an artery had joined together and then a hole developed between them. Every time my heart was beating the artery blood backed flowed through the fistula into the vein. All of this behind my right eye giving me headaches and a constant 24/7 LOUD whooshing in my ear. It’s strange and bizarre to hear every heartbeat. It reminded me constantly of my mortality, of how fragile life is, and how beautiful. 

The doc said I shouldn’t exercise as the hole might grow bigger. He said it could cause problems with my right eye and make it unable to move as the veins behind the eye grew to accommodate the excess blood. I talked to my health care team who all recommended surgery. 

The surgery was successful in that the fistula was packed and coiled, but I threw some blood clots and bled into my brain the night afterwards. The doc drilled two holes in my head to relieve the pressure and drain the brain fluid buildup. It was especially difficult to be in the hospital with cognitive issues and no family members allowed in due to Covid. When your brain isn’t functioning correctly, and there’s no one to hold your hand and advocate for you, it’s a lonely confusing place to reside. 

A few days after the surgery I went home, only to be readmitted for ongoing problems. 

Here’s the strange part. I don’t remember it. 

In my mind, I talked with the surgeon and fell into an anesthesia sleep. I “woke up” a month later having lost all but a few fragments of my memory from the hospital stay and surgery. I was disoriented, confused, and dizzy. My eyes were seeing double. I couldn’t make sense of everyday conversations. I kept forgetting who I’d talked to and what I’d said. 

I spent a lot of time trying to fill in the gaps. Asking my husband over and over what had happened, when, who was there. 

I had a funny conversation with one friend. She said, “Jill, do you remember calling me a few days after your surgery? You were still in the hospital.” 

“Nope,” I answered. Not a clue. What did I say?”

“You said, ‘I heard you are coming over to visit me. And that you are bringing soup.’”

I laughed when she told me. Later, when I hung up, I wondered, “Who else did I call AND what did I say?” 

If you got a weird or bizarre phone call from me in January or February (or even maybe March) I can only say, “I wasn’t myself. Please forget and forgive whatever I said!” 

But if I wasn’t myself, who was I then? 

Who am I now? 

It’s been over three months since my surgery and there is some good progress: the thrush mouth infection is cured; my weight has stabilized (after losing 14 pounds I’ve gained four back); my thinking is back to almost normal (although, my hubby says I have a few problems with short term memory off and on); I’m doing gait therapy for walking and vision therapy for glitchy eyes; my new eyeglasses are great and I can see again without any blurred vision. Huzzah! I was also well enough that I could get the Pfizer Covid vaccines. Both of them. And I’m so grateful. 

But ... 

Yes, but ...

I’m dizzy almost constantly. Which means there are things I just can’t do. Walking is hard. T.V. is out. I can’t drive a car, even riding in one is a challenge. And reading, my old joy - my old friend, is just not a big part of my life right now. I don’t listen to music. I sit a lot. The days are quiet. It’s like my brain has been overloaded and needs space and time to heal, to find its way. 

So that’s me. In this strange liminal space of “Not sick, but not healed”. Somewhere in-between. Moving slowing towards healing. Frustrated. Having good days and bad days. 

I’ve come to learn that healing isn’t linear. I go up and down. I get excited when I’m not “so” dizzy and can go for a walk and then the next day, I can’t. It’s a very strange in-between. Living with hope. Living with frustration. Living. Just living. 

That’s where I’m at friends. 

And one more thing. 

During all these months of distress, change, hope and fear, I got some good news on my next book. Stay tuned for that one! 

In love and in hope,