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Sunday, June 26, 2011

Walking on wet sand

This process brings to mind an analogy of a swimmer at a beach who has been swimming way too long.

That swimmer loves to swim, to race. She sometimes even wins a race, but not often. She usually finishes well, but it always seems like the other swimmers around are better for the race while she's done in at the end. Paying very careful attention to her lifestyle, she wonders why its so difficult to establish a comfortable routine. She tires slowly and recovers more slowly, exhaustion lingering as the others party on the beach in the evenings.

One day, she wants to race badly, but her energy level has reached new depths as her pain soars. Usually, she'd just muddle through the painful fatigue, but it's unrelenting this time. Everything she loves has become an annoyance at best. Even opening her eyes in the morning seems a chore and promises glaring light, jarring noises and an ocean that threatens to drown her if she just dips in a toe. This day, she cries out for help.

A lifeguard runs to her saying, "Hey! What are you doing? You can't swim like this."

She says, "Its been harder and harder to compete lately, but I really don't know why."

"Well, we usually don't dictate what kind of swim suit people can wear here at the beach. But, I just gotta tell you, that chain mail will get you nowhere. You might even drown swimming in that stuff."

"Oh, this? Well, I can't seem to get it off. I figured it was okay as long as I could still get my head above water. But, lately, every time I get out of the water, it takes everything just to walk on the wet sand back to my towel. I just can't do it anymore."

He helps her across the wet sand, "Come on. Let's get you someplace where you can get out of this monstrosity and find something appropriate." 

So, its not a perfect analogy. Chain mail would definitely be a choice, and a stupid one at that. As a matter of fact, I just took on, not off, a bit of metal mesh. Also, I am well aware - this is for all you psychoanalysts out there - that life is not a competition. It's not whether you win or lose, it's how you play the game. Play the hand your dealt. I could go on, but why?

My Chiari malformation was conferred at birth, and I had to go through brain surgery to attempt getting rid of it. Did the surgery even work? I'm still walking through the wet sand rather slowly. I can't even swim again yet. The best we can say at the end of week two is: So far, so good. 


  1. Hi Akilah!

    Hope this message finds you recovering very nicely and free of pain! I am just now reading your blog and it has been very informative and interesting. Your humorous side had me laughing!
    I would have loved talking with you more when we were "room-mates" but I was having such a rough time with nausea & pain, as, I am sure you were.

    I was interested in seeing if you were still having bad headaches this late in the game. I still seem to be plagued by severe headaches but Dr. Weingart said that was normal and to give it time. But it still is very slow going and the ice packs are my best buddy!!!!

    Anyway, your blog is very interesting and informative and will be much more helpful to others than most of the ones I read prior to surgery. Hope you recover quickly and can get back to enjoying those little girls!!

    Take Care!

    Cindy Norvell

  2. Hi Cindy!

    It's so nice to hear from you. I wish I could say your message found me pain free, but I can say that I'm improving and hoping the same is true for you. I've still got some of the nausea. I'm choosing to believe, at this point, that it is a side effect of the pain meds and not a lingering chiari symptom (I was nauseous a lot pre-surgery).

    I do still have bad headaches, although they are a different nature than the ones pre-surgery. These headaches seem to be directly related to the barometric pressure in the atmosphere. It's like I'm becoming somewhat of a weather girl. I have had three days when the headache was so bad, I didn't want to talk. Each time, it rained sometime after the onset of the headache. Then, when the rain left completely, so did the headache. At those times, I would break out the ice packs too.

    Another great discovery was the Chiari pillow. It's basically a firm pillow with a seam sewn down the middle creating a pressure free pocket for your sensitive area. I found out about it and lots of other post-op coping advice from this site

    I'm glad you like the blog. You know that I wanted to be a beacon of light in the midst of the endless complaints from Chiarians. Hope you feel better.

    - Akilah