Kara Lynn .NET Blog

He slammed me to the ground again today. Got me when I wasn’t looking. Flipped me over backward. My weak spot. And when I go backward, my bobblehead whips back from the spindle where my neck used to be, and it is the first part of me to crash the ground. I feel my brain ricochet inside my ringing skull. The rest of the body avalanches down after, piling and twisting extremities upon themselves. I feel sick and barely conscious, lying on the ground not moving, I sense my body, head to toe, waiting for injuries. Rosa wants to lift me up, but I don’t let her. I feel I might fall apart. I need to wait, to be sure I’m still intact, and for a while, I only feel fuzzy, disassembled. Finally, I let her help me to a chair. I have a nasty headache for about an hour, something in the left side of my neck is pulled and hurting, and my left thumb is sprained, swollen, stiff, and very sore. The damage to my body is minimal. The damage to my spirit is catastrophic.

-kara

A new friend and pALS (person with ALS) asked this question on one of the forums: “When was the day that you came face-to-face with the monster?”

Here is my answer:

July 3rd, 2007

Although the monster had been courting me for many years, his advances were rather feeble, and he continuously failed to get my full attention. He was somewhat like a bee that followed me… his buzzing so constant that it just became part of my life and I learned not to hear it. Occasionally, he would sting, disrupt my life a bit, but I would work around it. I just kept moving, any way I could, while his poison worked through my mouth, face, throat, neck, fingers, hands, arms, shoulders, respiratory, trunk, and hips. In my defiance, I felt I was winning, until July 3rd, 2007 at about 11:30 PM.

Lew, Aiden, and I had just arrived home from a day out followed by grocery shopping. Lew had brought Aiden, then 3 years old, into the house while I unloaded the bags of groceries from the rear of the minivan onto the driveway so Lew could carry them up the stairs and into the house. There I stood, in the driveway, surrounded by paper bags full of groceries. I was wise. I would not attempt to carry them in. Then, while standing still, my weight must have drifted slightly backward. I swayed. I felt the back of my heel brush one of the bags, and BAM! I went down! Backwards! I gouged out two holes in the back of my left hand, badly sprained that hand and thumb, and smashed the back of my head. But this was not a fall. I was slammed down, pushed without provocation or warning, by the invisible monster that had grown in my shadow while I was not looking. He had my attention now.

I lived in a lot of fear for a long while after that slam. Fear of walking. Fear of confidence. Could I risk being confident in my diminishing ability? I felt so slapped in the face, so shown up, so punished, so beaten and put in my place.

I bargained with the monster. Take my hands, my voice, my breath, but don’t take my legs you son of a bitch!

Losing my mobility is my biggest fear. I do not have the support for that loss.

I like to outsmart my ALS. We are dancing, and of course my ALS believes he is leading. We’ve been dancing this dance a long time, every day, day after day, and although he throws in a new step or an unexpected turn now and then, I’ve learned to predict his very particular style (”know your enemy”, they say), I’ve learned to see him coming, I’ve learned to poise myself when he tries to trip me up, I’ve learned new ways to move and moves to avoid, I’ve learned that he is always here, and we will always dance.

Is it just me?! I finally bought Leopard (Apple’s latest OS for Mac) and installed it on my iMac. I’m sorry to say this out loud, but I can no longer hold back… It’s ugly!!! And it looks, smells, tastes like some MicroSoft nerds have been messin’ with the recipe!

Additionally they’ve dumbed the interface down a lot… Perhaps I shouldn’t worry my pretty little head about such things! And Front Row just sucks now! I can’t read the shrunken, grossly hi-lighted blue glow titles from my bed anymore! It’s like they recruited some old MicroSoft bowties and left the “innovation” and “design” to the cubicly-minded white and pasty flab heads. I’m so disappointed. I want my Apple back! Bring it back!

-kara

Video: Tom’s Dream - A World Without ALS
The Story of Thomas and Jacqueline French

Took my little man to the park on Friday and we played tag! He won!

You should have heard his giggles as he chased me around the outfield! I don’t know if he was laughing out of joy, or because I looked so funny trying to run… I felt like a giant bird with long stick legs, lifting and trying to stride as far as I could with each step… like a stork… the way they take those slow deliberate and big steps as they wade thru water. That’s what I felt like… a stork wading thru water. I was laughing at myself a lot too. Silly mama stork and her tickley gigglish boy.

Rosa took the photo with my cell phone.

I stopped lithium carbonate after just 4 weeks, because of multiple health problems, not all from lithium. Anyway, I’m good to start again, this time at a slower pace on increasing the dose, BUT… during week 2-4 of being on lithium, I had a big wave of progression in my arms and, to a lesser degree, in my speech. I don’t usually progress that rapidly. I was also sick with a respiratory infection at that same time, but strangely, my progression usually stops during illnesses, so I don’t think that was a factor. This progression has been permanent.

I’m so afraid to rock my boat… and I’m so afraid not to. If my son were not so dependent upon me, I would head into stormy seas to battle this beast… but as it is, I need to proceed as if he’s in the boat with me. Perhaps just 150mg/day for a good long while… until I’m seaworthy.

I hope lithium actually helps. I had to discontinue for a while. The study I was in increased dosage way too fast for my body’s tolerance. I will begin again on low dose, and only increase as tolerated.

Here’s a news clip about lithium ALS study.

On Father’s Day, someone I care about wrote “I wish my son was in contact with me. I miss and love him so much. I just wish he would forgive me. This is always a bad day for me!”

To his son, I write:

We all die, and when those we are unsettled with die, it will be excruciatingly final, and for everything we wished we had done, resolved, come to terms with, forgiven… it is undeniably too late, and with us we will carry all the undone, and it will weld it’s weight upon us, becoming our burden, wearing sores into our souls, for the rest of our lives.

I have an ALS belly… ya know… it hangs out. I’m skinny, weigh 118 pounds, 5′7″ tall. My belly’s not fat, just round and sticking out like a 4 or 5 month baby bump. Nothing I can do about it, so I kinda just love it… I adore it… my ALS belly. Think I’ll get some crop tops and proudly flaunt it. They say it’s all in how ya feel about yourself… so I love my ALS belly.