Saturday was a “real” MS day.

I stayed up too late on Friday. I had a skype call with niece the eldest, I was working on something and chatting to a friend in Australia and I looked at my clock and it was way past late. Late enough that it was early again.

I had to be up at quarter to 8 for a breakfast date and I got about 5 hours of sleep.

So Saturday I woke up and I did the inventory and my eyesight was murky, my leg was numb and my hand couldn’t grip. I was exhausted. I don’t mean “gosh, I’m a bit tired today”. I mean “walking takes effort today. Thinking takes effort today. Simply being upright is taking a visible effort of my will.”

I had to cancel my dinner plans on Saturday. I managed to get through the day, but mostly I was half asleep. Mostly I wound up sleeping through Saturday, waking up long enough to curse all the stuff that I needed to do, with insufficient energy to actually do any of it. Mostly I gutted through.

And it was hard. Really hard. I have gutted through 48 hours without sleep during a go live. I have gutted through months of living on 4 hours of sleep. It wasn’t as hard as it was Saturday. Saturday was starting to think there would never be enough sleep again, in my entire life.

On Friday my friend was trying to tell me I’m inspirational. And I’ve never gotten when anyone tells me that. Albert Einstein invented the theory of relativity. Shakespeare wrote some of the most beautiful words in the English language. William Wilberforce fought against slavery in the British Commonwealth for 27 years before it was abolished. Wang Weilin stood in front of PLA Tanks in Tiananmen square to stop an army.

I am a neurotic hot mess.

Tell me I’m smart, tell me I’m capable, tell me I’m a good boss, tell me I’m pretty, tell me I’m special. 

Tell me things will be as they always were. 

Today was the MS Walk. Travis did a brilliant job organizing it. We raised just over $1,200, which is pretty good for 2 months.

It was this moment when I came up to the boys and their shirts, well, I’ll just show you the picture

boys and I







They boys said they were walking for me.

The walk organizers had shirts and bibs that said “I’m walking because I have MS.” I wasn’t ready to wear one.

Stupid, I know. It’s not like the MS is going away. I just can’t  . . .

Oh, hell. I don’t know what I can’t. I can’t stand in public and be any less than perfect. I can’t be anything less than competent.

So, if you want to tell me I’m inspirational, well, I guess I can’t stop you.

But it seems to me that you could do better.

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3 Responses to Inspirational

  1. Needles says:

    There is a lot to be said for being a neurotic hot mess and being able to admit that to the world. I think that is why I like you and have always liked you. You might shy away from the hard stuff, but you get there, neurotic hot mess and all.

  2. Reese says:

    We could do better? We could do a whole hell of a lot worse. Thinking of you always….

  3. Mali says:

    Wow. You are tough on yourself. You’re honest and you’re compassionate and thoughtful, and that’s really important. You don’t need to be perfect. Remember, the cracks let the light in. And your light is worth it.

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