Welcome to my imaginary blog

Does anyone else think this is hilarious- in a dark and painful way?

I was doing something important to me  (more on that later). Yes, yes, I was over-doing something important to me (my rehabilitation scientist sister in my head). I don’t do it unless I overdo it so that is really beside the point….I was doing something and my body was not cooperating. First my legs, then my hands. Being as I am sort of accustomed to uncooperative legs, my hands were the important part of this task. But they checked into Hotel California and you know the rest of that story.

I found myself a weeping heap on the floor, with my 1-year old daughter looking at me confused (was this a game? Should she pretend to cry too?) and my sensitive magic boy running over to hug me. Luci sat in my lap and Rudy hugged me tightly while I melted into an MS-y puddle on the living room floor.  I tried to explain, 5-year old style:  “Have you ever been really frustrated because your body wouldn’t let you do something you really wanted to do?” He hugged me more and said “I love your belly. I love your hands. I love your legs. I even love your guts.”

Really, you’d have to have a heart of stone to not sob even harder and more uncontrollably after that kind of guileless, authentic expression from a 5-year old who is usually a dinosaur and not a boy at all.  How can we start out so kind and become so hard (more on that later, I’m sure)?

So my partner rescued me and my children from a rapidly devolving scene of desperation and grief.  I said to her: “I should write that on the imaginary MS blog,” only this time, I think I actually will. 

So I grab my laptop and escape from the scene of the melt-down. I get ready to write the first entry in my imaginary MS blog that I might be about to make real, and I realize my hands are so weak and so burn-y that I cannot type.  My life-line.  This is what I do.   This is how I process.

Some healthy part of myself, well, healthier than the distraught toddler who wanted to throw the hapless computer in the pool, whispered a reminder that I have dictation software. Imagine! Dictation software bought for me by the college where I teach because I was having trouble typing. For over a year I carried the mic in my bag, strictly out of guilt, because I had never set the program up (sorry taxpayers). I had never set the program up because although I have adjusted (kind of) to a leg brace, sneakers, a scooter, a powerchair, a minivan with a wheelchair ramp, wearing ice that looks like a bullet proof vest all summer (6 loooong months in Arizona), yearly catheters in my arm for steroid “pulses” and a thousand other indignities, I could not bring myself to get help typing.

It doesn’t end there. I wish it did. This would be an essay about coping and adaptation and it would have a happy ending and I would be whole again.

I found the mic exactly where I left it, and plugged it in. I started talking to the computer. Just the voice-training module.  Just the training module. But nothing happened. Nada. Nothing registered. The computer looked at me blankly. I talked louder. I enunciated better. I cursed like a sailor. Blank stare. The program I had ignored for so long was ignoring me. The lights are off. No one is home. There is no f*^&*ing dragon recording my surrender in text.

It’s typing or nothing. Typing or exploding from the pressure in my head of trying. Trying to type; trying to clean; trying to be a regular mom; a regular person; a person who doesn’t want to collapse every minute from the effort of trying so hard to do anything.

One day we will live in a world where our thoughts are immediately translated into what we want to say, the way we want to say it.  In this world, I need a five year old to open bottles for me and my legs are about as viable as the national budget. Said 5-year old is scooting out of the room right now on his bike, my grabber tool in hand to play with and torture his sister.  

The idea of me keeping a blog is absurd, even for a person prone to absurd ambitions. I don’t return emails or texts. I don’t answer my phone or often check my messages. I am an introvert and a poor communicator. But this imaginary blog continues to lengthen in my head, which I can only describe as a circus- but thankfully more Circe du Soleil than Barnum and Bailey.  And I wonder….is there anyone out there to whom these thoughts, this relentless, droning monologue about who I am and what it means now that my body is captive to Multiple Sclerosis, make sense?

Welcome to my head. It’s marginally more functional than the body to which it is attached.