Getting Caught by the Inevitable

I have a neuropathy called Charcot Marie Tooth, or CMT.

I have lived with it for about ten years, as paralysis overtook my feet and lower legs. I had to learn to wear braces called AFO's which allowed me to walk on feet that had become useless. Over time, as it progressed, I first used canes to augment the braces and then graduated to a rolling walker. I usually didn't make a big deal out of it, although I often put off getting what I needed until the absolutely last moment...or probably should have had it for a while.

Unfortunately, the disease is now progressing in a way that is going to present challenges of several types as time moves forward. It has been in my hands for a while, and just like my feet, I adapted as they weakened. My wife became the jar opener of the house, and I've even had to ask my kids to help me with sticky doorknobs.

Yet, now the weakness in my hands is starting to progress into partial numbness and paralysis. The saving grace up till now has been that it takes very little strength to push the keys on a keyboard, but now my fingers are starting to completely lose their ability to move in certain directions. My index fingers will no longer move toward my thumb, making the G,H,T, and Y keys real adventures. My little fingers are losing lateral motion as well.

Needless to say, this development is going to present serious challenges to my writing career. I' probably should have looked into this sooner, but I guess it's time to start exploring options involving changing my typing style, or even looking into voice recognition software since mouseclicking is getting more difficult too. Sadly, hands are not like feet nd braces will not help them.

Right now, I hate this disease with an intensity that goes beyond words. I just remind myself that if it hadn't been for CMT, I would have never been forced to sit down and write in the first place. It offers some consolation. But now it threatens to take that career away. and if I'm going to continue I'll have to figure some things out.

I'm hoping to find a workable solution. I still have some stories to tell.

CMT Awareness Month Post

Well, it's nearing the end of CMT Awareness Month and I realize I have never made a post about it. I almost chose not to, but in the end a strange sense of obligation compelled me...so here goes.

CMT (Charcot Marie Tooth) is not a very big part of my self image. Even though I've been wrestling with the symptoms of it for nine years now (wow, it's been that long?) I have never really identified with it. The truth is, even after all this time I still don't have CMT in most of my dreams. So I very seldom write about it, even though it's something I'm always compensating for.

Now that doesn't mean I don't think about it, or that it doesn't intrude into my life on a daily (or often hourly) basis. It does, and it's often the source of frustration, anger, resignation, or just plain old tiredness. But it's always been a thing apart from me...not who I am. Sure, I have to make concessions to it, and I hate it, (except for that nifty handicapped parking license plate. That thing rules) but the fact remains that to me it's usually been something I've viewed as an external event. It's just not who I am...so it never really occurs to me to join organizations for people with CMT, or take part in events having to do with raising CMT awareness. I have never really identified myself as part of a group.

And that probably means I'm dealing with a super-sized case of denial.

I wonder why? I'm not embarrassed by it. Actually, I tend to wear shorts that leave my braces openly visible simply because it helps keep my legs from sweating inside the plastic molds, and it also acts as an easy visual cue for other people to understand, without asking, why I may need a little extra room or time to maneuver through an aisle in the supermarket or mall. Hell, I'm paralyzed from the knees down so the fact that I can walk with little more than a pair of plastic braces the same size as my socks is hardly something I'm embarrassed about. So I don't think ego is involved.

If there is anywhere it drives me crazy, it's in two areas. One is not being able to do things with my kids that other Dad's do with theirs. I remember being at the zoo with my son when he was four and he saw another kid riding on his Dad's shoulders. He wanted to do the same, and I couldn't...and realized I never would. Ouch. I don't know how to describe how that felt, other than to say you never ever want to feel it.

The other area is attempting simple tasks that I have had a lifetime to get used to the idea of doing. Now that I'm fighting it in my hands, I have had to concede the husbandly role of Household Jar Opener to Karla. Okay, there may be a teensy bit of ego involved in that one. But other than that, it's mainly just infuriating little things like discovering that things you used to do without thinking (like opening your gas cap on your car) now needs to be planned ahead for. (such as realizing that a tool might need to be procured against that day the fingers will no longer unscrew that cap).

So thats my Charcot Marie Tooth post for the year.

I've got it, but so far it's not who I am. That's not necessarily a good thing or a bad thing. Identifying with it more might actually let me be a little more forgiving of myself when I fail at things, but that's just not where I am yet. I know it could be a lot worse. Some people have to put up with everything I am, and have to deal with pain on top of it. Fortunately, pain was never a very big part of this for me. (except when I have one of my spectacular crashes to the floor...dragging dishes, furniture, and kids down along with me. Trust me, even the Hindenburg didn't do it better.).

Anyways, that's the way it is. I'm a husband...I'm a father...I'm an author...and on the side I struggle with CMT.

Tuesday

So we took Sheridan to his first Cub Scout meeting last night. He recited the Pledge of Allegiance, the Boy Scout, and learned how to fold a flag. Keeping his attention focused where it was needed to be was a bit of a chore, but Karla did an admirable job of riding herd on him. We intend to get him a uniform on Wednesday. He will probably love wearing it.

I haven't written anything this week so far. I'm just letting my brain rest and trying to get things to come to me instead of forcing them. I've been forcing things too much lately. The problem is for me that it's not like always like building a structure, but more like going to a well. Throwing that bucket harder down the well doesn't make it fill with water. I've had a couple of snippets of ideas, but they would be more suited for the Shades series as opposed to either of the novels.

Today is Rowan's Learning Lane, so I will be doing my Starbucks thing. Maybe I'll think of something to write while I'm there.

It's still Charcot Marie Tooth Awareness Week, and today my post will be about the lethargy that comes with it.  In some ways it's the most aggravating part of this condition, because it effects other people as well as the sufferer, and it doesn't have any physically visible symptoms to prove it's real. Anytime I overdo, I end up paying for it by being wiped out for at least a day or two. When I went on vacation with my family, I ran out of steam after four days of being careful to try and not take it too hard, and ended up wiped out for nearly five days after that. It's ridiculous, but it's real. And what's even worse, is that it can happen if I get sick, get an allergy, and occasionally it just seems to happen for no reason whatsoever. But it's real...and it sucks.

And when I say wiped out, I mean it's now an effort of strength just to stand. Staying focused is hard, and trying to give the people around me the proper attention is difficult. It ain't easy. But it's something many of us just have to adapt to. And we do.

Writer's Night Out

I went out with Cherri Galbiati for our weekly writer's night out, last night. For some reason, writing just didn't come up as a topic very much. I guess we just weren't in the mood for it.. Then we were joined by Matt, a friend of our waitress (or is it server nowadays?), Lauren. We ended up talking about lots of things then, especially after Lauren got off her shift and joined us.

Let me take a pause here to give a shout out to Lois, Lauren, Sarah, Ashley, John, Kim, and the rest of the Denny's crew who makes our weekly get together's work so well. You guys are great, and very understanding of a couple of old geezers who want to come in and hog the same booth every week with their laptops. Thanks a bunch, guys!

Anyways, we stayed out way too late and I actually woke up slightly ill this morning when it was time to get the kids off to school. Thankfully, Karla stepped up like a champ and saw that everything that needed to get done...did. Thanks, Karla.

Finally, since this is Charcot Marie Tooth awareness week, I thought I would mention one of the issues I face as a writer with CMT. My problem is that over time the condition/disease has spread into my hands...and not evenly. My left hand is more affected than my right. Naturally, I'm left handed. This means that writing with a pen or pencil has started to get very difficult for me. When I'm having a bad day, it's impossible. Sometimes I worry about this, because hands are kinda important to writer. Fortunately, the spread is very, very slow and I can still type.

But it always kinda sits in the back of my mind that I need to get my writing done while I can. So that's one way CMT affects writing.

On a more positive note, it also gives me a worldview that I was simply incapable of writing from before. Ten years ago, any fantasy hero I would have attempted to write would have been some knockoff of Conan the Barbarian. Now, due to the perspective and insight I've gained from living with this condition, character's like Cargill of Khrem are possible...even though he doesn't have a physical handicap himself, he understands that the world is a lot bigger than him, and has to be dealt with from that standpoint. It makes for a different type of fantasy character.

Oh well, that's it for today. I've got a cub scout meeting for tonight and a whole lot to do before it's time to leave. Bye.

Sunday

It is Sunday, and the glories of the NFL are once more upon us. Today the Dallas Cowboys play the Chicago Bears, a team they should beat...just like they should have beaten the Redskins last week. So nothing is for certain in Dallas right now, as we don't know if the good Cowboys or the bad Cowboys are going to show up to play. On another front, the Texans now get their crack at the Redskins and should hopefully bring them back down to earth.

I didn't do any writing today, and I'm becoming just a little concerned I might be pushing too hard. I've had more and more trouble coming up with words, and I fear I might be drifting into writer's block. I'm very tempted to just take a mental vacation for a week and not worry about it. I haven't decided yet. After pushing out those four novelettes over the summer, and then adding ten thousand words to Argiope, it's just not coming natural right now.

I also did an interview with Lenka for her Lenkaland blog. This time we talked almost exclusively about CMT. I seldom mention my condition...except for the past couple of days because it's been giving me real trouble...and I'm trying to decide if that's a good thing or not. I try not to dwell on it except when it's making it's presence felt, and it's kind of like a suit of clothes I've slipped into and gotten used to.

But today starts Charcot Marie Tooth Awareness week, so for this week I will probably bring it up more often. It does matter, and it's something I have to keep adapting to all the time to deal with...even if I tend to deal with it by promptly trying not to think on it once I've adapted. For instance, it is now in my hands pretty good and I have a very difficult time using a pen or pencil. Some days, it's completely impossible. I can still type, but not as fast as I used to. Sometimes it's not as easy to forget about as others.

But that's for posts later this week. For now, it is time to pull out the chips and drinks, and get ready for some football!

Onwards and Upwards

Last night we took Sheridan to a Cub Scout recruitment. He was almost vibrating with excitement and I thought I was going to have to sit on the boy during the meeting. And of course with my CMT acting up, I barely had the energy to sit upright. Anyways, we signed him up and a lot more of my precious time is about to disappear. Soon, there will be meetings, camp outs, activities, and all sorts of other things involving those two dreaded words...parental involvement. Yep, apparently there is more to having kids than sprinkling a little water on them and then watching them grow up to take care of you in your old age.

Finding time to write is going to get harder.

On the writing front, on online webzine named Dark Fire has agreed to include my story "Storm Chase" in their fiftieth issue...which will be published in early March. It's a great chance to get one of my stories out there in front of people for free. "Storm Chase" was originally published in "The Middle of Nowhere," a horror anthology by Pill Hill Press. It was actually my first story to ever see print, and now it will be my first story to be in a webzine. Not bad for a little story that was originally written as an experiment in one-scene story telling.

Oh well, now I need to go figure out how to mail a book. I promised a signed copy to a blog reader who runs a library. Now lets hope my hands are functioning good enough to sign the thing in at least a semi-legible form. This has been one of the odder phenomenons as the CMT has moved into my hands...I'm losing the ability to write with a pen or pencil, although I still have the ability to type. Different muscles involved, I guess. Oh well, as long as I'm still typing, it's all good.

Not much else to report. I gotta pick up Rowan again today and go do the Starbucks thing. The lady who cleans our house is showing up today, and the place isn't even a wreck. So I guess overall... It's all cool.

Lethargy

Physically, I've been next to useless for the past two days.

My CMT has been acting up, and I've also been flattened with this crushing bout of lethargy. It's all I can do at times to get out of my chair. I'm not sure what has causes this, since I've been careful and I'm sure I haven't eaten any gluten lately. Sometimes, I guess Charcot Marie Tooth doesn't need a "trigger" to act up. I suspect it's the CMT because not only have I been extremely lethargic, but my hands have been trembling to the point it's very difficult to type.

And we certainly want me to keep typing.

Not only have I added ten thousand words to Argiope since I've dusted it off and unshelved it, but last night I had inspiration for my next "Shades" story while I lay there in bed trying to go back to sleep. Think young junior high ne'er-do-well getting crosswise with a hatchet toting Victorian farm wife type of tale. I've already got several scenes of this story fully realized in my head, I just need to string them together into a good yarn.

But I also need to get a move on and shake this lethargy off.

I have Rowan's therapy today, and I have to pick her up from school at twelve thirty to take her there. Fortunately, they have a Starbucks practically next door so I can caffienate myself into a vibrating frenzy while she is there. I also have to take Sheridan to a Cub Scout recruitment tonight, so I have to find the energy for that. But theres even more. The kids snacked on chips yesterday and took advantage of the fact I haven't had the energy to keep up with them.. So the carpet is sprinkled with chips and the house is scattered with debris of wild children run amok. And since my friend Cheri Galbiati is coming over to watch Rowan tonight while I take Sheridan for his Cub Scout encounter, I need to find the energy to muck the place out so Rowan won't be able to hide under all the mess.

I'm too old for this!!!!!

Hitting the Wall

My online friend and fellow Charcot Marie Tooth sufferer, Lenka, describes it as "hitting the wall." It's when you have pushed yourself to far, and the meager resources of your body are simply exhausted.

That's pretty much where I am now.

The family vacation continues, but my contributions to it are steadily declining. The past two days we have taken the kids to the water park at Moody Gardens. This lets the three of them (two kids and a wife) frolic in the water while I sit on rock and watch. That's about all I have left in me anyways. Even the stairs to my resort now take a special effort of will when I come back in the evening. We were considering another day at the park, but the kids came home too red this evening. We'll have to figure out something else tomorrow.

Then it will be time to head home.

I hope the weekend is long enough for me to recuperate from this.

Thanks Lenka!

Lenka, over at Lenkaland.com interviewed me for her latest broadcast. She did a great job, and I did pretty good too...although I still sound like I come from a backwoods trailerpark with nothing but some extra chromosomes to keep me company.

We chatted about living with CMT, The Ways of Khrem, and life and writing in general. It was a very relaxed experience, and I think I'm finally getting over my terror of interviews. Now I just need to watch out that I don't turn into a huge ham.

Anyways, it was nice talking to somebody who lives with the same condition that I do, and who could truly understand what I was talking about...not just the physical aspects of Charcot Marie Tooth, but the guilt and the embarrassment that comes along with having something that wipes you out for a long time after any exertion. It was cool to talk with someone who also had learned to meter her energy, and make allowances when she knew she was about to do something that would deplete her stores.

Thanks again for having me, Lenka! We'll do it again sometime!