One Foot Forward

That's the secret to it all. You put one foot in front of the other and, next you know, you're taking that first step. It's a big one but then so is the second. It's all about putting that  next foot forward. You get discouraged and stop but then you start again. Why? It's the only way you know how to live.

I was getting horribly frustrated about the ads for - I believe it is St. Jude's - some children's hospital where Captain Sully, the guy who made an emergency landing of a jetliner on the Hudson River, calls some sick child a real hero. Why not me? What does that kid have that I don't other than a scarier prognosis? I calmed down recently because I'm trying to cut down on anger and because that little girl deserves as many really good days as she can have. Instead of feeling jealous, I want to send her my best wishes for all the good days she can handle.

The point Captain Sully was making is one very near and dear to my heart. There is a degree of heroism inherent in the way those of us with chronic pain live. Airline pilots spend entire careers training and staying ready for a single moment like Sully's Hudson River landing. That's not even mentioning any military careers airline pilots may have had before civilian flying. Those of us living with chronic pain are in training for something as well. We may never know it but we can touch lives.

Someday, I may smile at someone and get them to laugh in the face of their pain. That's victory enough but some of us are fiction writers and prefer the dramatic. What if that person were planning on killing themselves slowly or quickly? What if they were considering taking up smoking like I did purely because I believed it would kill me? What if someone came to you after the worst day to date in their entire illness and you pointed them toward the hope that tomorrow or the next day would probably be better?

You don't even need to reach out. Some of us suffer from terrible social anxiety. Personally, I consider myself to be pretty eloquent at the keyboard but I would stumble over my own name verbally. Live your own life and deal with your own life's obstacles and that makes you a hero. If you fall down, it's not a defeat. It's just another obstacle.

I've taken a lot of falls recently both metaphorical and physical. I stopped taking my diabetes medication and stopped testing blood sugar out of frustration. I stopped using my CPAP machine because I was sleeping better without it due to specific technical issues that can be resolved. There's no need to waste any time of self recrimination and blame. When you're on the ground after a fall, you can choose to lie there and sulk but there will come a point where you start to feel a little ridiculous and you get back up. Then you put one foot in front of the other to take a step. After that, you take another step. Maybe you fall again quickly but you might not. If you do, so what! Get back up and start forward again.

Don't worry. I'm not advocating that you try to get back up and take these steps on your own. If you're lucky, you have family and other loved ones to help you up and to hold your hand as you take the steps. I'm already thinking about who I'll choose to lean on in the coming days.

Captain Sully will almost certainly never make an ad with me as his hero but I believe he's with all of us in spirit. I am hoping to work toward bringing the disabled community together in this networked world. The idea came to me while I was watching an ad for a website for people with MS. It is MSconnect or something very close. A search on that should get you there sooner or later. Their slogan is "give what you know."

MS and Chiari have symptoms similar enough that doctors often mistake one for the other. That makes me believe Zipperheads and whatever silly name MS patients use for themselves could make good allies. The medicine may be very different but let's get connected and work on getting as many solutions as possible for those every day issues that are different for us. I'm giving you what I know and I want what you know. To put my very small notoriety in the Chiari community where my mouth is, write me at staple11@nospam.msn.com (removing the nospam, of course) and I will set you up to post your thoughts on this blog.

We'll make fun of the doctors, share success stories about how we reduced our pain by one metric iota or whatever. Just remember that you're responsible for what you write. Don't libel or slander anyone, please, and don't write any hit pieces. As Debra, a giant in the Chiari community might say, "Be gentle with yourselves and be gentle with each other."