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."
Friday, January 4, 2013
Still Going Strong
I don't want anyone to worry about my last post. Rage is just another symptom now. The most important people in my life are aware of it now and my doctors will be soon. My goal is to just to soldier on. There is a certain degree of bravery involved in enduring something. As long as we do all that we can to cope and to avoid hurting others, we have had a good day. While I won't compare myself to a soldier under fire or some other sort of conventional hero, I can take pride in my endurance.
I was terribly upset because I had hurt my in-laws for no good cause as if there would be a good cause for such a thing. I'd forgotten about Melissa and her uncanny ability to help me. Judy and Barbara seem to have picked up Melissa's method for dealing with my raging moments as well as Melissa herself. They listen to what I'm saying, try to pick out anything of importance - Is he raging because he's overstimulated or because the house is on fire? - and then let the whole thing go when I'm done. It's too much to ask of someone but, as Melissa reminds me, they are family and that's what families are supposed to do. It's a shame I didn't learn that until now.
Looking at rage as just another symptom isn't a cop out. I look at my symptoms straight on and in every other way I can come up with and then work on tactics to deal with them. It sounds silly but I think I'll try counting to ten the next time I feel like lashing out at Melissa. That's what they say to do when you need to pick up a baby when you're frustrated. I'm very thankful that my rage has never been physical because it would not be appropriate to forgive myself so easily.
So, looking at this head on, I'll issue a few apologies and ask for suggestions. At the doctor's office, the docs have me cornered physically whenever they enter the room. As silly as that may sound, it has always made a difference to me. I may have to ask them to turn around and give me a ten count when I can feel myself ready to snap. It can't hurt to ask. In my own home, I can try to wait it out through a ten count and then leave the room if it doesn't work. To my great surprise, there can be big benefits to not leaving the room. If I leave the room, I can always come back.
It doesn't count for much because I haven't exactly caught on with a wide following but let me offer anyone who reads this a blanket apology. If I have insulted you over the past couple of years, I'm sorry. While the circumstances were the fault of no one, I could have handled them better. I'm sorry and now it's time to move on.
I was terribly upset because I had hurt my in-laws for no good cause as if there would be a good cause for such a thing. I'd forgotten about Melissa and her uncanny ability to help me. Judy and Barbara seem to have picked up Melissa's method for dealing with my raging moments as well as Melissa herself. They listen to what I'm saying, try to pick out anything of importance - Is he raging because he's overstimulated or because the house is on fire? - and then let the whole thing go when I'm done. It's too much to ask of someone but, as Melissa reminds me, they are family and that's what families are supposed to do. It's a shame I didn't learn that until now.
Looking at rage as just another symptom isn't a cop out. I look at my symptoms straight on and in every other way I can come up with and then work on tactics to deal with them. It sounds silly but I think I'll try counting to ten the next time I feel like lashing out at Melissa. That's what they say to do when you need to pick up a baby when you're frustrated. I'm very thankful that my rage has never been physical because it would not be appropriate to forgive myself so easily.
So, looking at this head on, I'll issue a few apologies and ask for suggestions. At the doctor's office, the docs have me cornered physically whenever they enter the room. As silly as that may sound, it has always made a difference to me. I may have to ask them to turn around and give me a ten count when I can feel myself ready to snap. It can't hurt to ask. In my own home, I can try to wait it out through a ten count and then leave the room if it doesn't work. To my great surprise, there can be big benefits to not leaving the room. If I leave the room, I can always come back.
It doesn't count for much because I haven't exactly caught on with a wide following but let me offer anyone who reads this a blanket apology. If I have insulted you over the past couple of years, I'm sorry. While the circumstances were the fault of no one, I could have handled them better. I'm sorry and now it's time to move on.
Wednesday, January 2, 2013
Rage: the New Old Symptom
I am a pretty even tempered person who has never raised a hand in anger since I was a young child. Therefore, it is pretty disconcerting to feel that seething anger toward well meaning people or situations that are no one's fault. I decided that it was a character flaw and that I was unlikeable. That's when I heard a radio broadcast/PSA on WMMR about traumatic brain injury and rage. The rage they described was unlike anything I've experienced which was why it made some sense to me that there could be a link. I have some significant brain damage but it did not happen suddenly as the result of a mortar shell. God help those vets who are dealing with this all at once. I had time to adapt as the damage was taking place.
Writing this is shaming so I find myself beating around the bush in my head. Every time I go to the pain doc, Melissa has to tell me to calm down. I think I'm just winding up for the potential conflict but the truth is that I've started feeling a towering rage toward people who are trying to help. Usually, they escape the brunt of it because I've loosed it on Melissa accidentally but my cold rage came right out of me toward the pain doc last visit.
It gets worse. Every time I feel my symptoms triggered by having a few people around, the rage builds up in me even worse. Melissa has heard many a tirade about her family whom I consider to be my own. They are wonderful people but they are not silent like I am most of the time. To be more accurate, I am so used to the ambient noise I put out that it feels normal to me. If someone else puts out that same amount of mere background noise, I can feel my temper ticking.
When it explodes, I don't scream and yell while waving my arms wildly. No, I'm much worse than that. I say mean things to those whom I love and/or care about. Those mean things are targeted very carefully to cause maximum hurt per word. My rage is efficient and cold. I want to see my targets flinch or force them to fight back. I accuse my beloved of not loving me though the specifics are not blog appropriate.
Then, the force of the rage is expended and I feel an equally awful sense of loss. How could I possibly say these things to my favorite people? One time, shortly after I started to make the connection, I begged Melissa's forgiveness and she shrugged it off. She had been aware of this for quite some time but had come to the conclusion before I had. She has been willing to consider it another bit of sickness that she vowed to accept in October of 1999.
I need to do something about this. Just because I can justify calling it a symptom does not make it right. It's not only hurtful to others but it hurts me. How long before I lose all distinctions between me and my hot tempered father? Of course, that's another example. The man never actually hauled off and decked me no matter what his urges were. The damage he did was mostly through well targeted comments that might as well have been designed to destroy. He and I both use smart bombs instead of relying on carpet bombing. The target is destroyed but the surrounding area might well not notice.
Usually, these entries are meant to help people by showing them how I survive and handle symptoms but not this one. In this case, I'm asking for help. How do I deal with this towering rage triggered by someone preparing a nice meal and, therefore, banging pots and pans slightly? I'm telling you that this is about people who are trying to help or otherwise be nice to me. If it were about intent to harm me, it would be a pleasure to give them both metaphorical barrels. How do I warn people that this might happen? No one (except possibly you) reads this blog. I am asking your forgiveness in advance until I get this under control.
Writing this is shaming so I find myself beating around the bush in my head. Every time I go to the pain doc, Melissa has to tell me to calm down. I think I'm just winding up for the potential conflict but the truth is that I've started feeling a towering rage toward people who are trying to help. Usually, they escape the brunt of it because I've loosed it on Melissa accidentally but my cold rage came right out of me toward the pain doc last visit.
It gets worse. Every time I feel my symptoms triggered by having a few people around, the rage builds up in me even worse. Melissa has heard many a tirade about her family whom I consider to be my own. They are wonderful people but they are not silent like I am most of the time. To be more accurate, I am so used to the ambient noise I put out that it feels normal to me. If someone else puts out that same amount of mere background noise, I can feel my temper ticking.
When it explodes, I don't scream and yell while waving my arms wildly. No, I'm much worse than that. I say mean things to those whom I love and/or care about. Those mean things are targeted very carefully to cause maximum hurt per word. My rage is efficient and cold. I want to see my targets flinch or force them to fight back. I accuse my beloved of not loving me though the specifics are not blog appropriate.
Then, the force of the rage is expended and I feel an equally awful sense of loss. How could I possibly say these things to my favorite people? One time, shortly after I started to make the connection, I begged Melissa's forgiveness and she shrugged it off. She had been aware of this for quite some time but had come to the conclusion before I had. She has been willing to consider it another bit of sickness that she vowed to accept in October of 1999.
I need to do something about this. Just because I can justify calling it a symptom does not make it right. It's not only hurtful to others but it hurts me. How long before I lose all distinctions between me and my hot tempered father? Of course, that's another example. The man never actually hauled off and decked me no matter what his urges were. The damage he did was mostly through well targeted comments that might as well have been designed to destroy. He and I both use smart bombs instead of relying on carpet bombing. The target is destroyed but the surrounding area might well not notice.
Usually, these entries are meant to help people by showing them how I survive and handle symptoms but not this one. In this case, I'm asking for help. How do I deal with this towering rage triggered by someone preparing a nice meal and, therefore, banging pots and pans slightly? I'm telling you that this is about people who are trying to help or otherwise be nice to me. If it were about intent to harm me, it would be a pleasure to give them both metaphorical barrels. How do I warn people that this might happen? No one (except possibly you) reads this blog. I am asking your forgiveness in advance until I get this under control.
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