I was listening to wife sleep and the dog snore and thinking all these things at a thousand miles an hour and figured if I could just bore myself to death then I could sleep too. So I got up to write it all down.
Enjoy.
In 2007 I was diagnosed with a Chiari 1 malformation. What that means is that the part of my skull where the base of my brain and my brain stem and spinal chord all come together is constricted because by cerebellum is too low in the back of my head. This creates pressure in the area resulting, most commonly, in migraine headaches. I had my first migraine when I was fourteen years old.
For those of you who have never had a migraine this is not the same thing as having a headache. A migraine is when your head declares war on your life. It makes the little things like light, sound, motion, etc intolerable at best and nauseating at worst. The best thing is that when vomiting occurs it makes the migraine worse thus making vomiting more likely... you get the point.
The reason why I found out I had this condition was because I had torn up my right shoulder and by the grace of God the MRI just happened to barely glimpse the malformation thus alerting my doctors to my condition. It was decided shoulder surgery was the more pressing need and so that was performed, most admirably, by a lovely doctor who looked like Cameron from Ferris Bueller's Day Off whose name I cannot remember anymore.
I was scheduled to have the surgery for the Chiari 1 the following winter and was ten days out from my surgical consult on Feb 1 2008 when I was run over in the parking lot at work. Of course being laid up in bed put off the surgery and while I was in the hospital I got a migraine and the nurse gave me tylenol and phenegran for it which cleared it up quite nicely. My surgeon decided that if my headaches, which were still the worst of my symptoms, could be handled with medication then surgery was unnecessary. I figured if a guy who stands to make a not inconsiderable amount of money on me tells me to not do it, then that advice is worth taking.
So for two plus years this was how I dealt with it. I missed more work than I should because I would get bad migraines which would lay me up for a few days at a time. I took sick time some times because of them but I managed to scrape by and be a reasonably productive person. Our family sacrificed vacations etc because I invariably used up that time being ill but my wife, saint that she is, did not complain inordinately, at least not to me. So we pressed on.
Until this year. When even the pain pills stopped working. Understand I don't take codeine or vicodin because I am allergic to them so I have to take non-narcotic pain pills which are little more than really strong tylenol, but they did the trick when needed. This year however they stopped working. My doctor and I began to discuss surgery again and tried to make contact with the surgeon I had before only to be put off again and again before finally being told that he is only a spine specialist now and so would not be able to help me. We switched to another doctor and targeted trying to have the surgery at the turn of the year.
Then in October I slid off the edge with my health.
The first thing I noticed is that I was tired all of the time. No matter how much i slept or how early I went to bed, foreswearing coffee and five hour energy etc I was tired all of the time. Then my migraines got worse. Not only had they been bad all year, but I reached the point where my head hurt all the time no mater what I did. I had a low level headache or migraine at all times and consequently I had even more trouble sleeping because laying down on my hurting head made it hurt worse which made my exhaustion even more pronounced. Then I started forgetting stuff, and I mean really simple things like things at my job that I have known for years I would forget how to do and would sit for a half hour and try to remember how to do. Then I started falling. For no reason I would be walking along and suddenly I would just be on the ground. Now my hands shake, my vision is messed up and my equilibrium is so shot I feel like I'm drunk every time I walk across the room.
The result of this is that I have missed, besides the last three months of my life, a lot, A LOT of time at work and am currently on disability because my doctor doesn't think I am safe to drive a truck and my boss can't give me light duty. Of course my company is not in the habit of paying people to sit on disability while they wait for surgery so who knows if any of this time off will be approved. I sure don't know. My surgery is scheduled for the first week of January and I spend my time mostly hoping for no more setbacks.
And do you know what the worst part is? My sister.
My sister destroyed her back in a work accident when she was nineteen years old. She is now forty-three and is permanently disabled after struggling with this for twenty-three years. She just became disabled in the last year and is now in school so she can get off the government dole. I remember when I walked a little prouder and talked a lot louder how I used to think, "Oh yeah your back hurts... Bitch we got rent to pay!" And now the shoe is on the other foot.
The problem is that you can be sick with anything in this country as long as other people can see it, or have heard of it enough to know it is serious. No one dares call a person with MS or Cancer or HIV lazy because they just can't do the front yard today. But if you are sick with pain... People get headaches and they get backaches but they don't understand that it is possible for pain to take the world away. They don't understand that your body will steal your life and force you to surrender so much ground that you can't even make it to the front door anymore.
I didn't used to, but I do now. I watch my kids play in the yard and I worry terribly about my family's future as I wait for the surgery I hope fixes my illness; wondering what will happen if it doesn't, and I would like to tell you that this has given me new appreciation for Christmas and what it means.
But that's not true.
I am not any more thankful for the love God has shown me than I was before, I couldn't be. And I am not thankful for this trial, I couldn't be. I have no idea what the future holds I just know I'm too tired to hold onto it so I pray.
And I complain a little and write an "O poor me" bit, but I'm done now.
I am very sad and very scared and I feel very alone because there is nothing I can do and consoling words won't fix this. So if you have read this and are the praying sort then please do. And if you know someone who is sick with pain, try to believe them.
I am out of things to say.
God Bless
Merry Christmas
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