Today the pain is relentless and over the top. I just got off the phone with my friend Anne and I was sobbing. I said the truth that I've been thinking of for awhile now, which is that I don't want to live this way anymore. It's not that I don't want to live; I don't want to live like this.
Too many days are spent lying on the couch, never even getting out of my pajamas.
The last few mornings, I've been overcome with sleepiness, despite this new diet, which I'd been hoping would help, but it obviously isn't doing much. I felt an initial burst of energy, but my state has dissolved into a type of strange slumber. I've been buying healthy foods, cooking good meals, getting enough sleep, going to the gym a few times a week, but what's it all for when I only end up back at square one? Why bother when life is merely surviving and not living?
This afternoon I spent a few hours on the web, looking for other surgeons in the country who've perhaps had more success in treating this condition than the ones I've been to, but I don't see how they're any different.
I also found my way back to an old support group list, which I'd forgotten about. Apparently, I was there eight months ago, hoping to find help, just like hundreds of others from around the world who feel somewhat better after surgery, only to decline back into a diseased state. It was strange to see my name and read my words, realizing that nothing has really changed since then. I did have another surgery during this time, but the pain left me for just a few days before it came throbbing back.
It's an unbearable existence.
I saw Richard Branson on TV today and was reminded that just before all this started, I was planning to take flying lessons, not so much to learn how to fly, but to do a funny photo essay of the experience. I'd even bought an aviator cap and goggles, and had storyboarded the goofy adventure, hoping I'd have funny teachers who'd be willing to join in on the fun. I even had the airport and flight school picked out.
But that's all behind me now. And the cruel truth is that, despite all of my explorations into the meaning of suffering, chronic pain is meaningless. I simply drew a bad card in life, and it's not much more complicated than that.
I began writing this blog to give meaning to this experience, but I'm finding that, despite my best hopes and efforts, I'm not going to write my way out of this. My hope was that through my writing, I could help others, and of course, myself. I was praying that if I could find a path out of this mess, I could maybe provide hope for those laboring through their own unthinkable existence. But I see now that there is no way out. This is what it is, and judging from my research and my experience, it's not going to change.
And so I have to decide...do I want to live this way for the remaining 25 or 30 years of my life? What's the point? Five years ago, my depression over this landed me in a psychiatric hospital as I was suicidal. But the feelings I have now aren't so much based upon depression but rather on a logical conclusion that this is just no way to live.
When I've had thoughts like this before, my nieces would immediately come into my mind, and what I would be taking from them if I were no longer here. I'm the only aunt they have, and as my own aunts were so important to me growing up, I know that if they didn't have me in their lives, they would be the less for it.
But my thinking has shifted tonight. They're young; Sarah has just turned three, and Catherine will be five in January. Their parents are wonderful, and with or without me, I know they'll be okay. It would be a shock for everyone if I were to end my suffering, but my family and friends all know what I've been through. I'm sure they would forgive me. Yes, there would be anger, but not at me, I don't think. They would simply feel sad that such suffering could take out such a vibrant person...a person they loved.
That's all I have tonight. I don't know that there will be any more posts to write, no matter what decision I make. This blog has been an 18-month experiment, to see if it could somehow help, but I think I've reached the end.
I'm tired and in agony. And I can't stop crying.
This is no way to live.
******************
Too many days are spent lying on the couch, never even getting out of my pajamas.
The last few mornings, I've been overcome with sleepiness, despite this new diet, which I'd been hoping would help, but it obviously isn't doing much. I felt an initial burst of energy, but my state has dissolved into a type of strange slumber. I've been buying healthy foods, cooking good meals, getting enough sleep, going to the gym a few times a week, but what's it all for when I only end up back at square one? Why bother when life is merely surviving and not living?
This afternoon I spent a few hours on the web, looking for other surgeons in the country who've perhaps had more success in treating this condition than the ones I've been to, but I don't see how they're any different.
I also found my way back to an old support group list, which I'd forgotten about. Apparently, I was there eight months ago, hoping to find help, just like hundreds of others from around the world who feel somewhat better after surgery, only to decline back into a diseased state. It was strange to see my name and read my words, realizing that nothing has really changed since then. I did have another surgery during this time, but the pain left me for just a few days before it came throbbing back.
It's an unbearable existence.
I saw Richard Branson on TV today and was reminded that just before all this started, I was planning to take flying lessons, not so much to learn how to fly, but to do a funny photo essay of the experience. I'd even bought an aviator cap and goggles, and had storyboarded the goofy adventure, hoping I'd have funny teachers who'd be willing to join in on the fun. I even had the airport and flight school picked out.
But that's all behind me now. And the cruel truth is that, despite all of my explorations into the meaning of suffering, chronic pain is meaningless. I simply drew a bad card in life, and it's not much more complicated than that.
I began writing this blog to give meaning to this experience, but I'm finding that, despite my best hopes and efforts, I'm not going to write my way out of this. My hope was that through my writing, I could help others, and of course, myself. I was praying that if I could find a path out of this mess, I could maybe provide hope for those laboring through their own unthinkable existence. But I see now that there is no way out. This is what it is, and judging from my research and my experience, it's not going to change.
And so I have to decide...do I want to live this way for the remaining 25 or 30 years of my life? What's the point? Five years ago, my depression over this landed me in a psychiatric hospital as I was suicidal. But the feelings I have now aren't so much based upon depression but rather on a logical conclusion that this is just no way to live.
When I've had thoughts like this before, my nieces would immediately come into my mind, and what I would be taking from them if I were no longer here. I'm the only aunt they have, and as my own aunts were so important to me growing up, I know that if they didn't have me in their lives, they would be the less for it.
But my thinking has shifted tonight. They're young; Sarah has just turned three, and Catherine will be five in January. Their parents are wonderful, and with or without me, I know they'll be okay. It would be a shock for everyone if I were to end my suffering, but my family and friends all know what I've been through. I'm sure they would forgive me. Yes, there would be anger, but not at me, I don't think. They would simply feel sad that such suffering could take out such a vibrant person...a person they loved.
That's all I have tonight. I don't know that there will be any more posts to write, no matter what decision I make. This blog has been an 18-month experiment, to see if it could somehow help, but I think I've reached the end.
I'm tired and in agony. And I can't stop crying.
This is no way to live.
******************
TIP:
Enter the amount, and click "Tip" to submit!
desert_rat
Algis Kemezys
cheapguitar
thefuddler
caroline marie
fernsy
Salon.com
Comments
I wish I lived near you
I wish I could come over
I wish I could do something, anything.....
I'm scared for you tonight.... and so sorry for this pain
Please do try another surgeon, please try. They are NOT always the same. They have different skills, different trainings, different understandings.
Your nieces... you cannot be replaced. You cannot be.
I'm not saying anything right... I'm trying to get something off into the universe for you...
love, love, love
- Susan
Rated.
Then I am going to make a suggestion... PLEASE ask your doctor about something called Prialt. Prialt is made from the toxin of a sea snail, it is 1000 times more potent than morphine and other opiates and (best of all) is NON-addictive. The biggest drawback that *I* have found to it (and I was one of the initial patients that it was tested on so I have been on it for several years now) is that you wind up wearing what LOOKS like an insulin pump that pumps the medication directly into the fluid around your spinal cord. It is TRULY a "miracle drug" for those who suffer chronic pain. It is NOT just for people who suffer from one type of chronic pain... it's for anyone who is in chronic pain that other forms of pain relief have been unsuccessful for. PLEASE before you make the choice that you are currently thinking of at least TRY Prialt.
I know it sounds like I am "pushing" a particular drug like a pharma rep but the fact is that I would have been in a wheelchair about 5 years ago if not for my choosing to be part of the initial study with regards to the effectiveness of the drug in question and my continuing use of the drug in question.
More gentle hugs. Along with a few dozen healing thoughts and prayers.
Ely
I wish that if I were in the same room with you right now, I could make a lap and you could curl up in it. I can't say that I understand your sustained physical pain, but mentally, emotionally I was once in so much anguish I wanted to end it all. As I was reading how tired you are with this new food regimen it struck me how maybe your body is responding well to it and wants to rest and recuperate. Does that ring true at all? That maybe it's trying to marshal its defenses? I haven't a clue; just being hopeful. You sound like you need some. I will keep you in my prayers, whether or not you believe in that sort of thing.
I won't say anything trite like "hang in there" but I do hope you follow up on MrsRaptor's recommendation and at least investigate this medication. Surgeons are very different. I have a roster of orthopedic miracle workers who keep me mobile. They're better than other doctors, which is why professional athletes and dancers go to them. You might still find a doctor who is better than average, which is what you need. It sucks to be on meds all the time. It sucks to have surgery or some intense procedure every few months. Believe me, I know. I have no way of making that better. I can't for me. The only thing worth living for in the end is your connection to others.
I think about you a lot.
I am sorry. I remember banging my head (literally) against a wall hoping to make the pain more focused and less overall. It was dark. I get that. Please let me know if more personal contact might help.
Keep trying.
Please.
This health experiment Has Just Begun. Every health experiment like this needs a good month of Honestly working the program. And being loving to all your parts whilst you are honestly doing it. If you need sleep, your body is not lying to you, do you think? No. So give your Beautiful Self Every Good Thing you need to Succeed. Goddamn it. You are worth it. Your words are worth it. Your words heal us. Your art. And your self. Whether or not you know this yet.
Valid in what you feel and say, and while others WILL disagree, I have yet to see much meaning in suffering. It is akin to a hand of poker and getting dealt the worst one ever....but in this game there's no trading in the cards and you won't ever win.
But I do know this: you wrote "need you" and I hand it back and say "DITTO."
Somehow in the tiny crevices where cynicism has yet to reach its unwieldy, carnivorous hand.....hope stays lit, an ember against a sky of darkness.
Your gift is writing, tho I know this offers little comfort..... and maybe the there is comfort is :
to start, your neices won't fare as well if Auntie is gone and somehow must explain why you are suddenly gone.
then, there's me ad others somewhat like me, who suffer and argue with Pain and give up and go on and quit and cry and try and wonder and just the gentle understanding, which I would take I would take I would take away from you with a *SNAP* of my fingers I would, an understanding that strangely enough offers said ember another light "fheewww" of breath to help keep it alit.
You and expression are 'required reading' for those who hurt and more so for those who cannot comprehend.
Hang on li' bird and walk on toe in front of the other.
Pain is not dismissed nor feelings invalidated but you know,
I need YOU. Keep writing, please.
I am listening and I hear you.... A