LJI Week 1: Jayus
Mar. 17th, 2014 03:53 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dezaYou can either laugh or cry, and crying doesn't do any good.
In 2012, I was told I would never walk again. At that point, I was 3.5 years into using a wheelchair. My legs had started to atrophy, they told me. Physical therapy would slow down the deterioration, but the damage was already done.
Now, don't get me wrong. I love my wheelchair. It was made to fit me, courtesy of my very generous brother. It's comfortable and supportive and best of all has these great front wheels that light up in rainbow colors. I've worn through sets of tires zooming around with my first service dog, Guinness. Used to piss off the Marines something fierce when we'd outrun them on their PT jogs, too.
But I'm not ready to spend the rest of my life there.
I started making changes in my life. I was already in the separation period for my divorce (second divorce from the same guy; I'll elaborate some other time). I didn't want to be re-entering the dating world in a chair. Some part of me would always be wondering if any interest was from pity, and I have enough self esteem issues without adding that on! I stopped taking my pain medications. I also stopped taking the weekly low-dose chemotherapy treatments. Most of my doctors were horrified, of course. There is no cure for my condition, and shutting down the patient's immune system is the standard course of treatment.
I knew I was in for a world of hurt.
At that point, I was taking enough hydrocodone to knock out a small rhino. It kept me in a haze. I wasn't a good mother, or a good anything else. I just stayed in bed and stared at the wall and didn't care about anything. One of the things I was busy not caring about was the pain. When your body has built extra bits of bone, those bits tend to press on the nerves in odd ways. This causes everything from that tingly pins-and-needles feeling to burning to numbness to sharp stabbing pain, and the pain doesn't go away. Even with the drugs, it's still there, you just don't care about it any more.
The week I stopped taking the pain meds, the section of Virginia where I lived was hit by an earthquake. The quake was followed by a hurricane three days later. Through all that, I was detoxing off of morphine, processing out the last of the chemotherapy, and dealing with the crippling amounts of pain without the morphine-derived buffer zone.
I cried a lot.
I also laughed a lot.
There are points in life when you are faced with a choice. You can give in to the despair of your situation and let it weight you down until you can no longer move. You can say "This is all too much; I can't take any more." No one will blame you if you give in. It's more than any person is expected to bear. Or you can say "To hell with this, I mean to live!"* You can decide that no one, not even an incurable illness, will control your life. You make yourself laugh in the face of the pain. You get up and get on with your life no matter how badly the odds are stacked against you.
I walked.
Now I plan to dance.
Me in my awesome light-up wheelchair at Camp LeJeune, 2009
*Joss Whedon writes the best stuff -- that line from Serenity has become a mini-mantra for me.
This has been my entry for Week 1 of Season 9, LJ Idol. The topic was Jayus, "From Indonesian, meaning a joke so poorly told and so unfunny that one cannot help but laugh." I hope you enjoyed reading it.
In 2012, I was told I would never walk again. At that point, I was 3.5 years into using a wheelchair. My legs had started to atrophy, they told me. Physical therapy would slow down the deterioration, but the damage was already done.
Now, don't get me wrong. I love my wheelchair. It was made to fit me, courtesy of my very generous brother. It's comfortable and supportive and best of all has these great front wheels that light up in rainbow colors. I've worn through sets of tires zooming around with my first service dog, Guinness. Used to piss off the Marines something fierce when we'd outrun them on their PT jogs, too.
But I'm not ready to spend the rest of my life there.
I started making changes in my life. I was already in the separation period for my divorce (second divorce from the same guy; I'll elaborate some other time). I didn't want to be re-entering the dating world in a chair. Some part of me would always be wondering if any interest was from pity, and I have enough self esteem issues without adding that on! I stopped taking my pain medications. I also stopped taking the weekly low-dose chemotherapy treatments. Most of my doctors were horrified, of course. There is no cure for my condition, and shutting down the patient's immune system is the standard course of treatment.
I knew I was in for a world of hurt.
At that point, I was taking enough hydrocodone to knock out a small rhino. It kept me in a haze. I wasn't a good mother, or a good anything else. I just stayed in bed and stared at the wall and didn't care about anything. One of the things I was busy not caring about was the pain. When your body has built extra bits of bone, those bits tend to press on the nerves in odd ways. This causes everything from that tingly pins-and-needles feeling to burning to numbness to sharp stabbing pain, and the pain doesn't go away. Even with the drugs, it's still there, you just don't care about it any more.
The week I stopped taking the pain meds, the section of Virginia where I lived was hit by an earthquake. The quake was followed by a hurricane three days later. Through all that, I was detoxing off of morphine, processing out the last of the chemotherapy, and dealing with the crippling amounts of pain without the morphine-derived buffer zone.
I cried a lot.
I also laughed a lot.
There are points in life when you are faced with a choice. You can give in to the despair of your situation and let it weight you down until you can no longer move. You can say "This is all too much; I can't take any more." No one will blame you if you give in. It's more than any person is expected to bear. Or you can say "To hell with this, I mean to live!"* You can decide that no one, not even an incurable illness, will control your life. You make yourself laugh in the face of the pain. You get up and get on with your life no matter how badly the odds are stacked against you.
I walked.
Now I plan to dance.
Me in my awesome light-up wheelchair at Camp LeJeune, 2009
*Joss Whedon writes the best stuff -- that line from Serenity has become a mini-mantra for me.
This has been my entry for Week 1 of Season 9, LJ Idol. The topic was Jayus, "From Indonesian, meaning a joke so poorly told and so unfunny that one cannot help but laugh." I hope you enjoyed reading it.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2014-03-17 08:37 pm (UTC)I get up.
I walk.
I fall down.
Meanwhile, I keep dancing.
...dance on with your bad self.
(and yay, Kaylee!)
(no subject)
Date: 2014-03-17 09:30 pm (UTC)(no subject)
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Date: 2014-03-18 02:10 am (UTC)I also really like your subtle treatment of the topic--sometimes, there are few reasons to laugh, but even fewer reasons not to, and the laughter is what'll keep you going.
(no subject)
Date: 2014-03-18 07:39 pm (UTC)(no subject)
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Date: 2014-03-18 08:43 pm (UTC)(no subject)
Date: 2014-03-18 10:44 pm (UTC)Also, yay for 'Serenity' reference!
(no subject)
Date: 2014-03-18 11:55 pm (UTC)I gave up pain medications (with the exception of anti-inflammitories) several years ago. I found other ways to cope with the pain. (fibro and RA) It sucks, but I decided I would rather be in pain and aware, than so drugged up I was missing out on life. I understand.
and there was a Firefly marathon on the Science Channel this weekend!
*great big gentle hugs*
(no subject)
Date: 2014-03-19 02:58 am (UTC)(no subject)
Date: 2014-03-19 06:35 am (UTC)It was a brave choice to try ditching the pain meds and usual treatment, and I'm so glad it has been working for you and you've been seeing progress.
The light-up wheelchair, though, is really awesome!
(no subject)
Date: 2014-03-19 11:26 am (UTC)(no subject)
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Date: 2014-03-20 11:08 pm (UTC)Now I plan to dance."
Absolutely *loved* these lines. Loved. And your light-up wheelchair is just beyond fabulous. :)