Five years ago this month the phrase Multiple Sclerosis entered my life as a possible diagnosis. I was 50 years old, had never been sick in my life and I was so stunned I could not even say the words, never mind acknowledge the prospect.
The last week in August 2005, I had been hospitalized for a spreading paralysis that was ultimately determined to be something called Transverse Myelitis. TM is frequently associated with Multiple Sclerosis, but no one was admitting anything at the time. I was told ‘possible MS’, when they knew for a fact it was definite MS. I went months without any disease modifying drugs. But who knows if they would have made any difference?
I’ve been on Copaxone and kept relapsing. I declined Avonex because of the side effects. Tysabri was pretty good for two years, but the last 18 months I have been getting steadily worse.
Before I got sick, I was very comfortably off. I had a great career that I had worked hard to develop. I was successful and happy. Since being diagnosed I have been laid off three times. I have brought my house back from the brink of foreclosure once. I have been out of work since February and my head is definitely slipping under the water again.
I am not a good patient. I do not have a good attitude. I do not see any benefit at all to having MS. “I have MS but MS doesn’t have me” is the biggest piece of bullshit going. MS has you by the throat and you are helpless in its thrall. “That which does not kill me makes me stronger” is a pretty crap saying as well. Nietzsche was a lunatic.
MS does not make me a better person, or stronger, or braver, or cause me to stop and smell the roses. It mostly makes me miserable, cranky and very, very sick. MS is a relentless thief that has stolen my life and my future.
Granted, I do keep going. But I am not happy about it, although you have probably already figured that out by now. On the other hand…well, there isn’t much of another hand. I do have incredible friends, amazing children, a remarkable grandson, readers with stories that humble me. These things hold me up when I can’t do it myself.
So this will be my MS blog, snarky, bitter, maybe funny, all about surviving however we can, always real.
FAQ about me:
Piercings? Two in each ear, the second hole dating to 1977. I was waaaay ahead of the crowd.
Tatoos? No. My children collectively have more than enough for all of us.
Ever been arrested? I’m saving that story for another day.
Marie, The MS Renegade
Michelle, thank you so much for your kind remarks. Thanks for the encouragement, I welcome input on the site. :)
Kevin, I really appreciate your thoughtful comment. I am so sorry you also know what it is like to deal with chronic illness, especially at such a young age. Grief, anger, making sense of it are all ongoing processes, I think, and they are not linear. I have found that just as I think I have mastered one, another pops up. Or I take many steps backwards. I guess it is like everything else in life, a work in progress.
As for understanding suffering, one of our late pastors told a wonderful parable about suffering and how it doesn't have any point except to bring us closer together to help each other endure it. I will have to post it again, but it can be found here on my Nourish blog: http://nourishourselves.blogspot.com/2008/02/suffering.html .
Thank you for commenting Kevin. I hope you will visit the site and add your input.
As someone with a chronic illness, I relate. I think in trying to make sense of suffering, one has a tendency to reach for a reason why it happens. I think for me suffering can be instructive, but sometimes it's just senseless agony.
It takes a long while to process and grieve when a life is so utterly changed by any major illness. For a while, I was angry at my fate and angry at God. And by "a long while", I mean years. But fifteen years in, I have made something close to peace with it. Part of my perspective is that now, at nearly 30, I've had the active symptoms for as long as I haven't had them. And even before that point, I had an undiagnosed anxiety disorder. So in some ways, I've always known sickness.
I've also known others, like you, whose onset was much later in life. They remember what it was like before and are still in the process of adjusting. I hope you continue down that path while remembering to go easy on yourself, too.
Michelle, thank you so much for your kind remarks. Thanks for the encouragement, I welcome input on the site. :)
Kevin, I really appreciate your thoughtful comment. I am so sorry you also know what it is like to deal with chronic illness, especially at such a young age. Grief, anger, making sense of it are all ongoing processes, I think, and they are not linear. I have found that just as I think I have mastered one, another pops up. Or I take many steps backwards. I guess it is like everything else in life, a work in progress.
As for understanding suffering, one of our late pastors told a wonderful parable about suffering and how it doesn't have any point except to bring us closer together to help each other endure it. I will have to post it again, but it can be found here on my Nourish blog: http:/ / nourishourselves.blogspot.com/ 2008/ 02/ suffering.html .
Thank you for commenting Kevin. I hope you will visit the site and add your input.
You are brave and honest and I like the humor that you put in your post. Keep writing.... it could save your life. I know
As someone with a chronic illness, I relate. I think in trying to make sense of suffering, one has a tendency to reach for a reason why it happens. I think for me suffering can be instructive, but sometimes it's just senseless agony.
It takes a long while to process and grieve when a life is so utterly changed by any major illness. For a while, I was angry at my fate and angry at God. And by "a long while", I mean years. But fifteen years in, I have made something close to peace with it. Part of my perspective is that now, at nearly 30, I've had the active symptoms for as long as I haven't had them. And even before that point, I had an undiagnosed anxiety disorder. So in some ways, I've always known sickness.
I've also known others, like you, whose onset was much later in life. They remember what it was like before and are still in the process of adjusting. I hope you continue down that path while remembering to go easy on yourself, too.