Friday, January 15, 2010

Carnival of MS Bloggers #53

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Happy New Year!!

Here we are in 2010. Wow. This will be the 3rd year in the Carnival of MS Bloggers' existence. Can you believe it?! We've had two years of brilliant writing and sharing by MSers of the blogosphere. Thank you so much for reading and for supporting each other with such open arms and hearts. MSers truly rock!

What The H***?
by Judy at Peace Be With You

What the H*** happened
to my life, the one I planned?
It’s sure not this one.

I’m used to making
lemonade out of lemons,
but this is too much.

There is gold here, yes,
but I tire of panning
and getting pebbles.

If MS Is A Gift, Where Do I Go To Return It?
by Zoomdoggies at Howling at the Moon

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.

I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants

A Hero's Journey
by Judy at Peace Be With You

It’s okay to cry.
It’s not lack of bravery.
These can coexist.

Crying can free one.
Stolidness can imprison
a voiceless heart.

A hero’s journey
helps us to understand fear,
not avoid it.

Pity Party, Anyone?
by Mis at Just My Thoughts....

I talk about strength, coping, educating, and support here a lot. But, there's another side to living life with a disease like MS: Pity parties. It struck me after talking to a friend that the image I portray of myself here isn't entirely accurate. "But Mis, you're so strong". I hear that so often, and it always baffles me, because Lord knows I don't feel strong at all. Truth is, most days I am afraid of my own shadow and the shadows of my future. While I do want to encourage those either living with MS or know someone with it to empower themselves with the strength knowledge can give, I don't want to paint myself as some stoic pillar of strength either. So... today I want to bring you along to my pity party.

Yes, I most certainly DO have pity parties too. Most days I go about life in relative peace of mind, but some days I wake up and just think "URGH!" Thankfully, my pity parties don't last long. I spent the first six months post diagnosis in one huge pit of depression, and I learned from those dark days I can not allow myself to wallow in what is versus what used to be. These days my down spells typically last anywhere from a couple hours to couple days, but never very long overall. So why have pity parties at all? Simple really: Because I am human. I really believe anyone struggling in their life has the right to feel, process, and deal with those emotions. It's when we don't deal them that they grow into something much deeper and darker. I've been in that dark place, and I have no intentions of going there again if I can avoid it. For me, letting myself have "ok my life sucks" moments allows me to feel and process those emotions, and then move on.

My pity parties usually consist of a lot of sadness, and are usually brought on by a symptom worsening that particular day. Last night for instance, I had a small one. The left side of my face had been bugging me all day, my left leg simply did not want to work correctly no matter what I did, and I'd been having girdle band pain all day. I had gotten up to use the washroom and my leg just hurt so bad as I limped along. The muscles just refuse to relax sometimes, and trying to walk on a cramping leg is rather painful. My husband heard me cursing under my breath as I made my way through the living room, and asked what's wrong. My response? "I just don't want to have this damn disease anymore." The minute the words left my lips, it was like a flood gate. I ended up in the bathroom for a good 20 minutes just to have a good cry alone. I had had enough, I was in pain, I was frustrated, and I just didn't want to have this wicked, nasty disease anymore. Logically, I know no amount of tears or cursing is going to change a thing. I can curse up a blue streak bad enough to make a sailor blush, and I can cry so hard I fill the bathtub, and when it's all said and done I'll still have MS. But dang it, I don't care. Sometimes I just need a good crying, angry moment to let it all out. A moment to say "poor me, this sucks" I can then calm down and move on.

So while I don't want pity from anyone else, sometimes, I do have to allow myself a little pity party for myself. It's my way of coping and moving on without falling into a true depression. And you know what? I truly believe that's ok, if not healthy. Better to have a crying moment in the bathroom than months in depression, right?

For all of you struggling in your lives, be it due to MS, another illness, or simply life circumstances: Remember it's ok to have moments of weakness. It's ok to cry, and it's ok to be mad as hell. Allow yourself to have a little pity party when needed so you can process those emotions. Once you're done cursing and crying- leave the party and rejoin your life a stronger, calmer person. It's great to have strength the ability to cope with all life throws at you. But when you reach the point you're thinking "The next person to say 'but you're so strong!'...I'm going punch out", it's time to let yourself have a much needed pity party. It's ok to be human- even with all our flaws and imperfections.

Be well all :)

Expressing Anger 
by Judy at Peace Be With You

Anger is lethal
to the mind, body, and soul,
yet needs expression.

This powerful force
can also right many wrongs.
Safe release is key.

We MSers must
monitor which of the two
angers we express.

Finding Balance 
by Judy at Peace Be With You

So many brave ones
face crazy uncertainty
and never complain.

Many admit fear,
acknowledge they are so scared.
Which are better off?

Fear paralyzes.
Denial can do the same.
Somewhere balance lies.

This concludes the 53rd edition of the Carnival and the beginning of 2010!!

The next Carnival of MS Bloggers will be hosted here on January 28, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 26, 2010.
Thank you.
Comments for this post.


  1. Lisa, wow. I love how you have woven a theme through this issue, and I love how you took my poems and inserted them appropriately with a relevant longer piece. It's like a musical piece you've composed here with(I don't know what the technical term is) accent musical flourishes. Thanks for bringing attention to this issue of needing to be able to say on occasion that MS sucks and having a good cry about it. And thanks lastly for honoring my poetry.

  2. Just as Judy wrote above...You have integrated these written pieces like a symphony...reminding us to just be honest with how we are feeling day to day...grieving is expressed in so many ways...we all have healthy grieving to do.