Sunday, April 5, 2009

Before and After

Reflections on what was then and what is now.

Before. Before was me, hitting the ground running every morning. Having my babies at home. Abundantly healthy. Going to the doctor every, maybe five years or so? Never getting sick. Never taking naps. Never ‘resting’. Widowed at 39, raising four kids, working full time, buying my own home, painting each room of it myself. All the gardening, all the maintenance: me. Taking my kids abroad. Traipsing through every inch of London. Every museum in New York. Walking, walking, walking. In graduate school for my Master’s. Never giving a thought to putting one foot in front of the other. Loving my life.

The middle. Numbness in one hand. Then the other. Ignoring it because…it’s nothing. Then numbness in my feet. Pain in my back. Soooo tired. Sometimes, I can’t empty my bladder. Surely this is my imagination. Feeling a spreading squeeze around my middle. Hard to breathe. Then hard to walk. Then…

The emergency room. Admission to the hospital. Bladder cath. CAT scan. MRI’s. Lumbar puncture. Blood taken and taken and taken. A diagnosis of Transverse Myelitis, possibly caused by Multiple Sclerosis. But, a condescending young neurologist bluntly says to me, at 50 you are too old for Multiple Sclerosis.

Oh yeah?

After. The neuro every three months, my GP every three months, a monthly infusion of Tysabri at an oncologist’s office. Tysabri, an immunosuppressant that can allow a fatal brain virus to get a foothold. Blood work every month. Ten daily prescription medicines (thirteen pills all together). IV steroids periodically to treat particularly intense exacerbations.

A cane. A walker. Even a wheelchair sometimes. No more hitting the ground running. Ha, no more running. No more traipsing anywhere. The beloved house I can no longer care for is crumbling around me.

Relentless pain. Disobedient feet that feel as though they weigh 200 pounds each. Constant fatigue. Muscle spasms that twist me like a pretzel. Twitching, jumping limbs and digits. Perpetual balancing: “If I do that in the morning, I won’t be able to do this in the afternoon. Which is more important? Which do I choose?” Because I can’t have both.

Anywhere I go I have to know, are there stairs? How many? Is there close parking? Is the bathroom nearby? Is there water so I can take my medicine? I have to think about literally every move I make. Or can’t make anymore.

Fear. Unremitting, unshakable fear. I am single. Who will want me now? How would I tell someone? Is this the day I won’t be able to take another step? Is tomorrow the day I won’t be able to get out of bed? Will I go blind? Will I choke on my next meal because I can’t swallow? Who will take care of me? Where will I live? How much longer do I have?

This is my new life. In four years, I have not yet learned to love it. But this is the only one I’ve got, so I keep trying.

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18 comments:

Fortress of Solitude said...

You are an inspiration, Marie. You are beautiful. I hope that you see this in yourself, as well.

And damn that Doctor Doogie for saying 50 is too old . . . period!

Take care of yourself,

Angela

tricia said...

Fortress said it far better than I can-- you are an inspiration. I hope today will be one of your better days Marie.

Marie said...

Angela and Tricia, thank you both so much for your kind words and generous spirits. (hug)

Dan Brantley said...

On the bookshelf behind me is a Bible laying on its side, on top of the Bible is a copy of The Prophet by Kahlil Gibran, and on top of that, a crystal Micky Mouse waving from a crystal airplane. God is in the details.

Thank you for sharing, Dan.

You're welcome!

Da Old Man said...

{{{{{{{{{{Marie}}}}}}}}}}

Just because.

Marie said...

Dan: I love the image! It speaks volumes. God is in the details.

Joe: Right back at you buddy! :)

Oh my gosh, I am so touched by these responses.

Vic said...

You are so brave. In every part of your life. I'll be thinking about you whenever I start to feel sorry for myself.
Such grace.

Marie said...

Oh Vic, thank you. What a beautiful thing to say.

But I think feeling sorry for yourself is highly underrated! lol There's nothing like a good pity party. :)

Thanks to all of you for your good thoughts and lovely, generous words. You have no idea how they life me up!

Bubbie said...

I enjoy your blog Marie. Open, honest and just my kind of humor thrown in. I too was told that it was unlikely to be MS at my age....and that was in my 40's.

Cockroach Catcher said...

Good blog. Got it through Grand Rounds.


The Cockroach Catcher

Lidian said...

You are incalculably brave and eloquent. Thank you for sharing with us in your wonderful blog.

xx Lidian

Lin said...

Wow, Marie. Good post. Dramatic to say the least. I have a dear friend with MS and she goes through the same things. I pray for you both.

Proud Mom said...

Oh Marie, people all over the world have no idea what it's like to live in your world, a world once so full of energy and movement, now so paralyzed by an evil disease.

Yet you are such a remarkable human being, therefore I believe that you will refuse to give up, to loose hope, to crumb under the torment of MS. I believe that you will live the life that God has chosen for you with dignity and poise.

You may no longer be a graceful ballerina but you most certainly are a dancer. So keep the music playing, for it is in the rhythm that we find comfort.

Angie said...

praying for you...

SLColman said...

You are an inspiration. You find the strength each and every day to keep going and keep fighting...

I just this week was told by my PA that I most likely have fibromyalgia and am awaiting a rheumatologist appointment for confirmation and probably treatment plan.

Marie said...

Thank you to all of you for stopping by and leaving these wonderful remarks!

Bubbie: I am so sorry, that just stinks. Isn't it crazy to be told you are 'too old' for something when you know you are still young?!?! Youngish? lol

Catcher: Thanks very much. I am so pleased you like my blog.

Lidian: I am not sure how brave I am, but thank you. Stubborn might be more like it! lol

Lin: Thank you for your prayers. They are much appreciated.

Lisa: You sweet girl, how beautiful! Thank you so much.

Angie: Thank you so much for praying for me.

SL: I have my fingers crossed that it is not fibromyalgia. But if it is, hang in there, you will be fine. Reach out for all your resources and just keep moving forward. :)

Anonymous said...

Hi,

I don't know if you know about this site, but you might find it useful: www.patientslikeme.com.

Stay strong,
N

Marie said...

Thank you for reading, N. I appreciate your kind and encouraging words. Thank you for the web site suggestion, too. :)