Sunday, November 23, 2008

Here Are Some Things I Do Remember

I'll warn you all now, this one might not be funny. I'm feeling a little...what's the word? Maudlin? Not depressed really, just, well, blah.
My therapist, whom I love dearly, has given me the task of journeling again. So far, only random things have been written down but last night I started writing about the things I remembered about myself before MS moved in and I thought that I would share a few of them with you.
Here goes:

Things I Remember About Myself Before MS

I remember laughter, I remembering enjoying the feeling. I remember the hubs and I laughing together a lot.
What I can't remember is the last time I actually laughed. I mean truly, unabashedly laughed. Sure there have been times when I've done a "ha ha" to make someone think that I thought whatever they were telling me was funny, but I can't remember the last time I laughed and meant it.

Smiling is another thing I remember.
Sure, I smile now but it's not a genuine smile with feelings behind it.
No, now the smiles are used to put everyone else around me at ease.
I see the look on someone else's face and I know that they need some sort of assurance that, even thought I feel like I've been hit by a truck who then backed over me and hit me again, all is right with the world.
So, I wake up those old, rusty smile muscles and give them the best smile I've got in me.

And you can see their shoulders become lighter. All is now right in the world. Their world anyways. My world is still turned upside down.

That's one of the things that I have found so interesting about this disease.

Since being diagnosed eight months ago, I've spent a majority of that time assuring everyone else that it will all be okay.

What I really feel like doing is throwing a full on, two year old, body thrown to the floor, feet kicking, arms swinging, screaming at the top of my lungs, temper tantrum. But then someone might knowthat everything is not okay, right?

Another thing I remember, back in my "Super Mom" days, going non-stop all day, volunteering all day at school, dance classes, girl scout meetings, etc. and when I finally to bed, I would climb in between the silky sheets and just breathe.

I loved that feeling. The contentment and happiness to get into my bed. I would even say, either to my husband or to no one at all "God, I love this bed!" sigh....

I now hate my bed.

When fatigue set in and then came the exacerbations, I was forced to spend so much time in my bed, alone, away from my family who were downstairs going on with life. I grew to hate that very same bed, with those very same silky sheets. I wanted to join my family. I wanted to fill my chair for family dinner. Hell, I wanted to cook the meal for family dinner, but my body wouldn't let me.

I would lay there, in that bed, alone, and yell to an empty room "I HATE THIS BED!!" Then I would go on to add "And for that matter, I'm starting to hate my body! What kind of a body just decides to just STOP WORKING???"

Another thing I remember is being able to actually remember. I didn't need to make millions of lists and post it notes just to get through the day. I could remember an entire grocery list in my head. Now, if I have to go to the store for one thing, say coffee beans, I have to write it down! One thing!

I'm starting to feel like a child again who shouldn't be trusted on their own. I push myself too far, I can't remember to turn off the oven (that actually has not happened yet by the way) and honestly, I'm a bit of a mess. Maybe I need a nanny.

So, there you have it. Just a few of the things I remember about me and life before MS came to live in my body. Do you all remember anything?


Bald Ben said...


I'll be honest this one hits me a bit hard. First, let’s discuss the laughter. That hurts a bald guy, I mean you have been reading my blog, right? And if I do say so myself, that is some hilarious shit. Oh okay, okay....not your cup of tea, I get it. No worries. I'll try not to take it personally.

However (and more seriously) I don't know if you have actually perused my older posts but I wrote a rather lengthy entry about identity and the loss there of.

I have read your post a few times, it makes me a bit sad for you and for myself. I understand where you are coming from. I want so badly to be the guy I was just a few years ago, but it seems that guy is slipping away quicker and quicker.

I feel bad for all those around me who knew me as that person, and I know it is so hard for any of them to understand the change, particularly my wife and my children. I want to be the person I was when she met me. I was a lot more fun then. I was a lot less moody and amazingly spontaneous. My boys weren't born yet and I wonder will my sons ever know me as the person that I am or that I was?

One of the most frustrating things is that I wake up that person, I still know who that person is. I am the same guy, and unfortunately he is sorta locked inside. When I start acting myself I am only able to keep it up for a short time, and I often feel so defeated. It is beyond frustrating. I wish I had an answer, not sure that there is one. This is far worse than any of the other symptoms of MS, for me at least, this is the most disabling.

Meanwhile we need to comfort those around us like our messed up immune system somehow is connected to there’s, “it’s gonna be okay” and all the platitudes we have to use to reassure often times confound me. I find myself comforting when isn’t it I who should be the comforted?

People on the outside (like a know the outside is where all the straights live.) seem to need just as much if not more consolation. I suppose if they hear us say it’s okay enough times then they don’t have to worry as much. (It’s a sick game I play with my father. I won’t get into it.) The support they are trying so hard to give, however earnest, just ends up falling flat because they can’t understand what it is like, and we have to smile and nod and act reassured when inside we are falling down.

I know it isn’t much solace. We are all but powerless to stop any of it. So, I am going to try to enjoy as much of it I can. I want to be the man I was before, but I don’t know that this is possible. So I have to be the man that I can be, my family needs and deserves that much. It isn't easy, but it is the only choice I seem to have right now.

Keep your head up, that way you might see that truck coming next time.

Sorry if this is long. I am at work and there is nothing doing so I have a ton of time to sit here and write.....



You've done an excellent job at expressing some universal thoughts and feelings which I have and I've read other MSers express.

The point of smiling, laughing, reassuring those around us is powerful. You are certainly not alone in that.

I hardly remember myself anymore. I have a face which cannot hide thoughts or emotions, but I wear a 'mask' much of the time.

Get angry. Sob. Scream (but try not to scare anybody nearby). Better to express it than to bottle it.

A quote which comes to mind: "Better out than in I always say" - Shrek.

The first year after finally getting the definite MS diagnosis was the hardest for me. And that process was not a steady decrescendo, as there were many rises and falls in the volume of it all.

Thank you for sharing this with us.

Tracys Ramblings said...

Ben- Ok, yes, I have laughed at your blog. I apologize for not making the sentence say "I can't remember the last time I laughed EXCEPT for when I was reading Ben's blog."
And I completley understand about your kids. The hard thing for me is that my two oldest knew me as the person I was before. They're probably wondering where the hell she went too.
I really appreciated that you took the time to write your comment. It honestly made me feel better. Even if you were just bored at work. :)

Lisa- Thank you. I wasn't sure if I wanted to write this post or not. I mean, I started this blog as my place to vent, get mad at, and talk about my MS and hope to meet other people in the same boat. But in another way, I guess I was worried about you all. I didn't want you all to think that I wasn't ok. See how it works?
And I've never heard a Shrek quote used so perfectly.

Chrystal said...

Do you really want to go there and not laugh, I can bring out the best of you. I can stick out my tongue and touch my nose, I can tell everyone of you dirty deeds, or like just now make a fool out of myself. You need a girls from the past weekend, or day, or hour...we could make a bad thing turn really good.

Sammie said...

If it makes you feel any better, and I have my doubts that it will, but I find it amusing at times, my neurologist says the problems aren't actually "memory" problems exactly. It's more like a faulty processor...things go in but don't get processed and stored properly. Which explains well enough to me why I can remember exact details of something that happened ten years ago but not what I ate yesterday. It's in my memory it's just misplaced!

I suppose the moodiness I was better prepared for kind of, having always been a very moody person, but it is more frequent now that I go from one extreme to the other and before it was mostly very happy -> short-tempered outbursts and vice versa, not sad times. Regardless that the moods aren't my "worst" issue, I see how you could hate them so. It does bother me when I lose that "real me" that only shows up in short bursts now and then. I would have to say that part has gotten better to some extent in the few years since my diagnosis. No I don't always feel like I used to but I don't spend time wishing I'd just gotten some quick and fatal disease instead, that's something, right? :)

Taxingwoman said...

You have pretty much described my experience . I do get a sick laugh from the columnists at the Asia Times and at the Fail blog, because they are so sarcastic. Otherwise I don't seem to get jokes anymore. How many times at work everybody will laugh at something and I just sit there expressionless.
I have to make lists and have to read them over at least a couple of times before I go shopping. I get anxiety attacks in crowded stores, never use to.

Abby said...

I'm with you on all of this Tracy. The lack of real smiles, laughter. The feelings of just wanting to go to sleep but being angry about missing out on everything. And of course, telling everyone that all is okay, and it's not. Not at all.

pUNKrOCKfairy said...

I too blogged about loss and wondered if I would be bringing everybody else in the blogworld down. I feel like I'm always negative in my blogs if not always serious, and I have a little guilt about it until I remember, "They don't HAVE to read me!" I think it's your space to vent or bitch if you want to. And if I'm not in the mood for your bad days, I'll just skip down to your other hilarious antics.

Let 'er rip!

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