Saturday, February 15, 2014

Shout Me Out

     Anyway. Now that I've gotten that out of my system, let's get back to something a bit more relevant to what this blog is supposed to be about. Speaking of the blog (like that not-at-all-subtle segue?), one of the main reasons I started it was because I couldn't find any sort of support online or in person for people like me. Meaning, there were multiple support groups for my husband, the one who was born with Marfan's Syndrome, but very few for me, the one who was not, but lives with it just the same. And honestly, of the support groups we did find for him, none of them proved to be what he needed because it's apparently some unspoken rule that the ugly sides of chronic, debilitating disorders are not for talking about among polite company. I was unaware.

     I know how harsh that summation sounds and I don't mean it in a harsh manner, not at all. It's really meant to be a statement of opinion, nothing more. Sometimes, though, I just can't find a way to turn what I hear in my head into words and this is one of those times. It's a frustration for me, both the dissatisfaction with what's available and my own inability to properly articulate what it is I/we need. Everybody's looking for something different, something that works for them. If that something fits within the confines of a traditional, emphasize-the-positive group, more power to you. Comfort's an elusive creature and if you can find it, hold on like hell, as best you can for as long as you can. I'm simply saying that those types of set ups don't work for me and I'm not the only one.

     And actually, I don't really think it's even the tone of such groups that clashes with my personality to the point of genuine discomfort - I think it may be the idea of a group, period. I'm not really a group-oriented person by nature, though I'm not what anyone would consider a loner, either. Let's put it this way - I would much rather be left alone to read my latest literary acquisition that spend an evening at a party where I only know the host and a handful of others. I'm either a one-on-one kind of girl, or a lecture-hall attendee, because I have no middle ground when it comes to my personal preferences.

     I think that's why this outlet works so well for me right now, because I get both types of interactions with one medium. Here I sit at my sunny little computer desk, with Queens of the Stone Age raging in my ears, talking to myself and a hundred others all at once. It works as an outlet for me, a forum for others who know this story to talk to me and performs a myriad of other functions that I just haven't thought of yet. Sometimes people notice, as when one of the bigger Marfan organizations somehow tripped over this blog and re-tweeted the link to one of my posts. Such a tiny thing, especially when taken in the context of the billions of tweets that go out daily, but that doesn't lessen its significance to me. As I've so often said before, if it's just one person that gets something, anything, from what I'm rambling on about, then it's worth it.

       I still hold out hope that somewhere out there are enough like-minded individuals that we'll be able to form a kind of network, one that we can rely on to share the load that I personally am so reluctant to share. I am, at the moment, still so reluctant to share the weight of things related to my husband's disorder because I never know how to get the conversation started and somehow seem to stumble along gracelessly if I do manage to open that door. I hate it, intensely, because words are the one thing that I've always found comfort in, something that never fails.

      More and more, though, others are making the first move and opening the door for me, which shouldn't make it easier, but does. Emails and comments and re-tweets and whatever other form of communication; it all matters. 


Jan, BC, Canada said...

Wow! You are replaying my life!

I stumbled on to your blog through about a dozen clicks and started to read and read and read...

My husband also has Marfan's and is in the process of the disorder seemingly taking over his life. At almost 50 years old he has gone through more in the past 6 years than his entire previous years combined.

To finally hear someone who is the other half of someone affected but this disorder brings comfort to the fact that I am not the only one. That other wives, husbands and partners will sit by their hospital bedside just so they aren't alone, attend multiple doctors and specialists to ensure that they are receiving the best possible care, tell them that they are beautiful when they can't see it in themselves.

There are days when I don't want to get out of bed and deal with the MFS issue of the day. Their are also times where I can't seem to close my eyes to sleep in case it will be the last time I see the man that is my entire world. But I do. One foot in front of the other for as long as god has given us.

Thank you for your words. They are read and appreciated.

carlo b said...

You know, this post gave me the occasion to think at what really what concerns to me, related to Marfan issue. Yes, I also felt that feeling, when u don’t feel comfortable in talking about “the ugly sides of chronic, debilitating disorders” as u called em.
And I feel like I am divided in 2. A part of me thinks I can simply have an “easy life”, like any other guy. Ok, I can’t do sports as I wish, I can’t spend a Saturday night drinking and smoking for hours, but still I can do the most of the things of a common life, I am tall and thin but not that much after all, I take my pills but I’m not so weak. I have a job and lived on my own for years. I got operated more than 1 year ago but currently I don’t need any help. Then I may say I don’t care of Marfan troubles and don’t want to talk about. I’d be sincere.
Still something hurts. In my mind, not in my body. Something remains of non expressed, not clear to me. I feel bad because I have Marfan syndrome. Because I got it from my father and because I could give it to a son of mine. As a genetic disease It seems more do a damnation that to an illness. I feel different.
I want to be like any other and nowadays things can be like that, because medicine can help and save us. And still I can’t. Not completely at least.
That’s why I came to ur blog and, from time to time, when the darkness start diggin into me and I fail in ignoring it, I start to look on the net for someone to talk about Marfan life.
Ur posts are deep and I like the way u write, even though ur English it’s not that easy to a kind of a beginner like me.
I’d like to stay in contact, even by email if possible 

joey said...

I hear your is all so complicated. My son is 28 yo and six months post surgury for a dissection. Too afraid to follow up with his doctors...say what will be will be. Hard to know where to turn as a parent. I am sixty and have marfan syndrome a lot of aches and pains ..eye surgury so successful at 32 yo otherwise coping pretty well. Taking the beta blockers daily.

carlo b said...

I apologize in advance if i am too direct, i know is not easy to be concerned. I always wanted to talk about this issue: having the syndrome and transmit it to ur son or daughter.
My father died of dissection when i was 1. My mum didn't know he had marfan b4. U can imagine the mess... I often hated him for that, for not being here, when i was sick, to tell anything. He was the source of my troubles. I wonder if he fully knew, it was 76 in a countryside zone.
But i mostly feel like i don't want to do like him...
But can someone be present, be responsabensobale, be happy, be alive if is afraid of himself?
I don't think so

Kris K said...

Carlo, please don't worry about being, as you say, "too direct." Such a thing really doesn't exist here, not for me anyway. This blog is the one thing I have to try and find others like me and get them to talk, honestly.

I have absolutely no answers for you, but I know my husband has struggled with some of the same feelings and the way you describe feeling about your father? Yeah, that's pretty much why we've decided against biological children. There's a whole big post coming about that, so maybe wanna check that out.