http://www.one.org Dixie Peach: It Gets Better

Cooler than the other side of the pillow.

Monday, August 06, 2007

It Gets Better

I dread getting B outside. Absolutely dread it. Dread it to the point of hating it.

Every para and quadriplegic is different in terms of their injuries and how it effects their physiology. Some paras and quads are such that they can't sit up for long periods of time, some have circulatory systems that aren't as affected by the weather, some have more mobility than others. B's physiology is such that he has very low tolerance for cold weather and that means we very, very rarely venture outdoors with him once the weather is below 6o°F. His physiology is also such that if it's too hot we can't go outdoors because he can't sweat and therefore his body can't cool itself like a normally healthy person can. This all means that when it's warm and sunny and pleasant we try to get him outside. Our windows of opportunity are small and every one we don't take advantage of is lost forever.

And yet I dread it. Bathing him alone takes me well over an hour of non-stop effort and afterwards there's no break because I've got to get him prepared to get outside. Dressing him is guaranteed to leave me a sweaty, annoyed mess. Pulling on his tight fitting anti-thrombosis stockings is the easy part - it's wrestling on his underpants and his trousers that I despise. All the tugging, yanking and rolling just to get him into pants is enough to make me cancel the whole trip. Once he's dressed and I have his shoes on I need to then move furniture to get his electric wheelchair into the living room. Once things have been rolled and dragged out of the way and I have the wheelchair next to his bed it's time for me and another person to lift his 1.90 meter, 75 kilos of passive weight body into the chair without hurting him, his bones - which after 24 years of paralysis are as brittle as kindling wood, or me.

Once it's accomplished I'm done in. My hair is generally drenched in sweat, any trace of makeup is long gone and all I want to do is pin a note to him saying "Dear Bartender, Please give him a beer and a straw. Money is in his shirt pocket. Send him home in one hour.". I have no interest any longer in going out and only wish to loll in front of the fan and have a nap.

But I don't. I screw a smile on my face and don't let on that I don't want to go out. It's his opportunity to get some fresh air and a change of scenery and a sense of freedom and independence and I can't stand in the way of that.

B gets out of the apartment, down the elevator and outside the front door and it's as if none of the rest of it even happened. The frustration and irritation and endless sweating is forgotten and we start down the street to see what we can see and generally end up parked outside of our favorite cafe with the owner coming out to greet us like we were celebrities.

Yesterday was such a day. By the time I got B in his chair I felt like death on a soda cracker and looked like 40 miles of bad road but I screwed on that smile and by the time we got down to the market square all the effort it took to get us that far was forgotten.

Just as the chimes in the city hall's clock tower chimed the tune it plays when five o' clock rolls around we got seated at our favorite cafe, our regular first round of drinks already on their way out to us. My MIL was there with her gentleman friend and B's dad's cousin was there with her husband and we all had the best time. The air was perfect - just the right temperature with little humidity - the food was delicious, the service fantastic. The market square was peaceful and even though we were in the middle of the city, it was quiet and calm.

After supper was finished and we were having our final drinks I leaned my head over on B's arm, perfectly content to be where I was. I had dreaded the whole thing but now that the hard part was over I was dreading to break up the wonderful feeling of being in a wonderful setting with my husband to head back home.

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15Comments:

Blogger J said...

You are one heck of a woman!

I love your blog because you're honest. In a situation like yours, I know I wouldn't be nearly as strong as you.

I'm glad that you and B found each other.

11:45 PM  
Blogger Rositta said...

You have my admiration, I would not be able to do it, not for love or money. I just don't have the strength in me, I know how hard caregiving is having just gone through 3 years with my Mom. Even though it was hard, it was nothing like your situation, but I guess I would go through it all over again, if I could have her back. B is a lucky man...ciao:)

12:30 AM  
Anonymous It's Me... Maven said...

What an open and honest account of what a simple thing, an outing, involves. I can see where you'd want to just stay home and nap. But it's all worth it, even for that one perfect moment, your head on his arm.

12:31 AM  
Blogger BetteJo said...

For all the effort it takes to get your husband outside and about, your description of your evening sounds just lovely!

I suppose even the hardest things have their payoffs. Still - I don't know that I would be that strong.

1:09 AM  
Blogger Marsha said...

I am so glad that I have had this opportunity to have a peek into your world. I would never have even imagined what the life of a caregiver is like if not for you. I am so glad you got that moment with your head on his shoulder, how lovely.

3:58 AM  
Blogger Carol said...

I love your descriptions of your life with B. Your very strong love shines through every detail, even when you're exhausted and frustrated. I have such admiration for you!

Carol

4:37 AM  
Blogger Hilda said...

Wonderful post from a wonderful woman. I'm glad B got his evening out, he certainly deserves it.

Be happy.

4:57 AM  
Anonymous pkb said...

you are a perfectly precious person, dix.

5:30 AM  
Blogger Miz said...

You are a strong woman Dixie. I feel for B too, he sees the effort involved, what you go through. If it was me I would get to hate putting you through this to go out and say don't bother. It's good that you make him feel that despite it all, just being there, in that moment, is worth it all for both of you.

5:33 AM  
Blogger Sheila said...

Of course, you know I understand all of this completely. (Tom's ideal outside temp is the same as B's!)

We're always thankful for the beautiful days also.

I wait to get ready until after Tom's up, therefore I can change into unsweaty clothing and fix my hair again.

5:45 AM  
Blogger JEANNETTE said...

After "meeting" you on Ravelry, I stopped by to check out your blog. I think you and B have an amazing love story. It sounds like it's hard, but it also sounds like you found your soulmate!

12:02 PM  
Blogger Dixie said...

If soulmate's exist, I certainly found mine. He's worth it all.

12:19 AM  
Blogger The Big Finn said...

I'll never complain about having to take out the garbage again.

10:42 PM  
Blogger Dixie said...

Heh! Oh heck, even I whine about taking out the garbage! I hate it!

10:59 PM  
Blogger christina said...

Aww, Dixie, you're such a trooper! And it's totally OK to admit to hating something and then going ahead and doing it anyway. In this case it's all worth it. Soulmates definitely exist. So glad you found yours. :-)

11:58 PM  

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