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There are so many things to sort out.


lydiacevedo

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Christmas day 2010, I celebrated the holiday with "the whole family" for the first time in more than a decade. I had been estranged from my parents and sister. This was a big family reunion that included my husband's parents and sister, my husband and kids, my sister and her husband, my step-brother and my parents. We had a great day, even though my sister had recently had surgery and was feeling the effects of her pain medications a little bit. I really started feeling close to my family again.

 

The next day, I ended up in hospital with a cluster of embolic strokes, affecting my left brain. Holy crow! How the heck did that happen!?

 

My family rallied around me. Mom and my sister were there every day, as well as my kids and husband. The probed doctors for the hows and whys and celebrated each and every little thing that got better with me. We laughed and we cried together. We told eacjother our deepest fears about what had happened. My mother was determined not to bury another one of her children. My sister was not going to lose me at 42. I was (and still am) terrified I will end up like my grandmother who suffered several strokes and heart attacks until she finally died.

 

They rejoiced when I went home and called daily at first, now a couple of times a week. We had family dinners with the whole family every weekend so that everyone could check my progress for the first month after the stroke.

 

I needed them and they were always there. Sometimes more than I wanted them to be there.

 

My mother is a retired lawyer. They used to call her "the Dragon Lady." My sister is lovingly referred to as "the steamroller." we all have a fair amount of an idea that we are better equipped to manage the lives of those whom we love better than they are. Sometimes they seemed a little overbearing. But I didn't have the strength to argue. My kids, however, did. That lead to a few cross words and some ruffled feathers. I couldn't believe I was the one trying to sooth everyone's egos and calm everyone back down. But where the kids were concerned, if I wasn't getting upset and fighting something, they weren't going to do it either. Things calmed down.

 

Seems like I'd have everything figured out and under control. Nope.

 

No one was seeing what was underneath. I wasn't letting anyone in, not even my husband or my kids. No one knew all the things I have been mourning, all the fears that still enter my dreams at night, all the frustrations, all the impatience with myself and everything else, all the stress that I have been quietly trying to carry around all by myself. I know, I'm asking for another stroke.

 

Let's see if I can arrange my thoughts well enough to get them all out, here.

 

1. I know things are not the same as they were with me before the stroke. Will they ever be the same?

No, not everything will be the same again. I can work on things, but at some point, they will plateau and I will have to learn to accept that. I don't want to,

but I don't have another choice.

2. The idea of being physically intimate with my husband scares the living daylights out of me. It scares him too. Will we ever be "back to normal?"

Yes, given time. Right now, we will just take things slowly and see how they go. No one has to "hit the home run" right away. We'll play teen-ager again

and round each of the bases. The important thing is that we still want to be intimate with eachother. We still like just being in each other's arms,

snuggling and watching tv at night.

3. Will I have another stroke? When will it happen?

Chances look pretty good that it will happen again. My diagnosis was Cerebral Artereosclerosis, brought on by complications of Systemic Lupus, combined

with complications of a Bicuspid Aortic valve. There is no cure for either condition, but they can be managed. No one knows when it will happen again and I

can't live my life looking for it.

4. What won't I be able to do any more?

a. Well, if my balance doesn't greatly improve, I won't be doing a whole lot of ballroom dancing or martial arts any more. That doesn't mean I can't or

shouldn't try to be active, it just means I need to start slowly - like with walking and see where I end up.

b. I may spend the rest of my life struggling to get the right words out and I may stutter when I get tired/nervous/upset/etc, but that too should become

less of an issue with time.

c. I may never be able to swallow as effectively as I once did, but since I have never had a gag reflex, I'm used to accidentally breathing and swallowing at

the same time. It's annoying, but nothing I can't handle.

d. Hopefully, reading will get better over time and my right eye will quit giving up on me, I'll learn to judge distances better again, and things that come

into my sight quickly will stop starteling me, or I'll at least learn to deal with it.

e. Since I've had central processing dysfunction for several years now, I already know how to cope with losing focus because of too many sounds I can't

understand. Not a big change there, I just get to that "stop the worl I need quiet" place sooner and more easily. I can manage.

5. Exhaustion. That seems to be something I can't shake, no matter how many hours of sleep I get a night.

6. Work- will I ever get back to full time?

Maybe not. But as long as I can get to 30 hours a week, I can keep my benefits and insurance, so that is the goal I am going to set for myself.

7. Homelife - when can I put the "Super Mom" or the "Super Wife" cape back on and single-handedly take on everyone else's problems again?

Realistically? Never. I need to learn when to let go and I need to understand that just because I am not in control of a particular situation, does

NOT mean that life is passing by around me or that I have stopped being a part of my life. That just might be the lesson all of the "Acevedo women"

need to learn, I just had life kick me in the head to make me learn it.

 

Well, all of this sounds great here, while I am emotionally on an even keel for the moment. But when things happen, like my daughter moves out, my husband feels the strain of caring for brain/spinal cord injury patients and then coming home to take care of me, or when I have to use the word that I tried so very hard to remove from my vocabulary, "no," I won't do what I have always done, rebel.

 

I know the fastest way to get me to do something is tell me I can't do it. I'm also not very good at patience....or tact...or diplomacy...or anything else that isn't things going exactly the way I think that they should go, when I think they should go. And I know I am my hardest critic.

 

Learning to let go of what used to be and accept who I am now/will be is not going to be an easy task for me. I know that.

 

Accepting that I have that task ahead has not been easy for me. Grief is something the women of my family do a little odd. We don't do the bargaining part, probably because we don't typically bargain in every day life. We hold on to anger and frustration and wear them like armor. Acceptance only comes when we finally realize that we have beaten ourselves bloody and dizzy banging against the truth of a situation. We don't accept as much as we surrender, which starts its own mini anger cycle until we can find the "loophole" that lets us trick ourselves into believing that we actually won and didn't ever actually give in. Ok, it'm not the healthiest way to handle things. We are who we are. I'm trying to change because I don't see where I have another option. I'm tired of being angry, hurt and defeated.

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