Monday, August 06, 2007

cat got your blog?

I know some of you have been wondering; thanks so much for your concern. I stole the title of this post from an email I got from highcon. I don't think It's ever been this long between posts before, and believe me when I say it's not for a lack of trying.

It's just that every post I sit down to write ends up sounding like a big fat whinefest about all the crap that is happening to my brother and how it makes me sad. I feel too guilty to try and cover it up with something funny, because it's one of those things that will never go away. Which makes me sadder. And while I can acknowledge that complaining is certainly not something I shy away from, I do understand that it doesn't help anybody. Plus, I've come to intimately understand that no, life isn't fair. I get it. But that doesn't mean it doesn't really freaking suck. So I'm going to go ahead and bitch about it.

Everything about this past surgery is technically less bad than the other nine or so open-heart surgeries he's had before. Except that everything about this past surgery is also much worse than the nine or so open-heart surgeries he's had before. Let me explain, briefly:

1) Thankfully, this past surgery did not require that they saw through his breastbone, so technically it was not open-heart surgery, and the recovery is supposed to be easier and shorter. However, little kids tend to bounce back from physical trauma a lot more quickly than adults. Youthful as he is at almost 25, my brother's recovery isn't as springy as it once was and surgeries over previous scar tissue tend to take longer to heal, so it ends up being the same seemingly neverending amount of time to get back to life as normal.

2) He can't plan his life. This was supposed to be a pretty straightforward antibiotic annihilation (because that wound around his pacemaker had been open and covered with gauze for more than a year, they went in, took out the pacemaker, flushed the spot where it had been with the most powerful antibiotics, put in a new pacemaker generator, closed him up and put him on IV super-antibiotics for two weeks.) Now it's looking like healing may take longer, which will delay going back to school, which will drag out his already-six-year attempt to graduate even further.

3) He's tethered to an IV and was determined to still have a little fun, but had to turn down really-hard-t0-get baseball tickets because he can't seem to bring down his temperature or stop throwing up everything he puts in this stomach. Plus he's allergic to the adhesive tape they use to secure his IV line; the itching has been bad, but everyone telling him "just don't scratch it" is much worse--it's a hell of a lot easier said than done.

4) We're blessed that, save for the little "heart issue," my brother is pretty normal. He gets tired more quickly than others and has a complicated pill regimen, but he's your average college student who can do everything for himself. If you didn't know about his condition, he'd try to make sure it stayed that way. So because he's used to having a normal life, whenever these things come up and he's restricted from nearly everything, it sucks just a little bit more than if he had to incorporate bedrest and no fun into his daily life.

5) I know I'm biased, but he's really a very good kid. He's smart, responsible, caring, ambitious and has a good head on his shoulders. I hate to be nasty, but when I see a perfectly healthy kid his age fucking up his life beyond belief and throwing away his good health on stupid destructive shit, I just want to reach into his chest, rip out his heart and give it to somebody who will take care of it.

6) I get that healthcare professionals see this stuff all the time and so it's just a job to them. I worked in an emergency room and understand that people moaning over a nosebleed should see what just came off the ambulance and shut the hell up. Yes, he can handle the pain/hassle/uncomfort, and yes, he has been through a lot of this stuff before, but it doesn't mean that it doesn't suck any less or that he can be treated like a car in a repair shop instead of a person with feelings. (Fortunately, for the most part caregivers have been kind and generous with their time and effort.) He might be one of fifty heart patients, but he's the only brother I'm going to get.

7) They allowed him to come home and have home healthcare for the first time. However, it's the same as if he were still in hospital--he can't sleep because of pain or itching. So neither does my mom, because she's scratching his arms so he doesn't rip out the IV and massaging all the places it hurts all day and all night. That's the way it has always been, but they're both very very tired of it.

I want to emphasize that I am so lucky and grateful that we've had my brother in our lives for so long, and that I know that so many people in this world have it much, much worse. But it's really hard to come to grips with the fact that no amount of money, time or technology will make all this go away for him. He has been such a good sport and never once has used his situation to get pity or out of responsibility. So many others can't say the same. I don't even know if I would be able to say the same. I am immensely proud of him.

The part that gets me down--so much so that I have a hard time enjoying myself and then feel guilty because it really isn't about me--is that this time around I can see him getting weary. That above all else is the worst, because what has best kept him alive all these years are good vibes and his own amazing ability to withstand and fight. If it were me, I probably wouldn't have made it beyond infancy.

In the middle of yet another sleepless night a few nights ago, I was sleeping on the floor near him and my mom was on the couch pressing his throbbing forehead when he said in a small, quiet voice, "Mom, what did I do to deserve this?" Nobody has any kind of answer for a question like that.

If love could cure all, my brother would be a triathlete right now. But life just isn't that fair.


Anonymous said...

I bet your brother would be good with kids in the same situation. If any good comes from his experiences, it will be that he can give some hope to others facing the same.

Syar said...

I'm getting teary. I'm so sorry for all that your brother and your family have to go through. It sounds like a huge ride of constant worry and pain. But obviously you and your brother are cut from the same cloth, and you too are a feisty chica with a great brother. He's gone through so much so I dare anyone not to be amazed that he's pushed through it all (Nine open heart surgeries? I mean, wow) and it's sad that he's gotten weary and tired of this ride but I can only hope that drive he has, that you've told us all about will never flicker out. Just like yours.

Best wishes to him, and to you.

Sphincter said...

I'm sorry that your brother is struggling, but I'm glad that he's got a great family to support him.

highcontrast said...

when you talk to your bro, the fact that he deals with something so difficult doesn't even cross your mind. always seems cool as a cucumber and at ease with the world. much cooler and at ease than I am on my best days!
so did you get some jamba??

Alexandra said...

number 5 is so right on- so people just dont appreciate what they have

Nadia said...

Your brother is awesome. As are you.

jazz said...

i wish i could say i knew things were going to get easier...but i don't...and i cant.

i think you're right, the best tactic so far is to be grateful for what you've got. you're a better person because your brother is in your life.

also, who is highcon to criticize you for not posting? bitch hasn't updated his blog in months!

cadiz12 said...

my brother went to a kids' heart camp in louisiana all through his teens and was a counselor for several years. he is excellent with children in general and it made such a difference even for him to be around other people his age who were in the same situation. (more comfortable swimming when everybody has surgery scars, etc.) in fact, that's where he met his girlfriend. the campers/counselors are all still pretty tight, but because they're all over the country, often they don't get in touch until they lose somebody.

we got him a sonic slushy thing last night and he liked it, but unfortunately didn't keep it down for very long. he went to the cardiologist yesterday and they can't figure out what's wrong with him; it may be the humidity, which can make for more difficult recovery post-surgery. they prescribed some antibiotic pills and he seems to be keeping the temperature down, so maybe that's a good sign.

thank you everyone. i really appreciate all the good thoughts and vibes. it was amazing how much better i felt just to write how i was feeling. unloading that kind of burden makes it easier. thanks for listening.

Lia said...

It's not whiny to vent when you have something real to talk about. Your brother is going through a lot, and you as his family are going through it with him. We're happy to listen.

There just isn't an answer to the question of "why?" There are lots of responses, but no real answer.

Best wishes for your brother's recovery from this surgery.

Jon said...

Well, if I've learned anything about your brother from what you've told us, it's that having the Cubbies in contention right now, and Football season right around the corner are exactly the kinds of things he needs to help him along in his recovery. I hope their success on the field is surpassed only by his getting better. As a fellow sports fan, I know those things matter :)

jinius said...

i think you're an amazing sister. my thoughts are with you and your brother.

Cissy Strutt said...

Thanks for such an open, heartfelt post.

Demosthenes said...

Re: Number five. Wow. And yes.

I'm not qualified enough as a human being to give any kind of advice here, so I will simply say that you're both in my thoughts and if there was ever a person who could make such an unfair situation better, it's you. And from the sound of it, you are.

angelciela07 said...

My thoughts and best wishes are with you and your family. Someone once told me that the crap in life happens to good people, as they are the ones who can deal with it and survive.

Becky said...

**sending healing vibes in your brother's direction**

also, i feel sorta sheepish reading this, because i immediately identified with the person who uses health issues as an excuse. because i suck like that.

Radioactive Jam said...

It's beyond cool that you and your family care so much, and you *know* that makes a difference. Doesn't help with the understanding, though.

Nothing ever seems to crack that rock.

All you can do is all you've been doing: hold on tight.

Teej said...

I can't imagine how hard this must be for your brother and you and your family. Hang in there, and don't hesitate to post about his progress out of fear that you're going to sound whiny. You don't.

omar said...

Not only do I think this post ISN'T whiny, I think it IS pretty brave to post something that is (as Cissy said) so heartfelt and open.

Librarian Girl said...

Totally not whiny at all. Your compassion and love for your brother are beautiful.

Hugs to you, my dear.

willowtree said...

Please hang in there. Many blessings to you, your brother and your parents.