Poem: You Look Cute

My sister really struggled with her physical appearance.  When she was healthy, she was a gorgeous little thing (maybe I’m biased but she was very pretty).  Lupus took its toll on her, but when she received a kidney transplant her senior year of high school, she seemed to bounce back overnight.  She became popular within two seconds and was living it up.  She was just so darn cute, dressed in Abercrombie and Hollister (all very very cool back in the day).

Then, she lost the kidney.

Physically, she slowly deteriorated.  She started to look sick…this got worse and worse as more health problems manifested themselves over time, and she had a really tough time accepting that or seeing past it.  She would still buy all these cute outfits that no longer fit her body…  They just waited, hanging in her closet, for the day she would be healthy again.  These past two years, though, she had really given up.  She couldn’t see past the sick to the beautiful girl that she still was.  So, when I’d go home to visit, I would make her get out of her PJs and put on make-up to go out.  I tried to treat her like a normal sister…meaning if my mom helped do her hair and it made her look like a five-year old…I said it looked stupid and fixed it.  I wanted her so badly to feel pretty, again, to feel special…to feel normal, even if for five seconds.  It was hard, though.  Sometimes, I wished I could make myself look worse…so that she would feel better.  I think towards the end, she was starting to see herself differently.  At Christmas, she asked me to help her with her make-up (usually, I had to drag her into the bathroom).  I got hopeful that she was starting to see through the sick…

That’s a long-winded explanation for this short poem…

You Look Cute

Lupus Poopus

My sister had Lupus.  That is the disease/sickness that she was living with from the age of nine to almost 27.  I’m not sure why I didn’t come out and just say that from the start.  It wasn’t really a secret.  It just wasn’t the intended focus of this page.  But, I’m realizing how big a role this damn disease played in my sister’s life – in my whole family’s life.  It affected us all…  We were a seemingly “typical” family…and then, one day, we weren’t.  Lupus hit my sister pretty hard right from the beginning.  It was very unusual for a nine year-old to be diagnosed with it…and for the cherry on the top – she had the worst version…the version that attacks everything.  (Lupus is an auto-immune disease where your immune system starts attacking your own organs/tissue.  Some types only attack specific parts – my sister had the type that wages a full out war on everything.  Brain, kidneys, blood, joints, skin…).

I’m not sure if treatment has changed, but my sister had to start taking steroids and get chemotherapy.  My mom says that had she known what she does now (ain’t hindsight a bitch?) there is no way in hell she would have let them give my sister chemo and maybe not even steroids – or at least not as much.  I’m not sure if they could have been by-passed and honestly, I have no flipping clue why she went on chemo…  I just know what this all did to her.  She started off fourth grade as rambunctious as ever but at the end, she was a puffy, thin-haired, exhausted little girl.  Was it the drugs and their side-effects…was it the Lupus?  You start to lose track of what’s causing what…

And that was just the beginning.

In the years since then, here are some of the highlights: brain swelling and surgery to get a brain shunt, loss of both of her kidneys, numerous surgeries to get dialysis tubes put in, kidney transplant, losing the new kidney, two open heart surgeries, two hip replacements, infections x 1000, breathing difficulties, constant joint pain, side effects from pain meds, addiction to pain meds, and oh yeah – that last thing…death.

This little nine-year old had all that to look forward to…and, yes, she was the one it was happening to…but it takes quite a toll on the entire family.  My brother and I grew up in that world – of hospitals, of not only missing our sister but missing our mom, too.  The hospital in our hometown was sub-par, so when she would get sick, they were both gone.  And, let’s just be honest here, when you have a sick kid in the family – that kid gets a lot of the attention.  AND, OF COURSE THEY SHOULD, BUT there’s no way around that this affects the other kids.  I was eleven.  I did not have the mental capacity to really be understanding.  And once I hit puberty and got all of my teenage angst, I became downright resentful.  And, then, my sister got resentful!  She was on her way to be a rock star…no question this girl was gonna be Miss Popular…and then, got smacked down with this disease and had to watch me get to do all of the things that she so desperately wanted.  We were already very different, but the crack became a gulf between us as we became teenagers.  And, it just took me a really long time, to try to bridge this gap.  I finally figured out how to be an older sister at the age of 29 – to see past my own issues, my own hang-ups…to see past her facade of hate and jealousy…to where I finally understood it.  I got it.  It’s so obvious…and yet, it took me a while to get there.  To figure out what she needed.  To figure out how to deliver it.  It just took time.  The one thing she didn’t have.

Oh, guilt, there you are, again…that was a nice ten-minute reprieve…before I circled around back to you.

There are a lot of times when I hate myself and you might hate me, too.  …from the outside, it seems so obvious – how to feel and act when you have a sick family member…but when you’re in it – it’s not like that.  It’s complicated – you’re dealing with people.  Flawed human beings and now you’ve added in this extra unpredictable variable.  And, so maybe exploring some of this – the effect that Lupus had on my family’s life – helps me (and you) understand the turmoil that is swirling around inside my head, as I deal with the loss of my sister.

And, maybe, there is someone that this will help.  Someone who still has time.

Show and Tell

ari on horse 2b‘Show and Tell’ time!  Just like the good ol’ days.  Here’s a picture of my sister.  I think she was two.  If you’re unclear of the danger of the situation,  that pony is a good foot off the ground…and it’s not your typical rocking horse.  It’s held in the air by rods sticking out that are attached to springs running horizontally, that then attach to the outside pole structure.  And, THAT is how my sister liked to ride it.  AT TWO.  Good grief.  If there is one picture that sums the child up – it’s this.  Precariously balancing on a spring-loaded pony.  She’s insane.  She pushed the limits – that’s for sure.  My mom says that she’d fall off…and get right back up and do this over and over.  …thinking of my mom…ha…good parenting there.  Letting your two-year-old perform circus acts whilst taking pictures.  LOL.

I miss my sister so much today.  It’s one of those days where there’s this tight pressure on my chest…it’s not quite suffocating, it’s just this heavy feeling, as if gravity has shifted so that, even though I’m upright, it can still press down.  And down down down it presses.

Recently, I’ve been skirting a lot of feelings…the top one being: GUILT.  In my situation, there’s a lot to feel guilty about and it’s exacerbated by the fact that she had an illness.  I always knew she was sick, knew that there was a high probability she wouldn’t make it another five years.  Why-oh-why didn’t this change my actions more?  I. Don’t. Know.  I have some valid excuses.  But, not enough to make me feel better.  My mom points out that in the last two years – I did go home more often and I did try to do more things with her.  Somehow, this doesn’t help, because all I can see is the other more, the more that I should have done.

And, then…there’s this other guilt…and when I acknowledge this other guilt…my eyes instantly water and I………

….don’t want to acknowledge this other guilt right now.  Because my eyes just instantly watered and my throat tightened up and the pressure on my chest just got heavier…….

So, I will press my fingers to my forehead…and massage this all away…

And deal with it another day.

(Note the rhyme…pretty impressive, yes?)

(Yay for distracting myself from myself!)

(…is this denial?  I don’t know…)