Six months and counting…

It’s been six months since my sister died.

I can’t quite believe it.  Time moves differently when it concerns the death of someone you love, because you don’t want it to move at all – dragging your feet as it forces you along.

I wasn’t sure what to write today but wanted to write anyway, so I went back to The Five Stages of Grief website to see if that sparked anything.  At first, it didn’t.  I’ve already written about denial and the other stages just don’t seem to be anything that I’ve gone through in the past months.  Plus, the descriptions of the stages seem incredibly corny – annoyingly so – it’s worded as if talking to a baby.  So, instead of reading those very thoroughly, I just focused on the words:

Denial.  Anger.  Bargaining.  Depression.  Acceptance.

And realized, I’ve dealt with all of them.  Not in the last six months but in the last seventeen years.  Ever since she was diagnosed with Lupus, I’ve stumbled upon some form of each of these “stages.”  Any unwanted drastic change in someone’s life is bound to cause any one or all of these.  In my case, it was this damn disease.  Did I go through the stages in order?  Eh…not really.  Do I think the corny definitions are true? Maybe superficially, but we all grieve differently – so while I can define the stages for me – I’m guessing they weren’t  the same for you.

Where does that put me now, then?  I’m not sure.

I push it away.  I avoid it.  I hold my breath til the moment passes.  I ignore it at all cost.   Except for days like today where thinking about her is entirely unavoidable.  Where I can’t help but look at the million of pictures of her on my computer or listen to a voicemail that I, luckily, never deleted.  And it’s still all there…the mixed emotions, the guilt, the grief.  I found it oddly comforting.  To cry.  To feel it all, even if I only let myself for a few moments. I imagine it will be like an old friend after a while.  One that comes to visit unexpectedly. One that I can visit at a moment’s notice.  Like today.  When I can’t believe she’s been gone so long.

That awkward moment…

…when you inform someone your sister is dead.

I’ve occasionally wondered how I’m supposed to talk about my sister…  What happens when I meet a new person and they ask about my family?  Should I speak as if I only have a brother…or should I talk as if my sister is still alive?  Thus, avoiding all awkwardness or should I just be honest?  Live brother.  Dead sister.  Deal with it.  I have to.

I don’t know that I could ever act as if I have just one sibling…that seems weird and is a lie.  I’m not good at lying – my facial expressions are a direct link to whatever thought is occurring in my brain at the moment it is occurring.  No filters here.  My brain/face glitch when I lie.  So, I can’t act as if she didn’t exist.  And, I don’t want to.  At the same time, culturally, it doesn’t feel like I’m supposed to talk about her death, either.  Don’t want to ruin the mood…of whatever more positive mood is going on…  Gotta be normal.  (I guess this would be a good future blog topic, but is not the point of this one.)

Today, I had my first experience with informing someone that she is dead.  Specifically, I told my new dentist (as if dentist experiences weren’t already horrible enough!).

Convo (going over health history):

Dentist: Any history of autoimmune disease?  Fibromyalgia?  Lupus?
Me: My sister had Lupus.
Dentist: Had?  Lupus isn’t a past tense disease.  She has Lupus.
Me: Not if she’s dead.
Dentist: Well, I put my foot in my mouth there.

Then, of course, the dentist apologized for my sister’s untimely death and asked a few more questions.  But, in a way, it was kind of funny…awkward funny.  Maybe it was even cathartic just to talk about it out loud for a moment…because I don’t talk about it that often.  I think about it constantly, but rarely am I going on and on about my dead sister (except here in the blog, of course – ha!).  Again, cuz that’s just not the cultural norm.  And, people don’t bring her up to me, because they don’t want to chance upsetting me.  Fully understandable…because it’s quite possible I would get upset.  But not bad upset.  There’s not a “bad” upset in this case.  I’m “good” upset over her.  Every heart ache, every tear expresses my love for her.  That’s fine by me.

Though, I’m guessing the dentist will avoid correcting past tense usage from now on!


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.