Fifty Shades of Guilt


sis and mom bw2I went back to my hometown a few weeks ago for a friend’s birthday and stayed at my mom’s fancy schmancy new condo.  The second night there, I got home kind of late, got all ready, and put myself to bed as us adults do.  Right as I was about to drift away to dreamland, I hear my mom come home (she seems to have more of a life than I do). About ten minutes later, I hear her clear out sobbing in the kitchen.  I mean body-heaving, gut-wrenching sounds are traveling through these obviously thin walls right into the spare bedroom.  She might as well have been crying in the corner.

And, I freak.

A normal human being would have immediately gotten out of bed to go console their mother.  I have long given up any claim of being normal.  I can however claim at least partial forgiveness, because my mom used to be the family rock.  She was the frickin’ “Great Stone Face” of our time – the woman could be in an argument with my father, wouldn’t have a clue. She could be making life/death decisions about my sister – you’d never have known.  The woman was a private fortress of emotional solitude.  I didn’t even hear my parents argue until right before they got a divorce (I was twenty).  Ever-so-slowly after that, though, my mom began to show her emotions little by little.  But, to hear her all out breaking down?

Like I said, I freaked.

After about ten minutes, I convinced myself that I should get up and go talk to her, as much as I may dread it.  Because, along with not being normal, I’m also super awkward.  I know I’m bound to not do the right thing…piece of evidence numero uno…I walk into the kitchen and say: Hey.  Soooooooo…sounds like you may be a little upset?  …in a tentative yet joking voice.  Luckily, the woman has known me for some time and she does look up, smile, and say: I didn’t think you could hear me.

We talk for over an hour – really I just lean against a kitchen cabinet and listen while she sits on a step stool in the corner and tells me about the 5,233,489 ways that she feels guilty.  Eskimo, snow. My mom, guilt.

(1) She feels guilty when she’s not sad.  She hasn’t been sad for a while, she said.  But, not being sad, makes her sad.  Feeling “okay” for a couple of weeks, makes her feel horrible.  And that night, she walked through the door and just was overwhelmed with guilt and then, sadness that her baby was gone.  That her sick kid who used to always be on the couch in the evenings wasn’t home when she walked through the door.  That she now comes home to an empty house.

(2) She feels guilty because for the last year of my sister’s life, my sister must have felt so devastatingly, unimaginably alone.  My mom was tired.  She was understandably tired of sacrificing her life to stay home and be best buddies with my sister, so she had started going out on the weekends to do normal life things.  I think it would have probably been different if my sister hadn’t been so damn difficult, but my sister was damn difficult.  And not only that, but my sister had been making bad choices…choices that don’t lead to the hope of a healthier life but toward a quicker death.  That’s not easy to watch… But in hindsight, it’s hard not to hate yourself for every moment you didn’t spend with her.

(3) She feels guilty for pushing my dad to be involved more with the doctor/medical side of my sister’s life in the last few years.  My mom had a job…my dad didn’t for some time.  So, my mom thought it made sense for my dad to go to the appointments, so she wouldn’t have to take off work.  …but my dad didn’t know the nitty-gritty of that world so my mom thinks that some crucial decisions were not made correctly……

(4) And on the flip side, my mom feels guilty for a bunch of decisions that she did make.  She even questioned whether she made the correct first choice…I guess there was a moment in the very beginning of all of the hospital nonsense when my mom asked the doctors to save my sister, instead of letting her go. My mom wonders if that was selfish….would it have been better to have let her go right then at the beginning than to have held on to her and watch her suffer for so many years?  My mom told a rather heartbreaking story of how she came to the realization that my sister really only lived for her.  That my sister only pushed through some of what she did because my mom asked her to…..

So, I stood there in the kitchen, leaning against the cabinet, feeling squirmy because on some level, I didn’t want to hear this.  Like mother, like daughter.  I have built my fortress of emotional solitude and leaving it, let alone going into someone else’s is well…kind of terrifying.  My mom just kept crying and telling me…telling me all of this and so much more. And, I understand in my own way.  I feel guilty, too…about similar things, about different things, but my mom’s guilt is unfathomable.  It is infinite and ever-expanding.  It is the mother effin’ universe of guilt.

That’s the last time I saw my mom…until tomorrow.  I invited her to visit for Mother’s Day, so she’s driving up after she gets off work for some quality mother/daughter time.  And as great as it is, as much fun as we’ll hopefully have, I know it’ll be a little painful.  Because, I’ll inevitably think about how I used to fight for time alone with my mom…used to ask and push for us to do things without my sister.  I’ll think about the times, that I now regret, when I got my way…when my sister stayed home…

…and I’ll feel guilty.

Memorials…a form of self-torture?

My cousin just got a tattoo of my sister’s name on her shoulder.


My sister’s name surrounded by stars, covering her entire shoulder.



Not that I didn’t think of getting a tattoo that represented my sister… I did.  But, I then opted for a bracelet that held a tiny bit of her ashes (and by opted, I mean I found a bracelet online that I intend to buy eventually…).  My hesitation is that I don’t always want to remember.  My sister has set up permanent residence in my brain and like some annoying upstairs apartment neighbor, she stomps around a lot, especially those moments when I want peace and quiet.  Okay, that’s probably my worst analogy to date…but hey…whatev.  The point is – when I’m not extremely focused on something, she’s there.  ALL.  THE.  TIME.

So, when she’s not…when I get a respite, it’s kinda nice.  So, there’s this back and forth – I love her, I love my memories of her, I love the things that remind me of her – but all of these have the potential to make me sad – quiet sad, angry sad, happy sad, sad sad.  So, are they good or bad?  Or some weird in-between?

I was talking to the admin of Remembering our lost Siblings about this.  I decided it was time to change my FB pic from my sister and me to something else…  It felt like I was betraying her.  Or making some grand statement that I was over her death.  I am not.  But that picture made me sad to see all the time, so I decided it was time to change it…..I never knew I would cry over changing a FB profile pic.  But, it was super difficult.  So, I related this story to the admin and she replied:

“On my phone I have the screen set to a picture of my brother and I…. It’s like a weird form of torture?!? I love the pic I want to see him but at the same time it makes me sad?!? IDK either!!! What I DO know is, it’s ok not to know… To give myself time to figure it out. Personally I am VERY happy u shared your dilemma. I believe by knowing another person feels the same way it validates the feeling… tells me I’m not alone or nuts… I’ll let u know if/when I change the picture.”

And she’s dead on…  Because (1)  I, too, have a pic of me and my sister as my phone’s background, which I probably won’t change…and (2) it does feel a little like torture.  I want to see her…but it hurts.  I guess the difference between this and the FB pic is that I’m only inflicting pain on myself with my phone.  With FB, I could have been upsetting other people…so maybe that’s why I felt more compelled to change it?  Maybe, it’s going back to that cultural thing I mentioned last time – that pressure to be positive or at least present yourself in a positive, nothing’s wrong, my-sister-didn’t-just-die sort of way…

Obviously, people feel differently about this (referring to tattooed cousin).  Maybe, having something real, tangible, and even tattooed is comforting – some connection to a past loved one.  And, I did want something like that.  I searched my sister’s room up and down, inside and out, and nothing, not a single object, shouted at me and screamed: HERE IS YOUR CONNECTION WITH YOUR SISTER IN THE GREAT BEYOND!!!  I really wanted something to physically hold onto…  Oh well.  Guess that’s not my style.

Who would have thought you could have grief styles?

I can think of no good way to end this tonight.  I’m tired.  In re-reading this, though, I did find an unintended pun.  A slice of black humour pie, anyone?

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…)