Monthly Archives: August 2014

to cope

My big sister (my coworker turned friend turned “we’d like to be roomies” 40 hours a week) lost her real life brother unexpectedly just over a year ago. She sits a foot away from me now and I shimmy behind her chair when she’s not looking. And we talk a lot.

She said something hugely profound a week or two ago when I was upset about my mom. I was saying how I felt like I had been prepared for her passing, but it hasn’t been the case at all. It hurts too much.

She said how it sucks, but one day in the future, it will be easier than the day before.

Is that what coping is? The process of getting to that day?

Apparently cope is from the Latin capa, meaning cape or cloak. My husband was a Latin scholar. His name in class was Romulus. Adorable per usual. I’ll pick his brain on this sucker when he gets home from work, but I’m going to try to work this out. I refuse to think coping is just covering up the underneath, however messy it is.

The psychological definition is “to deal with and attempt to overcome problems and difficulties” and variations of that sort. To deal with problems. In the medical world, we talk about coping skills, defense mechanisms, stressors, the stages of grief, and more. So it’s a little bit of all of that. But there is definitely a wide variation in the stressors and problems we must face in the world. Is coping after the death of a loved one the same as coping during small, potentially good changes?

Maybe. Maybe getting over the loss of a loved one can be easier than it seems right now.

In architecture, coping is defined as “the top layer of a brick or stone wall that is usually higher on one end than the other to allow rain to be carried off easily.” I am not an architecture buff or even a novice beyond the fact that I think that the Eiffel Tower is heaven, so I looked up pictures of this one. The capping off of a wall to allow rain to be carried off easily. Think about it. It’s kind of poetic. Protection against the storm.

It makes me think of the song called “I’ll Cover You” from the musical Rent. It’s sung between two lovers about protecting and loving the other. “Live in my house, I’ll be your shelter…” But what if it wasn’t sung between two people and instead it was between good coping skills and well, you? And what if you didn’t have that shelter over you or the storm got too intense?

I think my big sister was spot-on when she said that one day it won’t hurt as much. One day, my coping skills will be stronger than the storm. Or maybe one day the storm will pass with time alone. I hope that day comes soon.

Tori

P.S. Kathy, I apologize for shimmying behind you. I do it out of love. I don’t know what I’d do without you.

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the greatest plans

It’s no surprise that my mom has passed. I posted a lot about it any chance I could, always with an optimistic spin. Photos of her doing the best she could at communicating from her hospital bed. Photos of her beautiful smile that clearly showed how skinny she had gotten on chemo or how swollen she had gotten on steroids. Mentions of proud I was of her for how strong she had been doing despite the circumstances. All of it was true. She did the best she could, she was beautiful (inside and out), and she was strong. But I also meant for every photo and post to serve as a heads up to those who didn’t really know her story about her decline. A literal status update that she wasn’t doing so well. And also a way to trick myself into believing it was all okay. I wanted to be okay.

The reality, of course, is that I was mourning deeply inside from the day she was diagnosed. I still sobbed at her funeral, but a lot less than I expected, probably since I had cried for the 21 months before that. But I am so tired of crying.

I want to be okay, but keep getting caught up in the cry, “It’s not fair. This wasn’t supposed to happen.”

And I finally realized something.

Things happen every second of every day that weren’t “supposed” to happen. We can try with all of our might to plan and control the future. Our hopes and visions of the future may keep us motivated and moving forward, but life tends to get in the way. Deaths of loved ones, unplanned pregnancies, life changing injuries or illnesses, meeting right people at the right time. Some may think that’s an odd combination of bad and good, but really, they’re just types of change. The label you slap on each as “bad” or “good” is subjective.

My mom passed, and that’s bad. It’s unfortunate. It sucks. And it wasn’t supposed to happen, at least not in my grand view of the future. I always thought I’d have kids and she’d be the most awesome grandmother to them. I promised her I’d never put her in a nursing home. That she’d taken such amazing care of me, that I wanted to be able to return the favor and have her move in with me. I held onto this hope and was so excited about it for my 27 years on this earth. Perhaps it kept me moving forward a little, but the fact that she isn’t here anymore to fulfill that hope doesn’t mean I can stop moving forward towards the future. She’s not in my future anymore, but the impact she made on my life will always be with me. And just because she’s not here anymore doesn’t mean my future won’t be wonderful.

I keep forgetting the quote the title of this blog came from: “It’s supposed to hurt. That’s how you know it meant something.” As long as we live, love, and have deep meaningful relationships, one day, we will also hurt and miss the people we loved tremendously, because nothing can last forever. None of us do.

Some people avoid intimate relationships out of the fear of being hurt. I was one of them. I don’t think I trusted anyone enough to let them in and potentially break my heart. Meeting Ray changed that. He has the heart of my grandfather, so I knew I was safe with him. I am safe with him. I am grateful for him for helping me let my guard down and so much more. Regardless, one day, one of us will pass first unless we’re the adorable old couple at the end of “The Notebook” that pass together. One of us will pass first, and the other will have to cope and carry on. One of us will hurt. And that’s a good thing.

I don’t need pain to know that I loved my mom deeply, but it definitely validates just how much she meant to me. She made me and is the reason I am the person I became. She was inspirational to me. My role model long before she became a warrior against glioblastoma.

She’s not here anymore, but I am. I may hurt, but I need to keep going. During her life and especially during her decline, she always said she wanted two things for me: to be happy and to travel. So I’m going to try and do just that, even if she’s not here to see it.

Ray and I are finally going to Paris in October, Mom. I hear it’s beautiful.

Tori

unsaid

With my mom’s sickness and subsequent passing, I have had tons of good people pour out of the woodwork with sweet words, listening ears, sympathy cards, and more. Messages saying, “We’re here for you,” “Thinking of you,” “There are no words, but you are in our prayers,” “Your mom was an amazing woman, but you knew that,” and “Please know, you are an amazing daughter.” To anyone that said anything close to any of the above, thank you beyond. You kept me going, whether or not I wrote back right away or at all.

In her sickness and passing, however, I have also learned some people don’t know the right things to say. Some people just think of themselves, not you. Some even deal with grief by getting angry and intentionally hurtful. Like they’re so confused and upset inside, they push the excess onto an easy target, even one that’s already suffering. In tragedy, people’s true selves emerge and then some. A very wise Buddha-loving nurse I know so eloquently told me that months ago. And she was so right.

Not so fondly reminiscing some awful things people have actually said to me, I put together a list of things that are better left unsaid to one who is obviously depressed, grieving, or hurting in some way:

“I know what you’re going through.”

My response to that? No, you don’t. But I don’t have the guts to say that aloud. I’m bolder when I’m writing. But seriously, Never, ever tell someone that you know what it feels like to be them. Everyone struggles, but nobody’s struggle is the same. If you knew a person whose brother-in-law’s friend had some kind of cancer, you certainly do not know what it feels like. Even if you, too, had a mom and best friend who suffered and died with glioblastoma, you don’t know what it feels like in my shoes. You don’t have the same exact family dynamics, you don’t have my same coping skills or lack thereof, and you don’t have my heart or my head. If your intention was to say, “I am so sorry. I know a person who had glioblastoma. It’s a horrific disease. Please know that we are thinking of you, you are not alone, and if you ever need someone to talk to, we are here for you,” then say that.

One person at my mom’s wake who was apparently with a friend of my mom but didn’t even personally know my mom told me *at the wake* how she knows “exactly” how I feel, because in a few weeks she will be a five-year cancer survivor. I’m still dumbfounded by her tactlessness. Seriously, people. 

“This is so hard for me. I don’t know what I’m going to do without her.”

Two of my mom’s very good friends have actually said this to me on numerous occasions. I have no idea how you would want me to handle that dagger or to respond to it. I am sorry it’s so hard for you, but I just lost my mom. I helped take care of her for 21 months and was there almost every day. She was my best friend for 27 years, and if I haven’t mentioned it already, she was my mom. My mom just died, and you have the audacity to tell me how hard it is for you that she’s gone. Even if that’s true, this statement would fall under the category of “things better left unsaid.” If it’s not necessary, true, or kind, it shouldn’t be uttered.

“How are you doing?” or “How are you hanging in there?”

I know these are very common phrases and niceties in America. But when someone is going through hell on earth, I finally get it. He or she does not want to admit or even think about how awful they feel. I don’t want to respond with the truth. I don’t want to say, “I’m depressed. It sucks.” I don’t know what else to say though. Which brings me to my next phrase…

“Why haven’t you responded to me?”

The sicker my mom got, the more depressed I got and the more withdrawn I became. Also, the more time I spent with her, the less time I spent doing basic activities of living like sleeping. I also genuinely got extremely forgetful and distracted. Some days I forgot to brush my teeth and put shoes on before leaving the house. I completely forgot to attend a meeting at work. Luckily, my boss is wonderful and understanding.

Anyway, I could be a professional at putting on a smile during hard times, laughing in uncomfortable situations, and putting on a brave face. That doesn’t mean I’m not hurting terribly inside. Most people have been totally understanding if I didn’t have time to get together or didn’t have the energy to respond quickly or at all. Sometimes I didn’t respond because I didn’t want to tell you a lie but I also didn’t want to sound like Debbie Downer. Some people have taken my silence personally. Please know it’s not about you. I’m not trying to hurt your feelings. I’m just trying to get through the day.

“We would do just fine without you.”

I am going to be brazenly honest right now. A very close family member who I am not going to name actually said that to me. They said loads of hurtful, horrible statements during my mom’s sickness that no person should ever hear and especially not from someone who supposedly loves you. But of all the name-calling and in-your-face screaming I received from this person, that comment independently killed me inside.

I prided myself on taking damn good care of my mom and trying to ensure her happiness, health, and safety throughout her sickness and to her final day. To intentionally say something that is hurtful to someone that is already hurting so deeply is downright despicable.

Here’s a sidebar. Robin Williams just took his own life a day or two ago. I presume it was because he was hurting so much inside that he couldn’t take it anymore and couldn’t fathom any other way to make his suffering end. Obviously, I’m not Mr. Williams, and I won’t pretend to know what he felt like. But I do know for certain that the two newscasters who bashed him following his death were plain mean. One even called Mr. Williams a coward. That’s unnecessary, untrue, and unkind. Kind people don’t kick others when they’re down. They offer them a hand or a hug to lift them up.

So that’s my spiel. More like a vent. If someone is hurting, grieving, or just really missing their mom, please be gentle with your word. Remember they’re already fragile. Let them know you’re there for them. Send a random text to them during the day that says, “I love you.” Try to make them laugh. And let them know you care.

Tori 

it’s getting late

I won’t pretend it’s been easy losing my mom. I have uttered, “It’s not fair. I need her,” countless times. But I would have said the same if I lost her when she was 100 years old too.

I’m not the first person to lose their mom, their best friend, or someone they love with every fiber of their being. I will not be the last. I am not special with regard to the fact that I just endured my mom’s passing, wake, and funeral services. I am not a professional at loss, grief, or coping. I actually kind of suck at all the above. Or maybe not entirely like I thought I did. I’m going to make a bold affirmation here: I am really proud of myself for how I have handled my mom’s sickness and death.

I’ve spent a good chunk of the last 21 months since my mom’s diagnosis trying to figure out which is harder: knowing you’re losing someone or losing them abruptly without warning. Knowing how much time they have left or being obliviously and blissfully unaware. I’ve gone back and forth with the pros and cons too many times to count.

On one hand, you get to say what you need to say and help your loved one check some items off of their bucket list, while carrying the burden of knowing they only have limited time left each day. In November 2012, we thought my mom would have one year to live after her surgery because the average life expectancy of patients diagnosed with glioblastoma is 12 months. She obviously did better than that, but it didn’t change the fact that I had a countdown going in my head of how much time I had left to spend with her. This April, we were told my mom only had weeks to a couple months max left, and I spent every day worrying even more than before it would be that day. Quite honestly, at some point I actually hoped it would just be over already. Not because I ever wanted to lose my mom, but because I hated her being scared and knowing her end was near, a nightmare looming over her days. I have cried more days than I haven’t, I have had far too many panic attacks that became asthma attacks, and I still wailed at the funeral home even though I thought I was prepared for her passing.

On the other hand, you go blissfully unaware through your days and all of a sudden, the person you love just isn’t there anymore. You fear they were terrified, you worry they were in pain, you regret the things you said or didn’t say, you ruminate over the things you did together or didn’t get a chance to, and one day you just have to get used to life without them. Like a bandage being ripped off of a wound you didn’t really know you had before. (I must post the disclaimer that I have never lost someone in such a manner, so I don’t actually know how it feels. I think I’d crumble, feel regret, and cry either way though.)

Anyway, after weighing the pros and cons, I think the answer is that both options suck equally for the people left behind. Either way you will lose someone that meant the world to you and you will have to live without them. No matter what, you will grieve. You will cry. You will wish you had more time. You will wonder if you said the right things, did enough, and showed your love enough. You’ll probably deny the truth, get angry, bargain, get depressed, and come to acceptance just like Elisabeth Kubler-Ross said you would.

Expected or unexpected, their deaths will one day come, as will yours. So why not just keep that truth in mind and start living whatever time you have left fully. If you love someone, tell them, tell them how wonderful or beautiful or hilarious they are, tell them how you don’t know what you would do without them. Show your love, give your time, and make every second count starting now. Be a better friend, partner, parent, child, and person, and don’t wait for a terminal diagnosis to start doing so.

That way, expected or unexpected, when their time comes, you will have no regrets. You will still cry over their loss, but you will also be able to smile at their memory, sleep with a clear conscience, and know you did your best. A short life may not be an incomplete one and a long life may not be a full one. Quality and quantity are not the same. But we’re all the same. We all have expiration dates, and some of us know them, while some of us don’t. Yet, we’re made of the same stuff and the same baggage. We all go through trauma and fear and crap. And none of us are special in that regard.

So let’s hold each other tight and enjoy however long we get together. Go give the closest person to you a hug. And if there’s nobody in the room, call a friend and tell them how much they mean to you. Before it’s too late.

sunset at the grand canyon, a trip we helped my mom check off of her bucket list

sunset at the grand canyon, a trip we helped my mom check off of her bucket list

Tori

somewhere over the rainbow

I write best when I’m reflective. Now would be one of those times.

My husband’s mom, dad, and brother came to visit yesterday to help us get out of the house and be here for us. They couldn’t have come at a better time.

We got the news that my mom had one or two days left and to visit quickly. We rushed right over. My mom hadn’t opened her eyes in over a day, stopped eating and drinking, and was breathing erratically despite the oxygen pumping in from her nasal cannula.

I got to speak privately with her and say everything I needed her to hear. My friend and coworker who happens to be a former hospice nurse had told me hearing is the last thing to go, so I firmly believe she heard every word. I reminded her of the great times we’ve had, how strong she’s always been, and how it’s okay to rest now. I told her I’ll be okay and I will try to live a happy life, because I know that’s what she’d want. I told her my husband will take good care of me and his family will too. I guess he told her the same thing; so did his mom. I told her we will go to Paris this autumn. She kept insisting we go there and have a croissant for her.

As a side note, I have to admit I have kept Ray’s family at arm’s length while my mom’s been sick, especially his mom, and I apologize deeply for that. I have been afraid his mom would take my mom’s place, because deep down I knew my mom would pass soon, and if Ray and I ever had kids, they’d never know my mom, but they would know her. I shared a lot with Ray’s mom before we got the news yesterday: the baby clothes my mom and I picked out if we should ever have kids, the baby blanket my mom hand-sewed for me growing up, good stories, and more. And I realized she loved my mom too and just wanted to be there for me. She told my mom, “I know I can’t be the mom you have been to Tori, but I promise we’ll take care of her.” I can’t thank her enough for promising that. To my mother-in-law: I love you and thank you. You’re an incredible mom and person.

Anyway, the oxygen converter was incredibly loud and there was too much stimulation in the room. I talked with my mom and told her I was going to make it more comfortable, something I’ve been trying to do since she’s been sick. I grabbed a photo of us in New York City for her to hold on to until I came back and slipped it under her hand. Then I got to work.

I asked Ray to come back in to help me. The tubing and electrical plug for the converter luckily reached outside the door, so we got it out of the room. I turned the TV off and hid the remote control so nobody would disturb her. We dimmed the lights. I asked Ray if he could find some soft music, but then decided the sound of the ocean would be best. He found an eleven hour stream of the sound of waves crashing on the beach which we left next to her. I told her, “We couldn’t bring you to the ocean, so we brought the ocean to you.” That’s her happy place. I mean, that was her happy place. I still don’t know the right tense to use here. She looked so peaceful.

Ray suggested we go home to get some sleep, as otherwise I’d be hovering over her all night. We grabbed some Asian takeout food on the way home, although hunger isn’t something I feel anymore. I nabbed a fortune cookie and hoped for a good one. “The greatest meditation is a mind that lets go.” Remembering the truth of impermanence, it couldn’t be more fitting.

I needed to go to sleep soon after we returned home. This has all been emotionally exhausting, and I don’t have much energy anymore. Ray’s parents and brother apparently cleaned our house spick and span while I was passed out. I am so thankful for his family and their being here yesterday. For hugging me yesterday especially. Everything happens for a reason.

At some point in the middle of the night, Ray woke me up and delivered the news. My mom stopped breathing around 11:45pm. She had passed. I wasn’t there when it happened, and that’s okay, because I don’t think she’d want me to see her like that. She was protecting me still.

I think I cried a little when Ray delivered the news, but right now it feels more like disbelief and detachment. I knew this time would come and I have grieved and cried ever since she was diagnosed in November 2012. I’ve tried to keep her happy and comfortable since then, and I can rest easy knowing that.

As I told her last night, she has fought so hard for so long, it’s okay to rest now. I promise I’ll be okay. I love you the mostest, Mom. Always have, always will.

You earned your wings.

Tori

In loving memory of Margaret Mary Baczek, July 23, 1953 – August 2, 2014

“Somewhere over the rainbow bluebirds fly…”

I do not have wake or funeral information yet, but I can tell you a few things. When talking about my mom’s final wishes, I told her how in some cultures, they consider passing a time of celebration for one’s life, not a mourning of their death. They even wear bright colors. She loved that sentiment and wanted it for herself. She would like everyone to wear colorful clothes, not black, to her wake and funeral and to remember the good times.

Also, in lieu of flowers, she wanted everyone to consider making a donation to the National Brain Tumor Society in her memory. Here is the link to her memorial page: www.braintumorcommunity.org/goto/MargaretBaczek

Thank you, everyone, for your continued happy thoughts, prayers, kindness, and consideration.

the most beautiful person in the world, inside and out

the most beautiful person in the world, inside and out