Sunday 14 October 2012

"Living with grief, I came to think, is like being a tree confronted with an obstacle. You have to grow around it; your path is shaped by it."- Meghan O'Rourke

Two weeks.
When my mom first died I gave myself two weeks. I thought that would be sufficient enough time to get over what had happened, grieve a little and then move on.

Two years.
It's now been two years. I am only now starting to have some sort of understanding of the immensity of what I am dealing with. 

I have spent a lot of time lately reflecting, thinking about the differences between two years ago and now.  

Two years ago I saw my grief as this outside source of pain, it was something that was happening to me not something that was part of me. It was an interloper. I thought if I was patient enough, if I followed all the right steps it would run its course and go away.

I sat at the kitchen table at the six month marker and decided enough was enough. I had been allowing myself to live with this grief, this intruder, for six months and it was time I took my life back. I marched over to my counsellor's office and told her I was finished with my grief. I was resentful that it had taken over my life and that I had decided to let it go and take my life back.  

That lasted about a day. 

I have now learned that my grief is not something that is happening TO me, it is something that is PART of me. I can't simply get over it and go back to life before, because the life I had before no longer exists and neither does the person I used to be.

I read that grief, the physical pain you feel in your heart, in your chest, in your soul, is all the love you have for that person with no where to go. I find that comforting.

If I am to live with this ache in my heart forever it's nice to think of it as my heart bursting with love for my Mom.  

Wednesday 11 July 2012

"Only by acceptance of the past, can you alter it"- T.S Eliot

It finally hit me yesterday morning, at 6 am while I was getting ready for work, that nothing I did that summer would have made it end any differently.
I could have moved in with Mom, I could have spent every ounce of energy I had taking care of her.  We would have driven each other crazy.  I would be in even worse shape than I am now.

I wouldn't have been able to save her.

Maybe she wouldn't have fallen on the floor that day. Maybe I wouldn't have found her calling for help, maybe that scar and that sound, that pleading for help, wouldn't be burned into me forever, but I wouldn't have been able to change anything.

Maybe there would have been more good times, I would like to think that it would have been possible, but I dont think it would have been like that.  It would have been the same power struggle, the same arguments, the same anger-but intensified because we would have had no space from each other.

I am mad at myself for so many things over that last year.

Of course the one year I decide to be moody and selfish and wrapped up in my own crap at Christmas and not sing Christmas carols with her would be my last chance ever.  I wish we had sang out Christmas carols together.  I will forever wish I hadn't given up that last chance.

I am so mad at myself for rushing through my last birthday dinner with my mom.  I was uncomfortable. I was impatient. I rushed. I always rushed her. Sometimes I feel like the worst daughter in the world. All she wanted to do was be around me and all I did was rush and now she is gone, forever.

Forever is such an unfathomably long time. I still can't understand it.

But I would not have been able to change the outcome of it all.  I could have hounded her to take every pill right on time. I could have watched her every minute, followed her around and done it all, and it would not have changed a thing. That realization is huge.

Monday 25 June 2012

“Have you ever lost someone you love and wanted one more conversation, one more chance to make up for the time when you thought they would be here forever? If so, then you know you can go your whole life collecting days, and none will outweigh the one you wish you had back.” ― Mitch Albom, For One More Day

772 days.

How can it have been that long since I was able to have a normal conversation with my mom?  That is a very long time.

The worst part is the split seconds where I forget any of it happened, when I think "oh I'll ask mom" or "oh I cant wait to tell mom".  Or if I wake from a dream where something has happened to someone and she was there, there is a second where I feel the relief that nothing happened to that person, that it was all a dream, but then I realize that though the other person is fine, that my mom is in fact, gone. It's like losing her all over again.

I miss the way she would always answer the phone.
I miss the smell of her jacket, a strange combination of buckskin, cinnamon gum and cigarettes.
I miss being able to call her and talk about nothing at all.

Most of the time I can't really fathom that she is no longer here.  I think she is still in her little purple and green house tucked away in Nelson.  The reality is so different.  Her spirit is somewhere else and her body is in a tiny black box on a book shelf at my dad's. I was shocked at how small the box is that holds her remains.  At least that's what I'm assuming was in the little, no descript black box, surrounded by pictures of her that I happened to notice one day last summer.  It's such a small box.  How can the immensity of everything that was my mom's body be in such a tiny little box?

I wish I believed in Heaven.  I wish I knew where she was.  I know people say she is "with me wherever I go" and I know what they mean, but I don't know if that's how I feel about it.  I wish I knew what she believed, I feel like whatever she believed is where she is now.

I think about her everyday. It feels like there is a black hole in my chest, in my heart, that can never be filled. I just want my mom to take care of me.  I want her to tell me it will all be ok. I want her to come back.

That's all I want, I just want her to come back.


Tuesday 1 May 2012

"Courage is resistance to fear, mastery of fear, not absence of fear."- Mark Twain


How do you take your mom to the doctor so that someone can tell her she's dying? How do you face that?
How do you get up in the morning knowing you are taking your mom to the doctor to be handed a death sentence?

My brother decides we shouldn't let a doctor tell her the diagnosis.  It doesn't seem right to take her to the doctor knowing what we know without telling her everything ourselves.  I hate the idea of a doctor telling my mom she is dying in a small room in the walk in clinic at the mall.  I am glad my brother has the guts to step up and tell her.  I could never have made the words leave my mouth.

I don't remember if I am in her room when he tells her.  I must be because I remember her reaction, but not his words.

Calm.

My mom is calm.  I don't know what reaction I expected but I am struck by her lack of reaction to this news.  She just nods in acceptance.  There is no discussion.  We get in the car and head to the mall.  It feels awful.

Why does my mom's doctor have to have her office in the mall? It is ridiculous to be standing outside Walmart and KFC trying to deal with the worst news we could have received. The contrast between my surroundings and my feelings could not be any more different. It all seems wrong.

 The little examination room feels small with all of us in it. I realize that the only painting hanging on the wall is of Peggy's Cove and it makes me smile.  But this is not the time for smiles.  But I am always looking for a distraction now.  Why don't they have more things on the walls?

There are so many tumours in my mom's brain I think I hear shock in her doctors voice when she talks about them.

My mom reacts in her typical way.  Calm.  Denial. and then the blame begins.  I struggle most with the blame.  She blames other people, she blames her boss. I try to remember that the tumours are making it so she cannot think logically, but there is part of me that is so used to her "blame game" that I think she would blame this on something other than her cigarettes even if she was able to think clearly.  The blame frustrates me.  The blame has always frustrated me.

But, now I look back and wonder, what difference would it have made? Would I really have wanted her to accept the fact that she smoked cigarettes her whole life and therefore had lung cancer? How do you take credit for your own illness?




Monday 19 March 2012

"Between Thought and Expression Lies a Lifetime".- Lou Reed

Cipralex, Round One.

29 days into the worst case scenario pills.

I can get up in the morning.  I get dressed in the morning.  Sometimes I even leave the house.  Mostly I shower, get dressed like I'm actually going out, but then head to the couch. The day passes and it's lather, rinse, repeat the next day, and the day after that and then a week has gone by and I still haven't gone to class.

Double dosage starts tomorrow

Apparently I should be feeling better than I am by now.  I should no longer be standing in my own way.  But I am.

This shakes my idea that I was only "mildly depressed".  Mildly depressed people function on 5-10mg.  I am starting 20mg.

I still hate that it has come to this.  I still hate that they help.  I still hate things.

The first two weeks were bad.  Day one I was almost manic.  I described an entire movie in 3 minutes, quite possibly without breathing in between thoughts.  I calmed down quickly, but no longer needed sleep.  I would wake up at all hours of the night like I had been given adrenaline shots. This went on for a while.

 Day two I was on some sort of high, everything was amazing and I could not stop being in the best mood ever. Everything was giggle worthy.  I thought that if THIS was what anti-depressants were all about I should have done this long ago.  I was hoping that would last but it didn't.  That only lasted a day.

 For a few days I couldn't eat.

  And then when that all calmed down the anxiety started.

The worst anxiety I have ever experienced, the kind of anxiety that made it hard to swallow.  Sitting through class was torturous. I would have to get up and go walk around every 15 minutes to keep myself from absolutely losing my mind. That lasted for longer than I would have liked.  This has mostly calmed down but some days the anxiety comes creeping back.

Now my doctor has doubled my dose and as of tomorrow I start taking more.  I dread the idea that the side effects will come back.

There is how I think I'm doing, how I want to be doing, and how I'm actually doing and right now none of them line up.  I thought I was doing great, until I realized it was simply that I was doing better, and that I wanted so much to be doing great I had convinced myself I was.  Until my doctor asked me to rate how I am on a scale.  I should be around a ten, but I'm around a 6, and I realized I hadn't gone to class for over a week.

So double dose of the worst case scenario pills it is.





Saturday 18 February 2012

"There is a comfort in the strength of love: 'Twill make a thing endurable, which else would overset the brain, or break the heart." -William Wordsworth

What happened next:

I get home and go to see my mom.  I am not sure what to expect.  I find my mom to be in high spirits but her words are all coming out wrong.  It's frightening.   She wants to take me for lunch. I try to suggest that we can stay home and eat, but that won't do. I still let her call the shots, she's my mom and that hasn't changed, she is still in charge. She's excited I am here and wants to take me for lunch.  She wants to walk down town.  I am curious to see what she is capable of because I know these are all things she will try to do alone anyway, might as well see if she can do all these things.

This is a mistake.  She cannot walk properly.  She almost falls down the hill, but we keep going.  She refuses to turn around.  She refuses to do anything but keep going.  She wants to take me for lunch, and who am I to say any different.  We make it about half way before we have to sit down, not becuase she wants to, but because I need a break.  I have had to walk behind her, essentially hugging her from behind to hold her up the whole time. This makes her angry with me, but if I let go she falls over.  She refuses to admit this is the truth, according to her she is off balance because I won't let go.  When I let go she crumples to the ground.

The whole time all I can think is "what have I done, we shouldn't have left the house, what have I done, we shouldn't have left the house" Repeat, Repeat, Repeat.

We make it. We get to the restaurant but she can't talk properly to order her lunch.  I try to help.  Suddenly I can't remember if it's the mushrooms she always likes on her burger with no cheese, or is it cheese and no mushrooms. How can I have forgotten this? It's always been the same.  She can't tell me. The waiter is being patient.  How can I not remember?  Something so simple. I order some combination and hope that it's right.  We eat and I call a friend to give us a ride home.  I make sure she's safe in the house and I head to my temporary home to try to understand what just happened.

What just happened?

My brother gets to town the next day.  I feel relief that he is here now too.

Two days later we take mom for a CAT scan.  She cant talk today.  She is not happy about any of this and the lack of communication makes it even worse.  We get into a fight with her outside the hospital about being able to smoke on hopital grounds. It feels like fighting with a child.  She has lost her ability to communicate with words and it's a long day that ends in the worst way possible.

I dont remember much about the day, about the hospital, about any of that part.  I don't remember if the scan was quick, if my brother and I sat outside the room the whole time, if we wandered around, if we left the hospital, if it was only 5 min and then it was over.  I can't remember any of it.

I remember seeing my mom on the scan table, and how little she seemed, how scared she looked.  I remember how good my brother was at holding her hand and reassuring her about what was going to happen and that it would be ok. I couldn't even look at her.  Seeing her look small and helpless was too scary.  I could not face it.  I could not hold her hand.  I could not reassure her.  I got uncomfortable. I looked at the ground. I got out of that room as fast as I could.

I remember being amazed at how patient, calm and positive my brother could be while I couldn't even look at her.

We get my mom back home and all go our own ways for a few hours.  After dinner I feel this need to go up the road to just check in on her.  I find everyone there. I smile at the fact that we all seemed to have the same thought.  It's a small house and it feels crowded with us all in it, hanging out in the kitchen.  My dad asks to talk to me outside for a minute.

My dad tells me the Dr called with results from the CAT scan.  I am shocked we got results so quickly.  He says it wasn't a stroke.  I'm confused.  He says it's lung cancer.  It's spread to her brain.  She has many tumours.  Time slows down.  I understand the words he's saying but I cant quite figure out what he means, or what it all means.  The tears stream and all I seem to be able to do is twirl my hair in my fingers.

My mom doesn't know.  We are going to take her to the doctor tomorrow to tell her.

I have to go back into the house and pretend I dont know this horrible secret.  How can I look at my mom in the eye knowing this horrible secret.  She is so thrilled to have everyone around.  She is enjoying having her family back.

I don't remember how long I stayed at the house but I do remember getting back to where I was staying and sitting on the front step for an hour crying uncontrolably.  It was dark out so I guess I must have been at mom's for a while

What will I do without my mom?  That is the only thing I can think. On repeat.

Fear of the unknown is a terrible thing.  I have never truly lost anyone.  This is new, horrific territory and I do not want anything to do with it.  I wish life had a pause button, a chance for me to catch my breath and assess what's actually going on.  A chance to catch my brain up with reality.  This is something I still wish.  That I could just take a break and get things figured out without losing time.


Friday 17 February 2012

"Fractures well cured make us more strong." - Emerson

I now have this tiny bottle of over priced little white pills which are supposed to help my neurotransmitters produce more serotonin.  Simple as that.  And yet, something that seems so simple has been my greatest fear through all of this, that things would get so bad that I would not be able to control things any more and that these pills would be the solution.

My counsellor believes I am depressed.  My doctor believes I am depressed.  Most days I believe I am depressed.

Is this the road I want to go down though?  I always applaud other people for getting help, for getting past the stigma of depression and medication.  This has nothing to do with me being worried about the labels and people's perception of me.

Have I really tired everything else? Maybe not, but my life doesn't seem to have the time to fit every alternative in.  Or maybe I do have the time I am just too busy being depressed to use it wisely.

I am frustrated that this time in my life has such a dark cloud over it.  I love living with my boyfriend, I love living in Halifax, I love Dalhousie even if I do not love my English degree.   I know I will eternally miss my mom, but the sadness and the tears aren't even about her most of the time.

How did I get so depressed? Everything inside me feels like it carries a heavy weight with me every where I go.  Sometimes that weight makes it so hard just to do things I need to do.  I missed class the other day because making breakfast seemed like too much work. There are days I have missed class because getting out of my pajamas is too hard.  Some days leaving the couch is next to impossible.

So here I am, facing this tiny bottle of worst case scenario pills.

It's the commitment that has me worried.  4 weeks before I start to feel any effect.  6 months before they will even consider seeing if I am ready to come off of them, slowly.

What if I can never come off of them?  I do not want to be on these forever.

What if they make my life so much better that I don't WANT to come off of them?

That is my biggest fear.

 Not that I will become addicted, but that I will actually want them forever.

I still haven't taken any.

Wednesday 8 February 2012

“What we call the beginning is often the end. And to make an end is to make a beginning. The end is where we start from.”-T.S Eliot

Do I start at the beginning? Do I lay everything out in order? Do I jump from memory to memory like the maelstrom that is my brain lately?

I didn't realize my mom was sick.  I hadn't called her in a while.  There guilt here is heavy.  My dad had been noticing little things for about a month.  The only time I called her in well over a month was to quickly wish her Happy Mother's Day and get off the phone as quickly as possible because I was in a rush to go do something.  I even cut her off when she tried to chat more.

I talk to my mom later that night.  She answers the phone the way she always does, the same "Well helloooo" I always hear.  I think everyone must be over reacting because clearly she's fine.  Relief sets in.  And then I hear "Marvin...and son...think...(long pause in which there is enough time for my heart to sink to the deepest depths of my stomach and for my whole world to implode)...something wrong."  I get a feeling that I am no longer in my own body.  My ears start ringing.  I calmly try to reply with something cheerful and positive.

She can't come up with the right words.  She can't come up with her own son's name.  I don't know what to do with myself and spend a couple days in a furious cleaning spree and our kitchen has never looked so sparkly.  I'm pretty sure the bathroom looks awesome too.

They think she's had a stroke.  I Google stroke symptoms and see that recovery is an option.  I am hopeful.  I plan to  get Mom set up with  therapy and be back in two weeks to start my job.  I get a plane ticket and get ready to go home.

Somewhere in all this, my brother calls me on his lunch break and gets mad at me for an hour about an off handed, unnecessary comment I made 2 or 3 years ago.  I had carelessly said I was not going to be the one who would take care of mom in her old age "because if she's going to be growing pot in the back yard it's not my basement she'll be living in when she's old."  It's taken wildly out of context and the tone is set for almost all interactions I will have with my brother for the next year and a half: Complete misunderstanding of each other.

I wish all the time I could take back all my careless, hurtful comments that I have made after all the fights with my mom over our lifetime of fighting.

Now, it's not like I used to spend a lot of time wondering what it would be like if my parents were sick, or worse, dying, but I did have ideas and expectations of how it would go, of how I would react and how people around me would react.  I've seen the movies, I've watched enough tv.  We will come together.  Someone else will take care of things and since I am the youngest I will be able to fly under the radar.  My brother is the one who is good at being organized, facing challenges and dealing with the world.  We will all come together and there will be someone to take care of Me through all this.

The reality is nothing like I'd imagined.  This is not the way any of this should be happening.  We have started off fighting rather than hearing each other.  My brother and I both seem to feel like we are facing this alone.  I am scared and I don't know what to do, or even how to face the fact that I am scared.

I always thought an experience like this would bring my brother and I together since we are the only two people in the world who are facing it.  Instead we are in our separate corners, with our wildly different views on everything, squaring off, looking into the eyes of yet another fight.

I have picked my share of fights over the last year and a half.  I lashed out at some friends, said hurtful things to my brother, told the woman at the post office to go fuck herself.

I have been withdrawn.  I have been angry.  I have been sad, confused, devastated.  Most of the time my moods and reactions don't seem to be connected to my grief but my counsellor assures me they are.  It doesn't make any sense to me.

I don't think people talk about grief enough.  I think this lack of communication makes the feelings of aloneness that are created by grief even worse.  But, it's a Catch 22.  No matter how many people I seem to speak to about it, even if they have experienced grief too, I still feel like there is no one in the whole entire world that can possibly understand how I feel.  And then I feel more alone.

I thought I would be ok.  I thought that somehow I had distanced myself from my mom enough over the years that when the time came I would be sad, but I would be ok.  My life wouldn't change too much.  I was more wrong about this than I have ever been about anything, and probably more wrong about this than I will ever be about anything.

Monday 6 February 2012

Well, now what?

I've made my first confession, I'm not ok, but now what?

Do I face up to the fact that over the last year and a half most of my friends have only gotten cursory text messages, because how do you fit the truth into 300 characters?  And do I really want to have to write that text message over and over again to everyone?  How do I fit the vast expanse of grief into a text message?

I could have called, except, I couldn't. "I'm ok" comes out of my mouth and we talk about school, boys, clothes.  I mention I've been seeing a counsellor and everyone breaths a sigh of relief, including myself.  I no longer have to talk to any of my friends about it because I have my counsellor. That's what I'm supposed to do.  The pressure is off everyone.  Clearly I'm dealing with it properly.  I've taken all the right steps. I have all these "tools" to deal with my grief.  It'll be behind me in no time.  No one will change their perception of me. No one wants to be around someone who is sad all the time anyway, so "I'm ok" and they know it.

Except I'm not.

But how do I get to "ok"?  How can I feel like anyone can understand me any more if I have all the most important, life changing experiences locked up tight inside me with the key buried under my pile of "ok"s.   I have always been private, but I have also always been open and honest.  I have never had so many things, days, experiences, hidden from people. I have kept them all inside me because that way I can control them. They aren't out there for the world to know, to judge, to try to understand.

Part of all this is the feeling that even if I did tell everyone everything they still wouldn't understand.

Some of my friends know a few of the things, some of them know a few more.  But, I feel like without getting everything out there how can my friends and I have any understanding of each other at all any more.  All I want is for people to know where I am coming from but how can I expect them to do that if I don't tell them.

How do I bridge this giant crevasse that has been created?

CAN I figure out the "new me" without my friends?  "Old me" did everything on her own, but "Old me" got me into this uncommunicative mess.  This collision of "Old" and "New" has left me with all these crumbling walls that I'm not sure if I'm supposed to rebuild or break down.

So maybe I need to tell the stories of how I got here, to a place where I feel like the only way I can open up to my friends is by hiding behind words on the internet, to a place where even though I know I am loved by my friends I have never felt so isolated, lost and alone.

Sunday 5 February 2012

"But I'll be ok"

I'm sure my friends have lost count of the amount of times I've said "But I'll be ok" over the last year and a half. It seems to be my go-to statement.

My mom died, "but I'll be ok".

My mom was diagnosed with lung cancer and her brain was riddled with tumours.  She couldn't remember my name some days. She couldn't remember by brother's other days.  "But I'll be ok"

I quit my job, moved home and took care of my mom while she withered away and died, "but I'll be ok"

I helped her cut all her hair off when the treatment made it start to fall out, "but I'll be ok"

I found my mom on the kitchen floor surrounded by blood,  she'd been there for hours, waiting for me because she couldn't get up on her own. I wasn't strong enough to get her off the floor and I had to call an ambulance for help.

"But I'll be ok"

My brother and I had to have the paramedics threaten to arrest her to take her to the hospital to die because she just wanted to stay at home but I wasn't physically strong enough to take care of her at home any more.
"But I'll be ok"

I said goodbye to my mom in the hospital, three days before she died, and returned to Halifax to finish school.  I spent every day of the 15 weeks between her diagnosis and that day in the hospital trying to figure out what I would say, knowing I would have to face that day, knowing that I was actually going to have to say goodbye, forever, to my mom and get on a plane and leave. After 105 days of trying to think of what I could say, all I could say was "goodbye, I love you, I'll be ok."

The last words I ever said to her were "I'll be ok"

I feel like I need to be ok because I told her I would be ok.
I don't know how to let people be there for me, I don't want people to feel sorry for me or think I'm a disaster, so I tell everyone "I'll be ok"

I don't know how to explain to people that I'm not ok, that I don't know how to be ok any more.  Before this, "I'll be ok" was like my mantra, it's what got me through everything, from break ups to fights to big life decisions.   No matter how shitty things were I knew that I was strong enough to get through it, it may hurt and I may come out different but I would "be ok".

The thing is, I'm not that person any more.  I always thought that I would get through this grief and come out the other side a stronger version of me.  I'm starting to realize that that version of me just isn't there any more.  So I feel like I'm starting from scratch, which I wasn't ready for.  I wasn't ready to lose my mom, and myself.

I thought if I attacked my grief with counselling and were proactive I could just work through it and get it all behind me.

Even as I write this, I have to resist the urge to put "But I'll be ok" at the end of every sentence.
So why am I writing this? Because I feel like it's time that my friends really know how I'm doing.  Becuase I need to stop telling everyone that "I'll be ok" when I don't believe it.  I feel like so much has happened and I haven't really told any one.

So, how does a person who doesn't like to tell people how she's really doing let her friends know what really happened and how she's really doing? She hides behind a blog.