April 7, 2010

Hazy Days

Posted in Uncategorized tagged , , , , , at 11:35 pm by letterstoelias

I feel as though I’m in quite a thick fog these days.  It’s shaping up to have been a very wise decision to be off work from the insurance office at this point as my concentration and memory seem to be quite ‘off’.  I completely forgot to take E to ballet yesterday.  No real excuse.  I was thinking about it one moment, then just forgot.  Remarkably, things for the store are still moving along ok at this point, though I could still be putting more effort in some areas there as well I’m sure.

Deb wasn’t kidding when she said that much of the time surrounding the first anniversary is like reliving things over again.  Everything seems to take so much more energy.  I find that my standard answer of ‘fine’ when asked how I’m doing is becoming that much more of a lie again now.  My light conversation feels forced.  I wonder if people can see through the laughter or if they think that because of it I am ‘ok’.  The weight is getting heavier on my heart again (though it’s so often racing) and I feel at the brink of tears more and more often throughout the day (and they come more easily again once I’m alone at night).  My sleeping is affected (which can’t be helping the concentration or memory) and my mind seems constantly fixed on the calendar.  Constantly.

I feel as though I’m on a spinney ride – like the teacups at Disneyland – and I can’t get off.  It’s out of my control.  I’m willing it to stop with all my might but the day keeps coming faster and faster and I’m just not ready.  It can’t have been a year.  It just can’t.  Every day that passes, hour, minute, second, brings it closer and I just want it to stop.

A year ago this night, we went to a hockey game.  We were given tickets for free and despite your double vision causing some difficulties watching the game and a few other issues, in the end we had a decent time.  A very rare ‘date night’ for us – and what would become our last.

(as well as what resulted in the last photos of just the two of us – three lousy attempts at our usual ‘self portraits’ – though you look really good in the last one….with your little crooked smile I love and miss so much)

You were reluctant at first to go, but I dragged you.  Almost literally.  We parked the car close to the stadium which cost a fortune (and a half) but I didn’t want you to have to walk far.  Still, as we went to cross the street to the stadium we were holding hands – in part because we usually did, and in part because you needed to – I stepped off the curb and you hadn’t realized and weren’t ready.  You stumbled and hit your knee hard on the street.  I felt so awful about it.  Your knee was scratched up a bit and I think your jeans even got a slight tear.  You trusted me and needed me, and I felt like I failed you.  You weren’t badly hurt, but it was the idea that I let you fall.  Practically made you fall.

You were, of course, incredibly gracious about it all and continued to reassure me that it wasn’t my fault and it was no big deal, but it was to me.  My life had become consumed by doing everything in my power to keep you alive, to keep you safe, to keep you well.  And I lost.  I couldn’t do it.

That night it was just a fall and scraped knee.  Two weeks later, I lost everything.

The pills, the supplements, the appointments, the special diets, magnets, visualizations, sauna, alkaline water, the tea, the milk, the countless hours of on-line research.  I know that it’s not my fault.  I know we did everything we could.  “We need to know that at least we tried.”  That’s what we would often say when trying to explain to people why we were spending all the money on the alternative treatments and going through what we did.  So that we could ‘rest easy’ knowing that we did all we could.  I know it was not in my control, but there is no resting easy.  At the time I felt very much like maybe, just maybe I could actually find the one ‘thing’ that would save you.  The only thing I know for sure is that if love could have saved you, you would still be here.

It took me some time to get over feeling like there was something I missed, that I had made a mistake somewhere, that I could have done more – and it seems to be returning now and then.  It took me a long time to get over my anger at the doctors for not seeing what was happening at your appointment just 12 hrs before you died.  For letting me wheel you out of the cancer agency in a state like I had never seen you in before.  I know that if they had caught it, perhaps we could have been afforded a little more time with you – but I know that it wouldn’t have been how you wanted.  None of what would have followed would have been on your terms compared to how it actually went.  You would have been hospitalized right there for an emergency surgery, and perhaps never left the hospital.  You made me promise (on more than one occasion) not to let you die in a hospital in Vancouver.  You made me promise to get you home.  At least I managed that.

Ryan died the other day.  Another beautiful man, husband, father lost to this disease.  I trust you greeted him with a big smile and hug, but my heart is breaking for Tash and Talyn.  Reading about his final weeks in their blogs, I can also see now that even if your tumour hadn’t bled that day and you had instead endured the ‘typical’ death (that you didn’t want) it would not have been far off anyhow.

I get so angry sometimes around ‘cancer talk’.  I don’t want this to be taken the wrong way at all, and I’m sure some may – I am SO happy for people who are able to live with cancer when it wasn’t thought possible, and for those who have been cleared of cancer – I wish it was so for everyone – but it hurts to hear people make comments like, ‘I just wasn’t going to let it get me’ or that all you need to do is ‘think positive’ and ‘make up your mind’ to not let it ‘win’.  That this is why some people ‘beat it’ and some don’t.  It pisses me off.

The ‘battle’ is not won or lost with death.  I don’t even like relating it to a battle – but if you must, the battle is in how you face it.  How you live with it, and even how you die with it.  And not just with cancer.

Today, E asked me how people with no legs walk.  It reminded me of a video that Ryan had posted on his blog over a year ago.  I remember how much it touched your heart, and we watched it again tonight:

You finished strong.  As did Ryan.

I know these next few weeks are only going to get harder.  Sian asked me the other day what may help, or what I may need.  The problem is I don’t really know.  Perhaps more time to myself, perhaps more company.  Both?  Neither?  More likely both.  Meals?  Reminder calls so I don’t forget things?  I don’t know.  I don’t know what I’m going to do on ‘the day’ either.  Some have asked, but how exactly do you ‘mark’ something like that?  I know I want to put a memorial in the paper.  Your parents plan to do the same in Vancouver.  But, what else do I do?  I’ve been thinking of getting some suggestions from some of my other ‘widow/er friends’, but I haven’t even had as much energy even for writing comments on their blogs these days (though I’m trying to still keep up with at least reading most of them…).

We were talking about having a little gathering at your parent’s place on the following weekend – but, what would that be like?  I don’t know.  Would I be capable of socializing and sharing happy memories of you or would the emotion of the time be too raw and I would just want to sit and cry?  I don’t know.  I hate having to think of it at all.  I hate that it’s almost here.  I hate that I can’t stop it.  Tick.  Tick.  Tick.

~C~

P.S.  I Love You

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15 Comments »

  1. Dan said,

    Oh Chelsea, this post really touched my heart. Maybe it hits too close to home, or perhaps it allows me to reach out to you with complete understanding. You did all that you could. I did all that I could. I say this, then pause and question myself. It is probably the nature of what we went through. I hated the fact that we were driven to find that next treatment, that next possible cure. How many other diseases are fought by the spouses? From the beginning, I felt like I was supposed to instantly become an expert in this whole brain tumor battle. I hated when I would go to conferences, and have to listen to the same person talking about how they were beating this disease. Everywhere I went, it was the same person being paraded. I too get so worked up when I hear people talk about how they beat cancer, as if by pure will it is possible. What is it supposed to say about our spouses? In the end I know that it was all a numbers game. But I too look at this now as less about beating the cancer, and more about the fight. I look to how much we grew as a couple, and how we faced it with such dignity. I also feel that how we helped our husbands leave this world knowing they were loved, is more than what doctors can do for them.

    I so want you to realize what a gift you were to Elias. And how lovingly you continue to honor him with your writing, and with how you continue to live.

    I know this is a difficult time. Know that many of us are here to support you. Take gentle care of yourself, and allow his love to hold you through this.

    Dan

    • letterstoelias said,

      Thanks so much Dan – I’m glad (and not surprised) you got my point about the cancer talk as well, it makes it feel like the assumption is that people who die just didn’t ‘try’ hard enough, or something to the like. And, I’m sure you and I could sit and swap brain tumour info like two neuro-oncologists . . . though it seems some of what I learned in those late night study sessions seems to have faded away in the last year. It takes an incredible toll, not just the death, but the desperation to change it in the days/weeks/months/years leading up to it – but there are benefits to it as well, as you pointed out.

      I really appreciate the comment on how we helped our husbands leave the world knowing they were loved. I take comfort in the fact that I had the opportunity to express my love for Elias in his final moments, but sometimes I forget about that part of it and that reminder helps me breathe a little lighter. Thanks again.

      ~C~

  2. brenda said,

    Hello,

    I think it’s more than all right to feel angry at the cancer talk. It is kind of like the dying with acceptance and joy talk. Dying from cancer is not a choice or a “I fought as hard as I could.” Of course, people do fight as hard as they can, and for a lot of people the cancer wins regardless – it doesn’t reflect the effort or desire they had to stay alive. And I think it’s probably ok to be angry about dying when you want or you want your loved one to live. This must be positive about everything talk robs people of the right to fully grieve what is truly a horrible situation.

    Do you think at this stage going to a greif counsellor might help you get through the next few weeks? At least it would be space for yourself where you could totally focus on what is going on for you and maybe find some strategies to help get through the tough parts of the day.

    I’ll call tonight, too. (I don’t think you’d appreciate a call at 3:30 in the morning your time… 🙂

  3. Auntie Corilee said,

    Dear Chelsea,

    My heart goes out to you today and every day. I didn’t really know Elias at all until our conversations within the last year of his life and in particular our conversation last Easter when we had dinner at Grandma’s home; Elias was a good man who learned that the very most important thing is love and he loved you and your little ones unconditionally. I was profoundly moved by his insight and know that while he didn’t want to leave you, one of his great concerns was that his health would fail to the point where you had to care for his every need. You fulfilled his wish to bring him home. Know that I hope and pray that peace will come to you as you move through your grief. Take each day one at a time. ❤

    • letterstoelias said,

      Thanks for your beautiful comments Auntie Corilee – and I hope you know, too, how much he valued the chance to have those little chats with you in the last few months.

      You are exactly right – one day at a time. . .

      ~C~

  4. Kimberley said,

    Hi Chelsea,

    You don’t know me, and we have never met, but I have been reading your blog for quite some time now, as I heard about your story through Tasha Westerman. Tasha is my boss at the company I work for, and her and Ryan’s story has been nothing short of awe-inspiring for all of us that know them. I also read Ryan’s blog religiously, and when he mentioned Elias’s death on his blog and the anger he felt about it, that is when I came to know of your story. I just want to say that I think you are so strong and beautiful. The way you write about Elias and your relationship is such an amazing tribute to the love you two shared. Ryan was constantly talking about letting other people know when they have made an impact on them, and I want to share with you that reading your blog has definitely made an impact on me. I think your two girls are beautiful, and I hope you can find some moments of comfort in these tough weeks ahead. You are courageous and inspiring, and I just wanted to let you know that.

    Sending you my most positive thoughts and energy,

    Kimberley

    • letterstoelias said,

      HI Kimberly,

      Thank you so much for taking the time to comment on my blog – and I really appreciate you letting me know that my blog has made an impact on you. Like Ryan, it was Elias’ goal to share his story to help people see the value in life and live in the moment. Tasha and Ryan’s story breaks my heart – it obviously hits close to home and I hate knowing that anyone else has to go through this. Having people like yourself take the time to share with us makes it easier though.

      ~C~

  5. Hugs and love to you, Chelsea. I found myself nodding repeatedly as I read your post and tears rolled down my cheeks. It is a tough time. Just hold on, keep breathing and the teacup ride will eventually slow down so you can get off. In the couple of weeks before March 20th, I had sticky notes everywhere and my usual list of things to do. It is hard to remember the “now stuff” when your brain is back in April 2009.

    Your statement “The only thing I know for sure is that if love could have saved you, you would still be here” really touched my heart, because it’s true for Austin too. Oh that love could be that powerful. In a way it’s more powerful because it survives death and allows Elias and Austin to live on in our hearts and our children’s hearts. “But having them here physically would be so much better than having them in our hearts”, as Aidan recently said (substituting the word Dad for them).

    I wish I had advice for what to do on April 22. We had a small gathering that evening, but I think I would have been just as content with some wine, videos, pictures and lots of kleenex. It is good to share the grief with others who love him and have their own memories and stories, so maybe you can find time for both. Whatever you choose to do, know how much Elias loves you and is so proud of how you’ve lived the last year. You are an amazing woman and a wonderful testament to the love and life you shared with Elias. It is an honour to call you my friend.

    Take care, keep holding on, and call me anytime.

    Love Deb

    • letterstoelias said,

      ❤ Thanks Deb.

      Great to chat with you the other day too =)
      ~C~

  6. Wendy said,

    I’m a brain tumor widow too. My husband lived only 22 days after diagnosis and I have questioned myself time and time again about how I could have missed the signs until it was absolutely too late. I know the end result would have been the same but I still have the same feeling that I somehow failed him. And I also have those mixed emotions when I hear people talk about surviving cancer. It really is the luck (or unluck) of the draw. And when it comes to brain tumors, it seems like they always “win.” Add me to the list of people thinking about you as you walk through these tough days.

    Sending you warm thoughts-

    Wendy

    • letterstoelias said,

      Hi Wendy,
      As I commented on your blog – I had looked for yours before so thanks so much for sharing on mine and helping me ‘find you’. I’m so sorry for your loss as well – I send you warm thoughts in return.

      ~C~

  7. Anna said,

    Hi Chels,
    It just seems so awful what you’re going through…and the look of love on your faces at the game that was to be your final date make it even more heartwrenching. I always sit here after reading a blog, speechless, wordless, emotional and wishing there was something I could do to help. The above comments were so great to read and it made me think of Ryan Westerman’s words in one of his blogs that I now religiously read and refer to…He, like you and Elias (and Dan) are teachers to many…
    “We are here to enjoy life in as many ways as possible. We are here to learn (and this does not apply to school). We are here to spread love to others to ensure that they feel it. We are here to accept the reality that is around us, as it is something that we will never control. Most importantly…we are here to know ourselves. After all, that is all that we can take with us when the time comes to go.”
    His absence must be like a black hole and the pain is hard to imagine and there is no place to turn…I guess only inward. Let’s try a meditation sit down or two together. God knows I could use it. I’m scared to death of losing anyone close to me. Your blog and Ryans have made me more aware my own immortality…I’ll bring a lasagna…thinking of you….

    • letterstoelias said,

      Hi Anna,

      Meditation and lasagna sound great =). Ryan and Elias had similar messages and it’s helpful to hear that it has made an impact on others as it was so important to them both (at least as I gather from the bit I spoke/emailed with Ryan and from reading his blog myself).

      Talk to you soon,
      ~C~

  8. mamabearsarah said,

    oh hun. looking at those pictures of you two. breaks my heart. so strange to think of all these partners of our’s that aren’t here. they all look so great in photos, despite the various illnesses. it makes no sense. i think we’ll spend forever trying to understand/figure it out.

    i am thinking of you in these days. my heart is with you.

    xo
    Sarah

    • letterstoelias said,

      Pictures are funny that way, aren’t they? A blessing and a curse all at the same time . . . .

      Thinking of you right back,
      ~C~


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