I’d like to make an appointment for a grief wax, today, if possible.

I finally used up the spa gift card I won at Steve’s retirement/fundraiser event from 2010.  When I won the spa basket I was excited…helllloooo massage.  But, it turned out it was harder than I realized to actually use it.  It felt strange to benefit from my brother’s illness.  Your brother is dying, here have a massage.

I used the gift card mostly for leg waxing.

If only it was as easy to rip the sorrow out of my heart as easily as the hairs off my leg.  What a wonderful idea.  See, you have this pesky grief hanging on you.  You just need someone to forcefully rip it off.  The treatment would start with a hug, like the warm wax, it is soothing, comforting.  You say, this feels good.  Then, rip, off comes the grief.  It hurts at first because the grief became a part of you.  But like the hair, you say good riddance.

If only it were that easy. But like the hair, the sorrow would probably just come back.

I guess it was fitting to use up the last of the gift card today since tomorrow I am on my way to Oahu then next week Kona (by the way, the waxer lady used to live on Oahu, interesting).  My mind knows he will never again walk the beaches, body surf at Hapuna, jog in the early morning and bring us back a cinnamon roll, eat at that Thai place he loved so much.

But my heart knows he is there, and I can’t wait to see him.

DSC01721_edited-1

I can never look a PB&J in the eye again

Been craving PB&J sandwiches the last few weeks.  Don’t get me wrong, I love them, and that should be enough of a reason to crave them, right?

But, as I opened the cupboard to make a sandwich it hit me.  Two jars of peanut butter stared back at me.

The last time I noticed there were two jars of peanut butter it was not my proudest day.  Back then both jars were empty and I cried.  And cried.  I think I may have thrown one on the ground (plastic, thank goodness) and shook my fist at the sky.

Now I do love peanut butter, but really, I don’t looooooove it…not enough to cry about it.

Just like two years ago, I am reaching for some comfort food.  THE DAY is getting closer.  It can’t really be two years.  It feels like forever.  It feels like yesterday.

I can’t believe it has been nearly a year since I posted.  I started one after Katelyn’s wedding.  It is still in draft.  Someday I will finish it.

I think of him every day.  I hear him laugh when something funny happens.

And in case you are wondering, I make sure we are not out of peanut butter since that day.

(link to my tantrum post, even though I freaked out that day, when I told some friends about it we ended up laughing.  If you hear someone ask me how many jars were there and I say “TWO!” and start laughing, you will know why)

https://grumpybutterfly.wordpress.com/2011/01/22/tantrum-thy-name-is-me/

Avoiding the Past (tense)

A year has passed.  My dad did a great blog of our day 2/18/2012…so rather than compete with my dad (hard not to do, we are a competitive bunch) and recreate the day myself, here is a link to his blog post  (Just between you and me, I would probably win.  Not that we are competing or anything, and it is not like I have to win.  It is just better that I do.  His ego is big enough already, we have to keep him in his place.  Mom needs all the help she can get.)

http://skinhorsereal.wordpress.com/2012/03/01/the-deceptiveness-of-dread/ 

I usually write a post and re-write it over several days before I actually post it.  And as some of my subscribers know, I post and then usually make changes almost immediately.  This is the first one I wrote and posted in the same day, so if it jumps around some, that is my excuse.

When asked how many siblings I have, I say 3.  I still have 3.  Will always have 3.  No amount of time will make that number decrease. I find it is hard to refer to Steve in the past tense.  When I talk about him words like “used to” or “had” don’t sound right.  Nor does adding “ed” to words make any sense.  I don’t say “I loved him” because the love never stopped.  I love him.  Simple.

To me he still is.  He IS a fisherman, an athlete, brother, son, husband, father, friend, baker, prankster, promoter, cousin, uncle, nephew, brother-in-law, son-in-law, story-teller, shit starter (yes, I went there…you all know it is true).

And teacher.  There are so many ways he still teaches, not only us but people he just met for a brief moment and people he never met.  I am touched over and over by how much he impacts others.  Makes me realize we don’t often know what others will remember about our interactions.  Probably not how our hair looks (Yes, have to mention the hair.  It is always on my mind, no pun intended.)  Or whether our shoes matched, and I don’t mean match the outfit, but match each other (I don’t know how I made it out the door with two different shoes.  In my mind I told Steve about my shoes and heard him laugh and laugh.  That laughter, though only in my head, was worth looking like a fool for a day).  Maybe people will remember our witty comments, or sarcastic remarks.  Hopefully we will be remembered for our compassion, generosity, and heartfelt kindness that surprises the giver as much as it surprises the receiver…we don’t always know what we are capable of till we reach beyond our comfort zone (I know you will like that one dad, you risk taker you).

And Steve is still full of surprises.  Visiting us when we think we are alone or when we dream.  Sometimes startling us, sometimes making us laugh.  Sometimes just calling out our name, maybe to remind us we not as alone as it feels.  He still tries to comfort us the only way he now can…even if it freaks us out a little.  Actually, he probably likes that he makes us jump every now and then.

He is all he ever was, but I don’t think he is all he will ever be.  Holly found an article written about him in April 2010.  A man commented on the article in November 2010 after having sat by Steve during a flight back from Hawaii.  A total stranger, but after having spent 5 hours next to Steve this man states he “is a better person from having met Steve”.  Five hours and this man was touched by Steve.  Most people don’t leave that kind of impression after 5 years.

That kind of magic never fades, and I am oh so proud every day to be his sister.  (Sorry to those who have to keep hearing me brag…just kidding, I actually am not sorry because I am going to keep doing it.  You have been warned.)

A few bragging articles:

http://abcnews.go.com/Health/MensHealthNews/rare-disease-forces-popular-teacher-retire/story?id=10429408

http://www.komonews.com/news/local/91524984.html

http://www.issaquahpress.com/2010/06/15/never-say-quit-teacher-leaves-a-final-lesson/

http://www.flintofts.com/  This is still available, including the guest book comments

My turn

Well, my birthday came and went and I survived.  I still don’t know why the birthdays are such a big thing to me this year.  I have not spent every birthday with my family so this fixation is a little weird.

I got through the headache, the shakes, the tears and spent half the day at a casino.  In memory of my brother?  Nope.  He was not a gambler so this was definitely not in his memory.  But he would have gotten some major giggles over the machine Holly found.  Steve got a lot of laughs from a college nickname I had (thanks Deltas) that I was totally innocent of  (totally!).  Thanks Holly, that made my day even if I did not win any money.  Thinking of how much Steve would have laughed at the game and your impression of the main character is priceless.

What did I do in memory of him…spent the other half of the day watching football of course.

I have no title

I don’t remember Christmas 2010.  I got home Christmas day and realized I couldn’t really remember the last 2 days.  Everything was a blur.  I had a couple of memories but not many.  So my last Christmas with him is full of holes.

My first Christmas without him?  Also full of holes but of a different kind. 

His absence weighed heavily on my heart.  But I heard him in the laughter, saw him in his kids, felt him while helping to make the cinnamon rolls with Polly, heard him giggle as we played games, and honored him with the candles we lit in his memory (thanks Bec).

Seeing all our candles together was one of the most symbolic moments of my life.  I felt  I could put all my loss into the flame and it would hold it for me so I could enjoy the holiday.  I knew I would take it back later, but for a moment I could let the flame carry it for me.  All those flames was like one big, warm group hug.              

(picture from Mitch, lovely)

Five down, one to go.

Well, today is the last birthday in the family before mine.  Unlike the other birthdays I am unable to be there.  I know family members end up living other places but I have never gotten used to you being so far away.  And never more so than this year.  I felt a sense of desperation that you were so far away as Steve made this one life changing decision that forever changed us all.  We talked about that a little in February, I so wanted everyone in one place.  When you were able to change your schedule the relief I felt was overwhelming.  Though still emotional over what was to come, I felt calmer and less hysterical.  We would all be together.  I could not imagine you not here with us.

While I know your life will continue to take you to new adventures and places, I still regret the distance of land and time between us.  I miss your calm and healing presence, my sister.

Every (damn) Day

Every (damn) day I miss Steve.  The holidays just make me miss him more.  Every year Steve wrote a Christmas letter.  He would take one word and write a paragraph that started with a letter from the word.  This year Polly wrote a beautiful letter using the word “traditions”.  It was a great way to honor Steve, so thank you Polly.  I know this was not an easy thing to do.

Every (damn) day as the holidays approach, I find myself feeling more and more vulnerable.  When making the Christmas calendar for my parents this year (oops, that’s a secret…don’t tell mom and dad) I was often distracted by pictures of Steve.  The memories the pictures evoked whisked me away and I found myself floundering.  They are all happy memories, but also reminders we won’t be able to create new memories of Steve, with Steve.

Every (damn) day I carry Steve with me (right here I could say, “He ain’t heavy, he’s my brother” but I won’t).  He is tucked into my heart, and my purse.  Yes, my purse.  The coral heart Becky gave us all to hold the day we said good-bye to Steve, the fishing flies (kept in a butterfly container so I don’t poke myself rummaging in my purse).  I also keep the memorial pamphlet and the letter I had Greg read at the service. 

I read these often to remind myself how much laughter was part of Steve’s life.  I cry but I also laugh remembering what a personality he had.  I will need to remind myself of this often in the next week or so.  If he could he would make us laugh and laugh often.  Especially when the tears start to show.  Steve had a way of not letting people take themselves too seriously.  I need a little of that right now.

So here’s to you Steve. My good-bye letter that Greg read for me at the service in February.   Greg described it as a love letter to my brother.  That doesn’t sound the least bit creepy.

I have been doing a lot of writing about Steve the last few days, one would think I am out of things to say.  Anyone who knows me will know I always have something else to say.

Sometimes when someone passes everyone talks about how wonderful and perfect the person was.  So let me start by saying Steve teased me constantly, tricked me over and over (I fell for the same prank more than once), knew exactly what buttons to push, and he was hugely competitive sometimes he would do anything to win.  He hated to lose to anyone especially his youngest sister and we had to play Boggle with a dictionary to catch the words he would make up.  When he realized he would never win that game he refused to play. 

Now that I have that out in the open, let me say Steve was wonderful and perfect.  He took me fishing even though he knew I would talk the entire time and scare the fish away.  When I was 15 he took me to college with him where I spent my spring break attending classes.  I did not know how much I would love that, but he knew I would.  When I was 18 and he was 26 he took me with him to one of his baseball tournaments in Eastern Washington.  When we got back I got sick and he stayed on the floor with me for three days and brought me anything I needed.  He always made me laugh, and laugh, and laugh.

We watched some videos of Steve this weekend and I was reminded of how vibrant he was, how much making others laugh and be happy was important to him.  I believe Steve showed how he loved others by his actions…baking, making us laugh, teaching us to fish, and remembering little details about us.  How hard these last few months must have been for him as some of these avenues slipped away from him.  How hard it must have been for him to watch our hearts break when he spent his whole life making us laugh.  But he never lost his sense of humor, making us laugh till the end, despite our tears.

We honor Steve with stories, memories and laughter.  Polly, Maddie and Kellen will have no doubts how much Steve is loved and missed.  Polly brought out the best in Steve and I see many pieces of Steve in Maddie and Kellen.   They embody many of Steve’s qualities and will find their own way to pass on his legacy. 

There are so many things I do not know about my brother.  In this last year I got to meet him many times over through how other people see him.  

I am proud to be his sister.  He is beautiful.

What’s in a date? That which we call Thanksgiving held on any other date is just as sweet…

Today we had Thanksgiving.  Yes it is only November 19th.  Yes, thanksgiving really is the 24th.  But I tell you, we had it.

Not everyone could be here today, but we took the opportunity of my sister and her husband traveling through Seattle to have thanksgiving a little early. 

Nearly everyone forgot at one time or another this week that it really wasn’t thanksgiving.  It was just Saturday November 19th.  But what a Saturday it was. 

As we were leaving it hit me.   Every time  my family gets together like this, it feels like a holiday.  It doesn’t matter the reason why we get together.  Getting together feels like a celebration.   It felt good to be together.  To perform the rituals that bring us peace and comfort.

We ate, laughed, played games,and laughed again.    It was fun to watch my newphew who is just as competitive and funny as my brother.

And we missed him.  Missed him so terribly.

Last year at Thanksgiving I was thankful for knowing.  Knowing my brother was going to die gave me the chance to spend more time with him.  To learn about him, to appreciate him more.  I learned more about myself as well.

I do believe knowledge is power.  So why do I feel so powerless?  Powerless to make him better, powerless to stop the tears.   The grief has a much power over me today as it did months ago.

This year I am thankful for laughter and for my family.

I Know It’s Taboo, But I Still Thought It Was Safe

Boys against girls.  That’s how we have to play games at my sister’s house.  She and her husband cannot be on the same team.  But do the boys really think they will win a clue giving game against sisters that think a like?  Suckers.

So yes, Hol and I were cruisin’.  Score, Score, Score.  We gave up some points getting buzzed, but hey, we can afford it.  We are way ahead.

It’s my turn, I’m doing pretty good, then WHAM…my clue giving flow is rudely interrupted.  I can’t breathe.  I can’t think.  I can only shake my head no.  At least that is what I think I did.  I pass on the word.  Not just pass…I take it out and put it on the table, it doesn’t belong with the rest of the cards, evil word.  Don’t the game makers know my brother just died?  What were they thinking putting that word in here?   Maybe I could rip it up later?  I wonder if Holly and Mike would notice it missing.  I can’t see the next word.  I am still shaking my head no, at least I think I am.  How much time has gone by, maybe an hour?  A day?   I am sure the timer has run out, it must have.  Maybe this is a nightmare and I am stuck in time. 

Quick thinking Holly knocks the timer over.  We cry a little.  Then it’s back to the game, we are our brother’s sisters after all–competitive.

It’s an innocent game.  Just a game.  Just a word on a card. 

Ashes.

(In case you are wondering, we still won)

Just My Imagination…

Yesterday was my dad’s birthday.  I wanted to ask him what it was like.  The first one without Steve.  I didn’t even mention his name.  Sometimes I am not sure if I should talk about him, maybe it will make someone cry…make me cry.  But if I don’t talk about him does it look like I forgot him?  But if I talk about him too much will it look like I am obsessing?  If I don’t, does it look like I don’t care? 

So I didn’t mention his name.  I didn’t ask what it was like to have a birthday without him.  I just pretended it didn’t happen.  Chicken.

But today, Chris and I went to the cemetery to see Steve’s plaque.  Can’t pretend there. We just sat on the bench and I cried.  It still does not seem real.  It can’t be real.   This was not supposed to happen.  I cannot imagine him gone, and I can’t wish him back.

I don’t know how long we sat there.  The tears just wouldn’t stop.  I used to make a lot of noise when I cried hard.  Now it just seems like the tears silently pour down my face.  The plaque says “Always in our hearts” which is perfect.  He is in my heart.  I thought my heart was incomplete, but it can’t be with him still there.  All the pieces are there, but it hurts.  What I found is my heart is bruised. 

Later we walked around town a little, visited the creek Steve used to fish.  Chris pointed out places Steve used to take him fishing when we were young.  Another thing I did not know about Steve until recently…he used to take three of my guy friends fishing when we were in elementary school and Steve was in high school.  How cool is that?

I find myself wishing I had more imagination.  I could use my imagination to revive memories I did not know I would need later.  Memories of things forgotten long ago that I did not know were important.  Memories of him I did not know would be so treasured now that I can’t create more.  If I could have imagined ever loosing him so early, I could have written down every story he told, every funny moment we shared, every trick he pulled, every giving gesture he made.  I could have recorded his giggle that I miss so much.  

Better yet, I could have imagined a cure and we would not have lost him.  Imagine that.

Break Out the Day Planner

We plan the most important decisions, days and events of our life.  Or at least we try to.  Some plan how many children to have, and when to have them.  Most plan their weddings and if you are a woman (and some men), you probably started planning it in elementary school (I know I did, even had a folder I kept till my mid 20’s).   If we are lucky we get to plan what job we have and when to move on to the next job, or when to retire.  We plan out where we live as best we can. 

There are some decisions I can make very fast…but I can take an hour to pick out a name for a character I create in an on-line game me and my husband play.  It took me three hours to pick out my eye glasses, three years to pick out curtains, and 10 years to pick a color to paint my walls (I have only managed to decide on the bathroom so far).   If you think I am joking, then you haven’t met me or been shopping with me for glasses or paint.  The curtains I blame on my husband…he insisted on very thick, functional curtains and I wanted pretty flowery ones.  What did we settle on?  Sage green with tassels. 

If we spend time planning other parts of our lives, why is it so strange to plan the last important decision of our life? (disclaimer…only with regards to death with dignity, of course)

After trying to accommodate us by avoiding birthdays, looking at travel plans and school schedules, my brother picked his day and the planning began.   Yet, it was surreal, planning his last day with us and the celebration of his life.   We  grieved while we talked casually with him and each other  about food, preparations, programs, music.  He did not want a service but I and others told him the service was for those left behind, not for him.   We needed this for each other.  As strange as our conversations felt, looked, and sounded, for me it gave me a sense normalcy, just planning any other family event, right?  Though there were times it was awkward and I would think,

“Am I really talking to my brother about his death?” 

“Did I just ask my mom to bring her paper plates to my brother’s last dinner?  I am thinking of being green at a time like this?”

“Am I really using a toothpick to scrape the medicine out of the capsules for my brother’s last drink?”  

But, by planning for his death we were able to give his life the attention he deserved.  Probably over 100 people visited him in the last week, and he received many, many letters.  People were able to tell him how he impacted them, share stories and laugh.  If he had doubts at all that his life had meaning, those doubts should have been washed away by the downpour of love, gratitude, and kindness from those he touched. 

How wonderful is that?

Regrets begone

To my sister-in-law, niece and nephew (given to them 4/30).

I have been telling people what a gift being able to say good-bye is.  And that I have no regrets.  I was able to do and say everything I wanted to before he passed. 

I think about him every day and focus on the moments in the last couple days that bring me peace.  One morning few days ago it struck me.  I do have one regret.  I did not thank him for giving me, all of us, the gift of saying good-bye.  That morning when someone asked if anyone wanted to say something, I should have thanked him for letting us love him the way we needed to, which included being there when he left us.

Since I cannot thank him, I am thanking you.

Thank you. 

Thank you for sharing your last few precious weeks with him.   Being able to visit, help where I could, just sit with him was such a gift.  I know how lucky we were to be able to look him in the eye and say good-bye.  You let us share that with you and you did not have to.  A lot of people have told me not all families could have done what we did together.  Of course we would have preferred for the disease to not exist and for him to be with us for many more years.  But since we could not wish the disease away, being able to say good-bye healed as much as it hurt to say it.

Maybe there were times when you wished we would all go away and leave you alone.  But you never let it show.  And hopefully we were able to give you enough time to be alone with him, to be just the three of you (and baby Kai, woof). 

I love you all so much.

Happy Birthday, Brother

He would have been 53 today, his daughter is 18. 

I don’t think he liked being the center of attention, so sharing this day probably gave him some relief. 

Even though today was a good day…she did well in track, got asked to the prom, and a friend of mine had a baby today…it still felt sad.   Sadder than some of the other days in the last few months. 

I wonder if she will ever feel like she will want to celebrate this day.  If  years from now this day will always be tainted, even just a little.

When she was born, it seemed so sweet they had the same birthday.  Now, it will always be bitter-sweet.  I prefer white chocolate.

Niche

Today we gathered to put my brother’s ashes in his niche at the cemetery.   He rests in the perfect spot, close by where we lived as kids, overlooking the little town (well, it was little 40 years ago) we grew up in.  His daughter sang.  I could not even talk, I wanted to.  She sang.  Her dad would have been so proud of her. 

I thought today would feel like some kind of closure, help me move on.  It didn’t.

So begins the year of firsts…

Of course we have had the first day after, the first meal, first week, first day back to work, first month, etc. 

Harder still are the first laugh, first memory I wanted to share with him, first time someone asked me how my brother was, the first time I was able to refer to my brothers death without whispering.

Today is my paren’ts 55th wedding aniversary.  My sister that lives here and I will meet them for dinner.  It is also the last day my dad has radiation for his cancer.  So two reasons to celebrate. 

But my other sister who lives out of state won’t be there, and this is the first anniversary my parents  have had without him for almost 53 years.  The first time they have not had all their kids for 45 years. 

Crap.

Why the heck am I whispering?

For some reason, I could not talk about the actual day or moment of my brother’s passing without whispering.  It was the strangest thing.  I can talk very openly about the experience.  But when I would actually say something about the moment of his passing, I would whisper. 

I can actually talk about the moment without whispering now. It was bothering me that I was whispering.  It is not a secret, I am not ashamed.  Not sure what compelled me to whisper.  Thank goodness at least that part is over.  On to the next hang up.

My Brother’s Holiday

I thought a lot about him today.  Well that is silly.  I think about him every day, many times a day. 

But today is kinda like it is his day.  He was always full of pranks.  You almost had to think it was April Fool’s Day every day with him.

I miss his pranks.  His laughter. Him.

The Wanabe Hermit 5/5/1958-2/18/2011

We celebrated my brother’s life 2/22.  For someone who wanted to be a hermit, he sure knew a lot of people.  I think over 400 people showed.  What a testament to his life and how he touched others.  

The location was perfect.  A lodge on a lake the he fished and jogged around and in the last year still tried to walk around.  The large windows faced the lake and falling snow. 

My sisters and I created a slide show for him.  Our tribute. 

I could not talk at his service but I had the following read.  I took out the names as I am still not sure if I want people to know who I am.

I have been doing a lot of writing about my brother the last few days, one would think I am out of things to say.  Anyone who knows me will know I always have something else to say.

Sometimes when someone passes everyone talks about how wonderful and perfect the person was.  So let me start by saying he teased me constantly, tricked me over and over (I fell for the same prank more than once), knew exactly what buttons to push, and he was hugely competitive sometimes he would do anything to win.  He hating to lose to anyone especially his youngest sister and we had to play Boggle with a dictionary to catch the words he would make up.  When he realized he would never win that game he refused to play. 

Now that I have that out in the open, let me say he was wonderful and perfect.  He took me fishing even though he knew I would talk the entire time and scare the fish away.  When I was 15 he took me to college with him where I spent my spring break attending classes.  I did not know how much I would love that, but he knew I would.  When I was 18 and he was 26 he took me with him to one of his baseball tournaments in Eastern Washington.  When we got back I got sick and he stayed on the floor with me for three days and brought me anything I needed.  He always made me laugh, and laugh, and laugh.

We watched some videos of him this weekend and I was reminded of how vibrant he was, how much making others laugh and be happy was important to him.  I believe he showed how he loved others by his actions…baking, making us laugh, teaching us to fish, and remembering little details about us.  How hard these last few months must have been for him as some of these avenues slipped away from him.  How hard it must have been for him to watch our hearts break when he spent his whole life making us laugh.  But he never lost his sense of humor, making us laugh till the end, despite our tears.

We honor him with stories, memories and laughter.  His wife and kids will have no doubts how much He is loved and missed.  His wife brought out the best in him and I see many pieces of him in his kids.   They embody many of his qualities and will find their own way to pass on his legacy. 

There are so many things I do not know about my brother.  In this last year I got to meet him many times over through how other people see him.  

I am proud to be his sister.  He is beautiful.

 

 

I voted for WHAT?!

The Death with Dignity Law became effective in Washington in 2009.  I voted for it.  But actually going through this with someone you love can make you ask yourself, what in the world was I thinking?

When my brother picked an actual day to die, for a moment I wished the law had not passed.  In theory, death with dignity sounds like a good idea.  But when faced with the reality it was a shock.  I have to admit there were many times during the last few weeks I did not feel like I had any dignity, hence the temper tantrum with an empty peanut butter container.

But, it was only moments.  Brief and painful moments. At first I was ashamed of my reaction.  But, I think it was something I had to go through.  Get it out of my system so I could be there for him.

It was a beautiful morning. Some might find it inappropriate or strange for me to say that.  But beautiful it was.

This morning we gathered again.  My brother, his wife and kids spent much of the morning alone together.  Around 9:00 am, his chosen time, we circled him.  Those that wanted to spoke again.  

Their family dog said his own good-bye.  Once we all stood around my brother the dog ran down the stairs and jumped on the bed next to him.  My brother and his wife were holding hands.  The dog licked my brother’s hand over and over.  The dog jumping on the bed and licking are both unusual actions.  After a bit the dog stopped, looked up at my brother very intently for a few seconds, then started licking again.  After my brother drank the medicine, the dog then licked the hand of the volunteer who gave my brother the cup.  Almost like he was saying “It’s ok, thank you for helping relieve his suffering”.

One of my sister’s gave us all a heart-shaped piece of coral to hold.  I know we will all treasure these hearts forever.

His kids were amazing (ages 15 and 17).  They stayed by him, touching him.  After a few minutes he fell asleep.  And snored, which gave us some comic relief.  The muscles stiff for so long let go and it was wonderful to see.  It had felt like forever before we had seen him like this, relaxed with his back straight and his head up.  This disease had contorted him so much.  I am glad his kids were able to see him like this again.  That one of their last memories of him will be of him looking close to like he used to.

After awhile his breathing quieted.  His daughter leaned over and kissed his chest and he made a loud noise.  This was probably close to his last breath.  It was like her kiss released him.

This truly was death with dignity, a most appropriate name.  Despite our tears, anger at this disease, fear of losing him, anquish for his wife and kids, my parents, each other, our selves.  Ultimately I wish my brother never became ill.  But he did.  This is probably the most dignified event I have ever witnessed. I am so thankful I could be a part of it. I am forever changed.

Just Another Thursday Night (tomorrow we say good-bye)

Tonight we gathered for dinner at my brother’s house.  My dad cooked salmon, my brother’s request.  After dinner we shared memories.  Old memories, memories some of us heard for the first time, memories we have shared over and over.  We laughed till we cried.

We cried.  Tonight would be the last time our family would be whole.  Tomorrow my brother dies.  Tonight we gathered to say good-bye.  To create a new memory. To let him know how much we love him and will miss him.  And support this decision.

I don’t think any of us wanted to leave.  Maybe if the night never ended we could keep him here with us forever.  Like the last verse in P!nk’s song “Glitter”, we wished for an endless night, to hold the moon and stars in place and never let go. 

We are so lucky to have this tragic moment, to be able to say good-bye and have him say it back.   We all had a quiet word with him, I don’t know what the others said to him and I can’t remember all that I said.  We had a giggle when I knelt beside him and he said “Hello Lisa”.  We talked for a bit.  He told me he was glad we went to Yellowstone.  It was his last time there and my first.  I told him how much I love his kids and I would always be there for them.  I told him I love him.  I want so badly for him to know how much I love him.  A couple days ago we talked and I told him I did not know how to tell him what he means to me.  He said he knew how I felt about him.  If that is true then somehow I did something right. 

My parents clung to each other after their good-bye.  I cannot imagine their sorrow. 

Before we left he made us laugh, with a twinkle in his eye he claimed all the stories about him were untrue.

We come back tomorrow to see him one last time.

Translating love.

I am reading a book about the language of love, how people express their love for others and I think how people interpret how they are loved.  The book says there are 5 ways we express love:

  1. Affirmation
  2. Quality Time
  3. Gifts
  4. Acts of Service
  5. Physical Touch

My way, not sure yet.  Depending on the person I think I do all of these.

How does my brother express love, I think acts of service or quality time.   It is definitely not affirmations or physical touch (he is a one arm hug kinda guy).  He gives laughter, bakes, remembers small details about someone, helps in times of need. 

Right now we shower him in all forms of love.  We are drowning him with it, desperately trying to find ways to show we care, how much we care.   He is probably tired of it some days, overwhelmed with the level of attention.   But I can’t help thinking what a privilege we have to be able to do this.  Even if we are going a little overboard and annoying the crap out of him.

And while he is flooded with all our waves of love I also think how lost he must be thinking he no can no longer show his love.   He really hasn’t lost it, but he probably thinks he has.    He can no longer do as much for others, but he can still give quality time.  He feels like people must be bored spending time with him now.  What he does not realize is the time we spend with him now is so important, at least to me.  None of it is wasted.  Even if we just sit and watch episodes of Glee.  Every second is worth it, he is worth it.

He knows how much we are all crying, how that must crush him.  When he has spent so much time showing us his love by making us laugh, it must drive him crazy to hear our hearts breaking.

Pause for the cause.

Normally I am a very impatient person. I hate waiting for anything.  I usually multitask all day long, physically and mentally. 

I have patience in one place in my life, helping my brother.   Everything my brother does seems to be in slow motion.  It is so hard to watch him do things for himself, I just want to reach over and do it for him.  Not because I am impatient but because I don’t want to see him struggle.   Waiting for him to get in or out of the car, sit, stand, walk, feels like time has stopped.  He pauses in motion…does he need help, is he thinking of his next move, is he willing his limbs to cooperate?  I try to always ask first, “do you need help?”  I don’t want to assume.  Sometimes he says yes.  Other times he says he can do it so I wait till he is done.

Helping him is the most important task of that day.  It is the only task of the moment.  I not only physically wait, but my thoughts slow down too.  Everything focuses to being in the moment.  At times it is almost peaceful, everything I do and think in my multitasking world pauses.  There is so little I can do for him, but I can make him the center of my attention for that moment.  Then, when we are done with that task.  I step away, take a deep breath…and all my multitasking tendencies come back in a rush.

If it were possible I would patiently wait for him for him for the rest of my life.

Tantrum thy name is, me.

So, I had this draft post titled “Toss me a pillow, I want to throw a tantrum” for a while.  This was going to be a lot of venting, spewing about the unfairness of life and this sick disease.  I don’t want to handle this like an adult, make the most of it, believe all things happen for a reason.  I want to cry like a baby, roll around and pound the floor, throw things, break things, raise my fist to the sky and scream from the tips of my seven terrible toe nails (I had 3 removed as they were beyond terrible).

Before I finished the post, I actually had a tantrum. I yelled, cried, threw my shoe, yelled at my cats, slammed some cupboards.  I threw an empty peanut butter container on the ground and “yelled, we are out of peanut butter”.  Why was that empty container on the shelf anyways?  I really wanted the PB and J sandwich! 

It was a small tantrum considering how much is churning inside me, I didn’t want to scare myself or my husband with the ugliness inside me right now.  I even told my husband he might want to stay somewhere else for a while.  I am afraid of what might come out of me and don’t want to hurt anyone.

It is very possible my brother may not see March.  I know he is suffering physically, emotionally and mentally.  He can’t stand to be dependent on anyone, it is killing him.  And he does not want his teenage kids to see him this way.  I get it.  I do. 

He is ready to go.

How do I get ready to let go?

Half Day Fret Free

After the Christmas vacation everyone is back at work or school, which leaves my brother alone for several hours and leaves us all in a state of panic.  I think he likes some of the time alone…but there is a lot he shouldn’t do by himself….like walk or try to go up stairs. 

My husband is spending a few hours a day with him now.  We would like it to be more hours, but my brother wants some time alone, and for now while he can be alone I guess we have to let him choose.  We all still worry though, but at least it is a few hours a day less.  

My husband is really enjoying it.  He likes to help people and he loves my brother.  They laugh, read, talk, walk.  He takes him to some appointments.

When my husband said he would do it I burst into tears. I told my husband how much this means to me and my family.  We worry so much about my brother being alone. 

It means so much to me, I don’t think I can even tell him how much.  So much worry was lifted from my mind, the tension of wondering if he was ok.  Personality wise, they are probably a good match to spend hours together every day.  My husband is kind, helpful, caring, but also not intrusive.  The rest of us would probably be bugging my brother all day with questions and what we would think is helpful advice.  My husband has a way of making people feel good about themselves. 

I am touched more than I can say, and so proud of him.

I don’t need a hero, just my brother

When I was younger, and sometimes still today, my family would say “you are so smart”.  Sometimes it was a compliment, sometimes an accusation. I hated it.  Still do.  Sometimes my co-workers say it too. 

Doesn’t everyone want people to think they are smart?  Why is this a problem?  Because it comes with a burden and responsibility I did not ask for.  If people think you are smart they don’t think you need help, or you should have more tasks than others, or make fewer mistakes, people rely on you more as if they are more functional with you around to remember things for them, figure out things for them.  It takes the burden off themselves if they don’t think they have to use their brain if your brain is around.  I did not then and still do not believe I am as smart as people say.  Some people learn better visually, others by doing and others by hearing.  I am someone who can learn all three ways, sometimes I need all three ways.  That makes me adaptable but not smarter.  I think differently than others, have a different perspective.  That’s all.

I wonder how my brother feels when he hears people say he is courageous, that he is their hero.  He is very quiet about how he feels about this disease.  He doesn’t complain, yell, cry out at the unfairness.  I wonder, does he feel he can?  If after hearing how much people admire him, are in awe at his calmness and his courage does he feel he can show what might be seen as signs of weakness or despair?  Will he feel he has let everyone down?  Will he feel guilty that he is not as brave as everyone thinks he is?

He must feel fury, anguish, the unfairness, he must.  How can he not?   Does he feel a burden that he must be the hero everyone thinks he is?  Be strong and suffer silently?

Often times when a tragedy happens to a loved one, everyone talks about how wonderful the person was.  If we are to believe all the interviews of the family and friends from new stories and true crime documentaries, only the good, happy, wonderful, loving, perfect people are killed or die a horrible death.  Maybe that is comforting to those of us less than perfect.  We can tell ourself it won’t happen to us because we are not the perfect human that the victim was. 

Well, I love my brother to death, but he is no perfect person.  This is a good time to remember all the wonderful times, but also not lose sight that he has faults too, like us all. 

So I give him permission to not be a hero.  To let it out, to scream, yell, fall down under the unbearable weight of anguish, to be angry he won’t see his kids marry, be a granddad, that he won’t ever fish again, jog with this wife, play hoops with his kids.  That his family will be less…husbandless, fatherless, sonless, brotherless. 

Permission to just be and know it is ok.  We love him anyways.   Frankly, for me, it will make him more of a hero, and someone I would aspire to be and could be.  Human.

Big Girls Do Cry

I am a big girl and I definitely cry.  I cry over commercials, tv shows (I can’t watch Little House on the Prairie), movies, stories people tell, songs (Tie A Yellow Ribbon gets me every time).  I would say I am normally a happy person but I cry when I am happy, sad, touched, mad, frustrated, tired.  I wish I could say I am so emotional at the thought of losing my brother.  But I have always been a crier.  I CAN say, I am much more emotional thinking of losing my brother.  It hits me at weird times.  So far, it does not hit me when I am with him.  When I am with him I just want to be normal.  We talk, we laugh.  We even talk about his disease, we don’t ignore it.  He tells me he wants to exercise our states die with dignity process and it is like we are talking about the weather.

Until I get alone.  Then I sob. 

One of my sisters counsels terminally ill cancer patients and their families.  On our trip to Yellowstone she said the patients often tell her they think their loved ones don’t care they are dying, that they don’t seem to love them.  Why, because they are not crying.  Then the loved ones say, they can’t cry in front of the one dying because they want to be strong for them.  What strange people we are. 

My parents have always been criers too…well, my whole family is, even my brother in the past though he would try to distract us with jokes or teasing if he felt the urge (I think he used to do this when we were kids watching Little House on the Prairie, damn show).  They seem to be able to cry in front of him.  At Christmas one sister looked on the verge of tears for 2 days.  My parents have broken down in front of him and in front of all of us.   Still, it is shocking to see your parents cry like this.  I have seen them cry all my life, but not like this.  I have an image burned into my brain of my mom helping my brother into the car on our trip to Yellowstone, then covering her face and sobbing in the parking lot.  I wanted to enfold her and protect her from the gut wrenching pain.  There was nothing I could do, not even cry myself.  

Like I said, I always cry, have always cried, still cry, will cry, cry cry cry.  And I still can’t cry in front of him.

Pass me a slice of guilt please.

A friend from work whose mom has stomach cancer and will die soon asked me yesterday if I feel any guilt.   She does because her mom lives in Korea and she feels that if she had insisted her mom live with her in America she would have received better health care. 

I was shocked at the question.  I do feel guilt, but no one had asked me that before.  I feel like it should be me.  I don’t have kids and I probably have lived the least healthy life of my family.  If life were fair, it would be me. 

Every time I look at him I feel it.  Not that no one would care if I were gone.  People would.  But not like his kids will miss him.  Not like my other sisters would probably miss him, since he is the only brother.  Not like my parents would miss him, since he is the only son.  Not like the 200 plus people who came together to raise over 100,000 for his care and his kids.  Not like the people who came to fix his yard, his stairs, his bathroom. 

Not like that.

He never asks why him.  I ask myself every day, why not me?

What I Didn’t Know…

I first figured out his disease was fatal was when he was interviewed for a spot on the news in April 2010 and the reporter referred to his disease as MSA and fatal.  He was first diagnosed with Parkinson’s.  Then in 2009 the new diagnosis was Parkinsonism…similar to Parkinson’s but worse.  I had read up on Parkinsonism when he first became sick, worse than Parkinson’s but nothing said fatal. While I was very upset at the new diagnosis, my family’s reaction was magnified.  I didn’t get it.  Even told my husband, that I thought everyone’s reaction was extreme, and I am a very emotional person. 

At Christmas 2009 we all talked about him and to him.  We discussed symptoms, what’s worse, what’s better, etc.  No one called the disease by any name.  Like, if we don’t say it out loud then it won’t be true. 

Turns out he actually has MSA, Multiple System Atrophy, that manifests itself as Parkinsonism.  MSA is fatal.  I felt so many emotions all at once.   Now I know why everyone’s reaction was so much worse than mine.  I was devastated, but also angry and ashamed.  Angry that I had not heard the words “MSA” from anyone that I could remember.  Ashamed about how my reaction to the news must have looked the last several months.  I was upset and cried but I must have looked fairly calm to my family, like I did not care.  I did not even talk to my brother much about it…I figured he probably wanted normal conversations, not ones that focused on his disease.  I must have looked pretty callous.

I don’t know if when I was told someone mentioned MSA in 2009 and I did not hear it.  Or if when I was told the teller was so upset some details were left off.  Either way, to figure it out via a news article was shocking.

Wait, you are out of order

I think most people wonder what it will be like to lose a parent.  I know my family is lucky to still have both parents.  My closest friends growing up have lost one or both of theirs.  How will our family change? Will we still get together for holidays and just for fun?  What will we do with the empty place in our hearts.

I had not thought about losing a sibling before my parents.  Why? I don’t know.   Some of us have conditions that if not taken care of could be quite deadly.  But even with that I did not see any of us as vulnerable as my parents.  Especially our dad who has prostate cancer and was told 20 years ago he probably would not live 5 years.  Or my mom who rarely goes to the doctor so could have something serious and we don’t know.

But my brother will most likely die before my parents.   This disease will take him from us slowly and painfully.  Parts of me are still in shock.

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