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

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.

To share or not to share

I don’t know how much time we have left with my brother.   As yet, I have not shared this blog with my family or friends, and to my knowledge, they have not stumbled upon it.

I struggle with whether to expose myself to him, or anyone.  Is this the right time, is it even something I should do?  Will it bother people, will they think less of me because I am angry and frustrated.

If this were someone else’s issue I would probably quickly tell them to share.  I don’t know if I am as brave as I would encourage others to be.

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.

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