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

A time to dance

It’s funny.  The things you remember.  I went to see the new Footloose  with Holly.  I love the original movie.  The dancing and music really stand out to me and make me want to dance.  It is hard to listen to the title song and not want to shimmy and shake.

I totally forgot the premise of why dancing was outlawed in the movie.   The death of a son, brother, friend.  I have to admit I was a little frozen for parts of the movie.  I forgot the happiness in the movie was preceded by sorrow that tore people apart.

The last few weeks have been rough, but also special.   Birthdays, basketball games, I got to take Kellen to be fitted for his homecoming tux, Maddie off to college, Kellen breaking his leg (missing his homecoming).   My mom and a sister had milestone birthdays this month. 

I feel an intense need to be with everyone on their birthday this year.   And true to my nature I have been trying to figure out why. 

Is it because I don’t want any of us to feel our birthday is less than?  That would be rather egotistical, like I can really make up for Steve being gone.

Am I trying to figure out what it will feel like?  Later this year it will be my turn.  My birthday missing Steve.   So, what does it look like, feel like?  Maybe I can lessen the blow by easing into it, watching other birthdays.   I hope that is not what I am doing, it is creepy and voyeuristic.

So what does this have to do with Footloose.  This movie is about creating a time to dance, giving ourselves permission to dance, even after a tragedy.  One of the memories of Steve I think of a lot is him dancing at my wedding.  And by dancing, I mean he turned in a circle.  All the men lined up and danced one at a time to “I’m too sexy”.  When it was his turn, I wondered what he would do.  I am sure this was not in his comfort zone.  But he went with it.   He danced, and by dancing I mean turned in a circle.  I think he even kept his hands in his pocket.  That simple turn he did meant a lot to me.  This was him dancing. We laughed and laughed.  He could always make us laugh.

I am settling on wanting to help make it as happy a birthday as possible.  I want us all to be able to dance on our birthdays. 

(And I am probably watching.  I prefer to call it being observant over voyeuristic.  It’s my blog so I can call it what I want.)

In Your Living Years

Why, I ask, am I here?  In your living years you asked me to go to Sun Valley with you and your family many times.  I never did.  Why…Look at the name, “SUN” Valley.  I knew it would be hot.  You know I don’t like the heat.  Or hiking, biking, running, tennis, any number of other things to do in Sun Valley…any kind of exercise really.  I never could figure out why you wanted me to go.  Probably to share the price of the condo?

But here I am, in Sun Valley.  Hiking.  In the sun.  Not in your living years.  Why?  To help spread your energy in this place you lived, laughed, loved.  I wanted to be part of this…I really did, but I did not want to hike to Baker Lake.  Before you left us I asked if you would want part of yourself to be taken to Yellowstone.  That I could do, I can drive there.  No hiking required.  But no, you just wanted to be left at Baker Lake. 

I was not sure I could do this hike.  I came, but I expected to either wait at the house for everyone to get back…or maybe try to hike but stop part way and read will everyone came down.  A couple of days before the hike I had a dream.  In the dream we were trying to get you up a river bank.  We laughed so hard because you kept making jokes using one liners like “with a little help from my friend” or “lean on me”.  The whole dream was pulling you, and laughing so hard we would fall back down, in the mud.  I woke up laughing.  You motivated me to do try the hike I was dreading so much.

I talked to you as I hiked, relived memories, and I cursed you a few times.  I really don’t like to hike.  Give me strength to finish Steve.  Why in the hell did you choose this place? Remember when you took me to college with you?  How about our joke when you would call me on the phone and ask me “Who is this?”  Another fly just bit me, thanks Steve.  I miss the way you tell a story, the way you giggle.  I hope you know how much I love you, look, I am hiking for you. The dream of you laughing was such a precious gift.  Help me finish this hike.  I hope I brought as much joy to your life as you brought to mine, still bring to mine.  I miss you, really I do, but this lake better be worth it.  Was that another fly?

The hike was worth it, eventually.  And the lake was beautiful.  I took many breaks to catch my breath but I didn’t mind stopping so many times.  Each pause surrounded me with butterflies.  And huge biting flies, which I tried to ignore.  There were butterflies, everywhere.   When I finally got to the lake I imagined you would have giggled a little at how long it took me.  Not a giggle to mock me.  But still a giggle.  Bec and Polly said you would have been proud of me for finishing the hike.  That was interesting to think about.  I don’t know if I ever made you proud.  Were you as proud to be my brother as I was to be your sister?  That would give me something to think about on the way down…which also took me awhile.

Leaving you at Baker Lake fitted.  You will be at peace, forever fishing.  As Ken went out on the lake to spread your ashes there were times he almost looked like you.  I hope you were with all of us as we wrote our messages to you on rocks and tossed them in the lake to forever with you.  I hope you heard Maddie’s song to you, it was perfect.  There were many people there to send you off, and many more that wanted to come.  In your quiet way you had a huge impact on so many.  The generosity of Polly, Kellen and Maddie is amazing.  To let us all share this moment with them.

I did not like Sun Valley.  I am glad I went though as I got to know more about you.  Polly pointed out all the things you guys would do here.  I was struck again with how much you truly and completely lived.  In your living years, short as they were, you lived life more fully than most people will do in several lifetimes.   Even the days you said good-bye to everyone were full of laughter and living. 

In the living years without you, I will try to never forget the life and energy within you.  I will always try to make the most of my living years.

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?

Can it be a Happy Mother’s Day?

Even though we didn’t talk about him much, he impacted us today.  We are a close family but we don’t always spend days like mother or father’s day together.  I guess we don’t feel the need to get together on a commercial holiday just because we are supposed to.  We do cards, sometimes small gifts (mom always says not to get her anything but we don’t always listen), or we call.  But we didn’t usually plan to get together.

But this year my sisters and I took my mom out to lunch.  Funny, I am not sure we have ever done that for mother’s day before, or at least not for a very long time.  I wanted to say to her “I am sorry”.  Sorry that you lost a very special son. Sorry for this loss that we can never fill.   I know my mom loves us all equally.  But there is probably nothing we can really do on a day like today to make it better.  I don’t think I even said the words “Happy Mother’s Day” today. 

I guess my brother gave my mom black licorice and biscotti every year.  Unlike a lot of men, he probably shopped for it himself.   Last year I took him shopping so he could buy his wife a birthday present.  Even though he could not get  there without help, and he could barely walk, and he could not wrap it himself, he still wanted to shop and pick out the present himself.  So my sister-in-law gave my mom some black licorice and biscotti today.  That was so incredibly sweet for her to remember and think of my mom today.

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.

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.

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.

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.

Who loves you baby?

So we got back over a month ago.  Yellowstone was wonderful.  The weather was super the entire time. 

It was strange though…I have never traveled with a person with disabilities.   It was probably strange for him too. 

On the first day traveling I noticed that we were all battling over who could help my brother the most.  Who could buy him the treat he wanted, who would get that item for him, etc.  I took a step back and thought, what in the world are we doing?  It was like a sick competition. 

We are all so desperate to help him but I wonder how much of it is helping him and how much is helping us to feel better.  Maybe we think he will know how much we love him by how much we help him.  Maybe it makes us feel less guilty for being mobile and less dependent on others for basic living needs.  Whatever it is, once I stepped back and saw what we were doing I stopped.  At least I think I stopped.   I want so badly to make it better, and there is so little that will.

I think more often than not he just wants to be left alone, at least for now.  He can still do a lot for himself on some days.  But he never knows from day to day, or even during the day if he needs help or not.

http://birdsalltrip.wordpress.com/ link to the blog about our roadtip

 

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