18 Feb 2013
In 2011 I had the hardest couple of days of my life, but also two of the most beautiful. Don’t get me wrong. I would rather not have had the hardest day, but if it is going to happen, and it will, then let it be as it was.
If Google treated me right, ‘ohana is the Hawaiian word for family. Not just family relations, but those we enfold into our family, and those with whom we share a common bond.
I believe there are many lives encompassed by the ‘ohana born from the strangely beautiful tragic loss of Steve. It is not just the void left behind, rather it is the way we gathered to say good-bye. It is such a fragile bond we share, one that could easily have torn our family apart, separated friends. Instead I think our family is closer. We know what it is like to hold our broken hearts in our hands while we watch such a vibrant being slip away. We know. We can look across at each other, not say a word, just know.
Steve touched so many lives, many people I will never meet. He knew so many people but would not have considered himself social. You also share in this final farewell, this aloha. Many had a special moment to say a farewell. You also know. You too belong in this ‘ohana.
It was a beautiful day today on Hawaii…windy but beautiful. We ate one of Steve’s favorite meals. Steve would have loved this day.
Aloha, my brother. We will never be the same without you.
2/17/2011 Just Another Thursday Night
2/18/2011 I Voted for WHAT?
28 Jan 2012
I find myself still spending a lot of my day thinking of Steve. At work, in my car, at home, at the movies, with friends (sorry friends but you probably can tell I am sometimes not paying attention…not on purpose and nothing personal). I know I am missing what people say to me. Sometimes during the last year it feels like I don’t even understand English. Words sound foreign to my ears, and I often can’t remember words I want to say. I used to be able to multi-task but now I feel like I can only process one thing at a time. So I try to focus really hard, and I often have to ask people to repeat what they said or re-explain something. All that focusing is exhausting. About the only time I don’t spend a lot of time thinking of him is when I am with my family. I realized that just now as I was typing. That is very interesting and something I will have to think on.
So what consumes my thoughts? Where to begin? I think of the days I picked him up from work when he could no longer drive. The jokes he would make in the car, his excuses as to why he needed a vanilla shake. Or the day I went with him to try out walkers, that was surreal. I imagine him telling his stories and laughing. I see him teasing others, pushing buttons to get a reaction. Telling us girls he was afraid to ride with us in Yellowstone, laughing as he called out license plates. I remember so much laughter. I can still hear his giggle when we all would play “Socks” at the lodge and he would be in a sock missile battle with someone somewhere in the lodge. How much he loved to laugh and make others laugh.
I think of what an amazing person he was…how many people he impacted. He makes me want to be a better person…more accepting of others, healthier, active. And less of a complainer, definitely less of a complainer.
I can see him cooking or frosting cookies. Then I remember the last time I saw him frost a cake. It probably took him 30 minutes but he didn’t give up or complain. With his careful and methodical way he focused on that task. For every one move he made we all made many as we rushed here and there. If I was able to capture it on film he would be clear and defined, his movements slow but steady, while we all become streaks of color fluttering by him. Moving a lot but probably not really doing anything. But that is not what I want to remember. So I remember the time he gave Bethany the cookie dough covered in garlic, or the yummy snickerdoodles he made with a secret ingredient (not garlic). And the cinnamon rolls that make Christmas morning so delicious. Or the time he convinced me Crisco tasted sweet, like vanilla or ice cream (in my defense, I was very young). Or when he would sit with me when I was in elementary school and we would make bowls of ice cream and toppings and we would race to see who could stir them up the fastest, then talk while we ate.
When I relive these moments, he never seems to be rushing around. Even when he was healthy I don’t think he rushed. His mellow presence brings me a sense of peace. And he always makes me smile.
If I could I would wear a “Do Not Disturb” sign most of the day. I don’t want to be interrupted. I am busy. I am spending time with my brother the only way I have left. (does this count as complaining?)
Always, always when I think of him I tell him how much I miss him. And I hope he knows how much he is loved.
17 Dec 2011
Tags: birthday, brother, death, disabilities, disability, disease, emotions, family, feelings, good-bye, Health, MSA, Multiple System Atrophy, Shy-Drager Syndrome, siblings, sister
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.
25 Oct 2011
Tags: birthday, brother, dance, disabilities, disease, emotions, family, feelings, mom, MSA, Multiple System Atrophy, Shy-Drager Syndrome, sister
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.)
12 Sep 2011
Tags: cancer, dad, disease, emotions, family, feelings, Health, prostrate cancer, radiation, tears
Today I heard the best news I have had all year. And it made me almost sick. Believe me it was good news. Wonderful, joyful, knock me to my knees news, almost had to visit the bathroom news.
The radiation my dad went through earlier this year is working. If I believed in a god, I would be thanking him/she/it.
Thank you, thank you, thank you.
I did not realize how much my body was stewing on this. Whatever poison of worry that was running in the background of my soul was released. I was immediately drained, exhausted. I wonder if I could have used the sick bed at work to cry my eyes out? I have to sign a log sheet explaining why I need the room. I wonder if “my dad will live” counts.
He adds the disclaimer that he is not cancer free yet. Knowing dad, he probably wants to keep using this so someone will bring him ice cream. Don’t worry dad, you have your knee surgery coming and after that your other knee…plenty of opportunities to be waited on coming your way.
Oh, and love…lots and lots of love.
28 Jul 2011
Tags: Baker Lake, brother, butterfly, dad, family, feelings, giggle, good-bye, Hiking, love, memorial, mom, MSA, Multiple System Atrophy, parents, Shy-Drager Syndrome, siblings, sister, tears
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.
15 Jul 2011
So I was headed to a garage sale fund-raiser for a past co-worker who has leukemia and needs a bone marrow transplant. Little did I know this would trigger a near panic attack in my car in the middle of Tacoma. I think I will call it a tear attack, probably more accurate. Not sure why going to this garage sale would affect me this way…gripping my steering wheel, making funny sounds, trying to not lose sight of the road (do they make wipers for eyeballs?). After I parked by his house, I had to sit for a while. Breath deep, calm down, get a grip of my emotions and let go of the steering wheel.
Why, I wonder, did this visit bring out the tears? I still cry a little each day, and some things will trigger the tears like a song or a memory. But why this? I am getting pretty good at figuring out what will set the tears off. This was not expected, Iwas actually feeling pretty good. I felt like my body was not playing fair, ambushing me this way. Maybe the thought of another family feeling helpless in facing a disease and doing what they can to remain a family. He is lucky, I thought, that there is a possibility of a cure. Something we did not have with Steve.
I think any of us would have donated just about anything to cure Steve. While talking with my past co-worker I thought, I could become a bone marrow donor, help some other family, give them the chance at a cure we did not have. As soon as I got home I checked into what it takes to become a donor, only to find out a lot of the auto immune diseases automatically disqualify you. Me, they disqualify me.
Thwarted. Cue tears. This time, I am not ambushed. This time I know exactly why I am crying.
19 Jun 2011
I think my dad and brother were not just father and son. I think they became friends as well. Today we can’t gather around my dad and hope to make this day a little less painful. He is in Hawaii with my mom and one of my sisters. So I wish for the breezes to kiss his cheek, the waves to embrace him, and the turtles to protect him.
Hang loose dad. But not too loose, some of the beaches do have clothing requirements.
21 May 2011
We used to play a game called Tripoly. It is a combination of Michigan Rummy and Poker. Not a high stakes game mind you, just with nickels. We kept ours in a cloth bank bag. Every now and then when the family was getting together to hang out, someone would say “Bring your nickels”. And we would play for hours…in our family you have to play till at least some one wins one of the larger pots of money that builds up. My sister-in-law would pretend nearly every hand she had the winning cards. What a fun game, we would laugh and laugh. He would always think he knew what cards people had. Of course we all knew what my sister-in-law had as she usually showed the person next to her and say “should I bid on this?”
I realized today, that we probably will never play that game again.
So I did bring my nickels, to the store and cashed them in. There are many things that must go on with him gone…I must get up every day, remember to breath, go to work, celebrate holidays, enjoy being a family. But this, Tripoly, I can let go.
Good-bye Tripoly. Don’t forget the kitty and thanks for the memories.
17 May 2011
I stepped out of my box Sunday and started telling people I know about my blog. Whew that was hard. I think I drove my husband nuts…should I, shouldn’t I. Now, or later…how about now? Maybe later? I know I drove myself nuts on Sunday.
I typically don’t like exposing myself to people I know, not that I expose my self to strangers either. Don’t get me wrong, I talk a lot, share my feelings a lot, and brag about my family a lot. But if I am going to be in an exposed position, like talking in front of a lot of people, sharing the blog, singing Karaoke (which I will never do by the way) I prefer it to be to people I don’t know. People I don’t see or will not see again because they are strangers. In high school and college I even took lower grades on assignments to not have to get in front of the class. I could get in front of a bunch of total strangers….but not someone who I will have to talk to later, terrifying.
So seeing people after they hold my heart in their hands is uncomfortable, to say the least. The only thing worse that comes to mind is singing in front of others (I sometimes even mouth “happy birthday” instead of sing it).
I have to confess, I shared this blog for purely selfish reasons…it is hard to keep secrets, especially one that is out there for anyone to find. My dad uses this same site for his blog for goodness sake. Plus I was stiff and tense and I convinced myself it was the stress of keeping this secret (still waiting for the shoulders to relax). I kept wondering when I would get caught and how would they feel knowing I had shared this with some family members and not others. So, see purely selfish.
I don’t know exactly what I was expecting, but imagine my surprise when some thanked me for this gift. That felt weird. I should be thanking them for letting me unburden myself on them. Thank you, they said, a gift they called it…huh. That is a wonderful surprise. And lucky too since if they did not like this “gift” they can’t return it, re-gift it, erase it from their memory or even use it as a white elephant.
Lucky me to have such great family and friends.
09 May 2011
Tags: death, disabilities, disability, disease, emotions, family, feelings, giving, good-bye, guilt, MSA, Multiple System Atrophy, regrets, Shy-Drager Syndrome, tears, thoughts
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 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.
14 Apr 2011
Tags: brother, dad, death, disabilities, disability, disease, emotions, family, feelings, firsts, mom, MSA, Multiple System Atrophy, parents, Shy-Drager Syndrome, siblings
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.
13 Apr 2011
Tags: brother, death, disabilities, disability, disease, emotions, family, feelings, Health, MSA, Multiple System Atrophy, Shy-Drager Syndrome, siblings, whisper
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.
01 Apr 2011
Tags: April Fools Day, brother, Comedy, death, emotions, good-bye, jokes, laugh, laughter, miss, MSA, Multiple System Atrophy, Practical joke, Prank, Shy-Drager Syndrome, thoughts
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.
08 Feb 2011
Well, I took the plunge and shared this with my brother and his wife. I feel very strange. They shared the blog with their kids. That really scared me. I was not expecting that. My nephew texted me that the blog was good. That made sharing this worth all the anxiety.
Now I am afraid to write anything, like I have to behave or something. Do I have to act like an adult now, be a good role model?
I really just want to throw another tantrum. I don’t think I have that out of my system yet.
27 Jan 2011
Tags: attention, brother, death, disabilities, disability, disease, emotions, family, feelings, Health, heart, love, MSA, Multiple System Atrophy, parents, patience, Shy-Drager Syndrome, sister, Slow motion, thoughts
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.
15 Jan 2011
Tags: brother, dad, death, disabilities, disability, emotions, family, feelings, giving, Health, love, MSA, Multiple System Atrophy, parents, Shy-Drager Syndrome, siblings, sister, tears, thoughts
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.