Witness

This entry is from The Lovely Wife.

1. It’s mid-January, eight days post-diagnosis. BH wants to record his time for the 100-meter dash, so under the grey sky we’re jogging around the high school track together. Then we split and I go to the end of the straight-away; he lines up at the other end. I raise my arm into the air as he gets set, I drop my arm and he’s off! BH starts with a burst, and then I see the drag to the left, as though a stiff leeward wind is pushing him sideways. BH’s right leg and arm, still strong, sinewy, slow down just a tad to let the left leg and arm stay in rhythm. In 16 point-something, BH crosses the finish line.

2. BH wants me to race him in the 400-meter run. I think several things: I’ve just eaten lunch; I’m still nursing our one-year-old baby and carrying extra weight; I know he used to beat me in the 400 in the past; I don’t want to be beaten by him today, and I don’t want to beat him today, on this day of recording and reckoning with the truth.

3. We’re out for an Indian dinner on a Friday night, pre-diagnosis, with our baby girl in tow. Our son is elsewhere, enjoying an evening with his best friend and their former nanny. Among other things, I recognize a teacher from the middle school sitting at another table. BH and I are talking, eating, drinking -- sploosh! A throatful of water sprays out of BH’s mouth and across the table into my face. I feel humiliated, though I know it was unintentional. BH apologizes. We don’t yet have any idea what it means, or that it means anything.

4. Maybe a month post-diagnosis, BH and I want to get some exercise, but our 4-year-old son is home from preschool. We decide to take him in the jogger-stroller. I tire pushing his 43 pounds around town, but BH finds a small hill and sprints up, pushing the loaded stroller in front of him, faster than I want to go even without the stroller.

5. One of many attractive things about BH is his voice -- warm, jovial, resonant, quick in wit and scorn. I hear a new layer of nasality, airy, less grounded. BH has expressed to me recently how his slowed tongue and sometimes slurred speech frustrate him, and how infuriating conversations on the phone with “customer service” are: those who serve always want to rush ahead, finish a sentence for him, try to solve his problem before they’ve let him finish his description of what that problem is. BH’s strategy in the face of such interruptions has always been to start again at the beginning of his thought, exact a tax of having to hear the whole explanation again. Only this time, BH has to suffer interruptions again in just about the same spot every time, and he cannot finally get his whole thought out. Soon he hangs up in disgust.

6. Mid-October 2005, a Saturday morning, we’re going as a family to the Fire Department Pancake Breakfast and Open House. We’ve found a parking space in the lot near the fire station and have safely, slowly, wound our way past other cars to the entrance nearest the pancake line. We walk down the brick sidewalk to the ever so slightly slanted bottom of the driveway. There’s a one-inch drop-off; I’m just turning around to say to BH, “Watch your st-....” BH’s right leg, the now “stronger,” but not “strong,” leg, doesn’t feel the ground just where he expects it, the slight difference in elevation throws off his balance, and his legs go out from under him. He lands on his butt and back; luckily he doesn’t hit his head. BH has just arrived at the fire station looking like an A.M. tippler. He gets up and limps into line with us. I know he doesn’t want me to rush to catch him as he’s falling; he also doesn’t want me to rush to pick him up. He wants time to recover from the shock of the fall. But I wonder what kind of impression this is making on our kids, that Mommy doesn’t run over to help.

7. In bed BH asks, “Can you move my left leg?” I reach around and grasp his left ankle and foot, and I’m shocked, horrified. BH’s left leg is cold, not even clammy, just reptile-cold. BH, who has always been a furnace, with warm hands and cheeks in even the coldest weather, has a limb that feels like death.

8. For BH the house feels colder these days. He wears his thickest padded corduroy jacket almost constantly. He limps slowly, speaks slowly. His angular facial features and his dark-brown eyes, his gait and stooped shoulders and veined hands, all remind me of my grandfather -- in his nineties.

9. BH and I walked to our neighborhood polling place today, two blocks away in a city park. Our daughter rode her tricycle with us. We walked in together, then got split up in line by a cell phone call I somehow couldn’t end. BH finished voting first and left to wait for us just outside. I came out and said I would stay at the playground with our daughter for a little while, so BH decided to walk home alone. We watched him go past the green lawn, past the basketball court, and up to the pool building. There he had to lean against a wall and rest a minute before continuing to the end of the first block.

Four Weeks Ago

A month has passed since BH died. There was a memorial service. We’ve jumped into that dark pit of sorrow and begun to climb back out. We’ve spent time and tears with friends, family, anonymous acquaintances and people we would have never met except for BH. This has been particularly touching.

I guess this experience has made me stronger. It has made the pain of my body more trivial. It has made the care of relationships more powerful. Whether sitting on the plane, cutting back the vegetation in the yard, playing or writing music, these quiet times, BH is still a big part of my thoughts. I don’t know how long this will continue. I’ve seen the children, however, both at the memorial and around town, running and laughing, doing what they do. And the flowers on our tree have bloomed again, as they do every February. So I know life goes on. I just miss the one that is gone. And maybe more I’m just emptied by a disease that destroys the body while trapping the mind. No one deserves that. You. Me. BH. Anyone.

The following is the eulogy I spoke at the memorial service. There were, of course, additions, editorial license, a couple other stories, a tissue break or two. Some of these are just notes to remind me. Other parts I read verbatim. One part is new. But it is true in its essence.

Welcome to everyone. Expression of love to TLW and the children, family, and all the friends who are here and those who can’t be here today.

First, I don’t have any special market, any ownership, any special hold on grief. Yes, I was BH’s good friend, but no better than anyone else. I was his best man at their wedding. But that doesn’t make my relationship any more special than yours. BH touched a lot of people and we all feel the loss of a friend, a colleague, a son, husband and father right to the core. And we all remember when we first heard, via email or phone call, and we had to learn what ALS really means. We’ve all been through this. We can’t deny that it is a life changing experience.

A little history of our friendship.

BH and I became friends working in the kitchen at the dorm in 1982, Washing dishes. Cleaning lettuce. Sadie would call at 6 a.m. She knew the guys who needed to make a few bucks. We were both skinny young dudes wearing jeans and growing their hair. Both English majors. Summer of 1983 we spent the summer living as Princes in the Castle. A beautiful summer. Went to watch shooting stars in August. The Perseids. BH said the clouds would get in the way. It was the Milky Way. We went to the Sierras a couple weeks later. Had a bear come into the camp. BH wrote a poem in his book about the trip. I left for England. We kept in touch. I needed to move to back to Berkeley. We shared an apartment. I brought back post cards for my friends, just copies of paintings I liked. I brought BH a postcard of the Lady of Shallot. We hadn't talked about it. When I went into the room we shared the same poster was on the wall. We laughed.

We were the guys who took that couch from the street. Brought it home on our bicycles. Our apartment had so many roaches. We didn't have beds. Instead, we slept on our back pack matresses and our sleeping bags on the floor. Two skinny rat bastards. I worked at a pasta deli, so we always had food. A year later we bought Mac’s. We connected to each other with 300 baud modems. Do you have any idea how slow that is?

BH and TLW, married, crying at wedding, Love.

I remember when B called me that he had met her. He knew. Many people may have been at the wedding, but others were not. We told the stories of how they met. But what I remember is that while saying their vows, BH couldn’t stop crying. It is hard to express the depth of love more than the actions he exhibited that day, in front of friends, family and his lovely, beautiful bride.

BH just loved being a Dad. He knew so much and wanted to teach the boy and girl. about everything. Chess, rockets, music, bugs, rocks, spiders (he didn’t like those much as the years went by). To be fully empowered to do whatever a person could do. It is one reason he was so strong for so long. To be with his family, watch his children grow.

BH in Space: There are a couple concepts I want to tie together.

First, about BH always being right. TLW can tell you about their ongoing argument about how to position the outside rear view mirrors. BH believed that you shouldn’t see the side of your car, because then you used the mirror more efficiently. I don’t know whether it was because she agreed or it was just easier than listening to him rant, that TLW moved the mirrors outward. Yes, you can see more field of view, but you can’t relate it to the side of your car.

I think of this in relation to BH’s love of model rocketry, Star Trek, of going into space. I, for instance, need to know where I am when I’m driving. So I keep the mirror turned in. It gives me a reference of my truck with all other things. BH didn’t need that reference point. He could exist floating in space. He was his own reference point. Self referential. A solo, unique character who we knew in part, but never all the parts.

Not to say BH was a saint. Did you ever have him go into investigative journalist mode on you? I was involved with the University for a while. I could hear it in his voice. Time to go now, BH.

Something that makes me mad
One thing that bothers me is that he was supposed to remember things. My memory isn’t that great because of a few hospital stays. He was supposed to remind me of things. Now I worry that I won’t even know what I’ve forgotten.

But no matter what I’ve forgotten, I’ve learned even more. I learned how to make yogurt in the water heater closet (that was not good). I’ve learned about bean and cheese burritos. Strength and compassion. It has led me to think more about Love and Brotherhood. Of doing the right thing with no expectation of reward. While I wish I could have been the bay area, it has taught me compassion when nothing else really matters. To be kind. To show love. The rest is details.

This is a little prayer that passed my way.

It is hard to sing of oneness when our world is not complete, when those who once brought wholeness to our life have gone, and naught but memory can fill the emptiness their passing leaves behind. But memory can tell us only what we were, in company with those we loved; it cannot help us find what each of us, alone, must now become. Yet no one is really alone; those who live no more echo still within our thoughts and words, and what they did is part of what we have become.

We do best homage to our dead when we live our lives most fully, even in the shadow of our loss. For each of our lives is worth the life of the whole world in each one is the breath of the Ultimate One. In affirming the One, we affirm the worth of each one whose life, now ended, brought us closer to the source of life, in whose unity no one is alone and every life finds purpose.

Celebration
So we are here to celebrate BH’s Life. To remember in what ever ways we might this friend of ours. Who was taken too soon. To remember his passions, his family, his strengths. He is a part of each of our lives. And we were all a part of his. I’m going to miss him a lot. And you are going to miss him. And TLW and the kids. We’ll always, as a community of friends, remember to include BH’s family in our lives.

I couple years ago I asked him if he was done yet. BH said “No.” I said “Ok, so Ride it until the wheels fall off” and BH said “Yes.” In the end, the wheels had fallen off. He was strong and brave beyond understanding. And it was just over. It was time to rest. I’ll miss him. You will miss him. But we won’t forget him. That’s for sure.

A celebration today

Today was a memorial service, a celebration, of BH. There must have been over 150 people. I'm now hearing 200. A wonderful person opened the ceremony. An old friend relayed distant messages and shared life experiences. Lovely wife made a few comments. Sisters and friends read poetry. I gave a eulogy, as did another fellow. Beautiful guitar and mandolin music was played. Friends and family got up to tell stories. There was a Statement of Hope, followed by a tearing version of "Flowers of the Forest" played on bagpipes. People brought food and drink, so we all talked and ate and talked and ate some more. I'll try to follow up with more details in the next day or two. But today was a good day, a hard day, a tiring day, a touching day.

Not sleeping... with tears

I got the email yesterday that the memorial service for BH will be the weekend of Feb 23rd. I wish I could tell you where, but you know that story. It will be a pot luck, with bunches of people getting together to talk story, swap tales and the like.

I live far enough away from the Bay Area that it is a bit of work and planning to go. I lay on my pillow, bouncing back and forth the alternatives. Not to mention, what would I say. Our adventures, the lessons we learned, to our spoken and not yet discovered plans for the future. And I realize, in the dark, with the cat demanding stillness and warmth, that I've had tears falling back my face for an hour. Sleep won't come easy tonight.

And still they fall...

Message from an Angel

This message comes from someone who is helping the family. A true angel. The names have been removed, but it is the status of the world for BH’s family. I share it with you so you know that there is a community of love surrounding the family, in addition to all you beautiful people.

The Lovely Wife wants to thank you for your outpouring of care, love and support.

Many of you have inquired about TLW and the children. I've been checking in with her daily. There is no one way I can describe how she is doing. I can say however, that from what I observe, she is facing the reality of BH’s death with courage and a willingness to meet both the pain and the freedom his death has brought about. She is taking good care of herself while being very present with the kids. Unfortunately she did pull her back and has been having some back spasm, but is caring for it.

Friends and family have been around making sure she is not alone. She's gotten tremendous help from many of you with meals, shopping, house cleaning and plain old love.

The children stayed home Monday and Tuesday and on Wednesday the darling boy went to school. When I picked him up from school, there was a lightness about him. I think that knowing that even though his life is forever changed, some things like good friends and school are still there and normal and won't be taken away.

Forgive me if I state the obvious, but for those of you who do see the family or will in the near future, please take care not to talk to the kids about BH’s death unless they initiate the conversation, (and perhaps ask your kids not to either.) At the moment DB feels that his father's death is a private matter (I am quoting his words.) As adults we know we can't protect him from the reality of how public it really is, but for now, if we can just allow him to have a little more time to dictate the pace in which this information seeps in and the time he needs to process the fact that his life is forever changed-it will be a little gift we can give him.

The family took a trip to Santa Cruz for a couple of days with a good friend of TLW. They rented a cabin on the beach with a hot tub. If anyone knows a good massage therapist in Santa Cruz please let me know. It would be wonderful if she can get one or two massages while she is there.(Please let me know by Sat as they are only staying until Sunday.)

Many of you have been asking about making a donation to the family or to acollege fund for the kids. I will give you more information about how to do this in the next week or two.

Arrangements are still being made for the memorial service and we are hopingto sort it out by early next week. I will let all of you know as soon as I know. It looks like it will be on either the weekend of February 23rd orMarch 8th.

With much love,
An Angel

I'll keep you all up to date as things settle down for the family.

Amazing the blogosphere

I've always treasured my friends. Those near and far, current and over the years. But I never spent time with blogs because life is too busy already. Until BH used it to keep us informed.

Now there are people around the world who know the story of my sharp elbowed sometimes cranky usually brilliant friend and his wonderful wife and beautiful children. I'm torn between being thankful I'm not alone in my grief and the thought that you have had to experience this pain as well. But I know that care and empathy, being kind and showing love is healing.

If I could just hold your hands, look into your eyes and say "Thank you."
So I do.

Finally at Rest

Last night, at 8:40 p.m., BH peacefully died surrounded by family. I may have more to say later. Maybe not. I don't feel like writing a eulogy today.

Changes we make in our lives?

There is so much kindness, good will, blessings and honesty in the postings at brainhell and here. We all read it, say it, feel it. I can't identify specific changes. But I wonder if the experience of reading brainhell, of watching a friend wither away, of extending kindness, changes me at a fundamental level. Those things I've done for BH I've never felt as an obligation, but as part of our friendship. And now I ponder: can I check in with myself, carry that approach, those deeds, to others? Probably not as intimately. But nothing should stop me from wishing happiness, health, an absence of pain, a wonderful family and loving friends to anyone.

How has reading BH influenced you?

Things are slowing down

Friends and family of BH are putting together a memory book. We are writing bits about his life, our times together. His lovely wife is reading it to him as he is awake or sleeps. It will go to his children, when they are a bit older, enough to understand a bit more. It is called "A Celebration of B's Life." My plan is to print, somehow, the entries on Brainhell.blogspot.com to include, so his family sees the outpouring from folks who didn't know each other in person, but who BH touched through his writings, shared with us all.

Only because it feels right

BH is a friend. We have all been part of his life with ALS. Even as anonymous viewers and posters, we have been touched by BH's writings, his opinions, his love for his wife and children and the challenges of caregivers, breathing, emergencies and the loss of a body containing a vibrant mind.

I visited BH last weekend and things looked pretty bad. He is worn out. Worn down. Nothing works. And he is exhausted. We had a tearful good bye. He struggled to type "ron bye bye." I wiped the tears from his eyes. I don't know, but I doubt I'll see my friend again alive.

We've been friends for 25 years. I was his best man. But all of you have brought BH, his lovely wife and his dear children into your lives. So I hoped that in case BH's life comes to an end, that when he can finally rest, that this blog can be a place to celebrate his life, your life, our lives. We live on through the memories of others. You are a wonderful community of love, worldwide. Amazing.