It's times like this that having an engineer's mind is a terrible thing. Just when I think the post-mortem review of my caregiver performance has finished, I start all over again. The good. The bad. The difficult choices. It always ends with a big dose of humility. BR wasn't mine to save. My job wasn't to keep him alive. It was to give him the best life I could. And as much as I wish I could have done both, it wasn't meant to be.
So with that in mind, I'm saying goodbye to The Wheel of Fortuna. BR and I had an amazing life together. If what we shared here was of any use to you, well then the blog has served its purpose. I will be sticking around the MS blogging world to share in your joys and lend support when you are down. To those who have supported BR and me through this blog, you have my eternal gratitude.
Friday, May 21, 2010
Friday, May 14, 2010
Amsterdam Postcards
Wisconsin and Illinois Postcards
Rain and construction made for extended hours on the road
Breakfast with KimmieG and Mike
In front of their Christmas Tree home
Shut your ...
BBQ and commentary
Thursday, May 6, 2010
Riding the grief roller coaster
It started out with tears of joy. BR and I finally found a way to take away his pain that worked.
The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.
Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.
And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.
The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.
Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.
In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.
From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.
Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.
The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.
Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.
And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.
The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.
Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.
In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.
From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.
Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.
Wednesday, May 5, 2010
Bobrobert's Memorial Service
When I woke up the day after BR's death, I put iTunes on shuffle and hit play, figuring that if I didn't like the song, I could always skip it. The first song it played was Barry Manilow's One Voice. BR often told me how much he loved this song. I tried to sing along, but kept falling apart with tears. I promised myself I would find a way to work it into the memorial service.
A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing Upon This Rock. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.
A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing Upon This Rock. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.
If in a simple carpenterThe second song was To Me, a duet by Lee Greenwood and Barbara Mandrell. I know, not the Barbra most of you were expecting. BR's friend Fran Kinman introduced him to this song long before I met him. While we were dating, it became clear that this was the kind of love he was looking for, and wasn't going to settle for less.
You see the Son of God
If you would choose to lose
When you could win
If you would give your life away
For nothing in return
Then you are where
My kingdom will begin.
To meReverend Emile was lined up to do the service and scripture readings, and Gail and Mary Katherine to play the prelude and postlude organ and piano. And as the day of the service neared, I realized that I needed to deliver BR's eulogy myself. But no matter how hard I tried, the things I wrote just didn't do justice to the life we shared together. I decided to focus on how he was always able to build and maintain a circle of friends no matter where he was, and on how much he loved those friends. With my sister Cindy by my side for support, I spoke of the dinner parties on Martel Avenue, the ex-boyfriends, and the neighbors -- many of whom were present in the Gilliam United Methodist Church that Saturday.
You are the hand that I reach for
When I've lost my way
To me
You are the first star of evening
The sun that warms my day
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
To me
You are the truth I've been living
Girl, I believe in you
To me
You are the love I have looked for
My whole life through
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
If I had to pick a message to highlight from Bobrobert's life, it would be to hold the ones you love close and tight, and to never stop looking for people to love.The service closed with One Voice. I sang the first verse solo.
Just one voice, singing in the darknessMy family joined me for the second verse and bridge.
All it takes is one voice
Singing so they hear what's on your mind
And when you look around you'll find
There's more than one voiceThen we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.
Singing in the darkness
Joining with your one voice
Each and every note another octave
Hands are joined and fears unlocked
If only one voice would start it on its own
We need just one voice, facing the unknown
And then that one voice would never be alone
It takes that one voice
It takes that one voice
Just one voice, singing in the darkness
All it takes is one voice
Shout it out and let it ring
Just one voice, it takes that one voice
And everyone will sing
Sunday, May 2, 2010
Celebrating Bobrobert
I'll be writing more about the wonderful memorial service and celebration when I return to Austin. But this was just too good not to share right away.
Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.
Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.
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