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.

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.

If in a simple carpenter
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.

The 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.

To me
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

Reverend 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.

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 darkness
All it takes is one voice
Singing so they hear what's on your mind
And when you look around you'll find

My family joined me for the second verse and bridge.

There's more than one voice
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

Then we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.

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

Belcher Postcards

These last two photos are of Dede's place of work. She is nicknamed the "Dumpster Diva" for her ability to rescue discarded items and beautify her surroundings.

BR's brother preaches about love

In this sermon, BR's older brother John talks about how important love is, and how he wishes he had been able to more fully open up his life and his heart to his brother.

John - Bobrobert was so incredibly proud of you and all you have accomplished. And although he sometimes said you were being "made for TV," he never once doubted that you loved him with all of your heart.

Sanctuary | Apr 18 | 11:00 from White's Chapel UMC on Vimeo.

The next phase

BR just got a beautiful batik scarf from Gina in some of the new colors she is using. Makes a lovely IV pole drape!

I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.

I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.

He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!

The business of dying

Sorry I'm not much for words right now.

Tuesday, BR had a bit of a rally, charming his guests during his moments of clarity.

Wednesday has seen him sink deeper into the illness. I can count the number of true interactions with him on one hand, and they were no more than a single back and forth. His heart rate is hovering around an unsustainable 120 bpm.

I made a list of the number of accounts and possessions that are in BR's name -- there are only 4. I deposited his stock certificate into his brokerage account, and hope I can liquidate it soon. Then I will be able to close it, his bank account, and his credit card. His mother will be given the meager proceeds, as we had planned.

I also spoke with the hospice social worker, who put me in touch with a nearby funeral home that will handle the cremation. After discussion with his mother and aunt, we have decided to buy a magnolia tree, and plant it on their property in Louisiana, using his ashes as fertilizer. That way he will always be close to his family, and his story can be passed down to future generations.

His aunt also generously offered to host a memorial party at her home in Belcher, and I have accepted. I want to make it one they will talk about for decades to come. Tastefully, of course. :-)

Calmer nights, busier days

"Turn that off. I don't think I can handle this and Barbra Streisand." BR's mother, Dede had arrived with tears in her eyes, followed by her sister, Beth.

BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.

We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.

BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"

Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.

The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.

I need to wrap this up, but not before thanking Herrad, Richie, Anne, Stephany, and Patrick, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.

And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to http://gallery.me.com/bobrobertmckellar/100173, and click the "Upload" button in the toolbar.

2010 Birthday Guilty Pleasure #8: FarmVille

This one is really embarrassing. BR's mama is so farm-proud. Her Facebook profile is filled with "I fertilized this" and "I found these eggs." My initial reaction was, what do you get out of it? Produce? Money? Prestige? Notoriety? The last two seem to be the primary motivators.

BR started a farm, but it soon became clear that he wouldn't be able to keep up with it on his own. Crops wilted. Gifts languished unopened. I reluctantly offered to check on it a couple times a day to help keep it moving forward. Big mistake. My name is steve, and I play FarmVille.

Our big thing is to delete everything from time to time and completely rebuild from scratch. The feeling of a virtual purge is very therapeutic.

BR's iBOT takes a licking and keeps on ticking.

The iBOT repair man arrived on the 22nd to assess the damage to the iBOT after BR's fall down the front steps. I had noted that the headrest was bent, and that a cast aluminum panel that held the right leg rest in place had cracked, leaving the leg rest usable but unstable. After describing the incident to the repair man, he gave the chair a once-over. To his surprise, the two items I noted for repair were the only things he could find wrong as well. Whew! That thing is really built like a tank! He ordered the parts and returned the following Wednesday to make the repairs -- just in time for us to load up in the minivan and head to Louisiana for Nanny's memorial service.

BR with Sarah-Beth in Belcher.


Jordan and Steve on the couch.


It was great to spend the weekend with family. Jordan joined us for the road trip, and got to experience first hand the brand of love grown only in Belcher. Food and drink were plentiful, and I took time to perform some routine maintenance on BR's mother's and uncle's computers. Uncle Mickey's had gotten into a state where antivirus protection failed to start, and Windows patches failed to install. I found the solution in Microsoft's knowledge base, and after a few hours of downloads, ACL resets, and Service Pack installations, the computer rebooted without any errors and protected with antivirus.

When we returned to Austin, we were greeted by our friend Jeanne. She had flown in from Oakland to spend some of her spring break with us. We love Jeanne, and hadn't seen her since her 50th birthday celebration at Jazz Fest in New Orleans last year. She was a delight as usual, and we took advantage of the beautiful weather by spending Tuesday walking in the neighborhood park, and eating a Polynesian-Mexican meal at the Hula Hut on Lake Austin.

Jeanne and BR at the greenway waterfall


I return to work tomorrow, so I spent today planning our Easter Chapeau party on Sunday. I also made a run to the Home Depot to pick up a 6"x6"x8' post to protect BR from the front steps when he's on the porch. With the post in place, BR will be able to spend time unsupervised on the porch once again. Yippee!

Front steps before ...


... and with the post in place.

In Memorium: Doris "Nanny" Pearce (1920-2010)

Nanny was BR's maternal grandmother. I first met her in the early 1990s at BR's cousin Billy's wedding in Dallas. She was energetic, observant, outspoken, and as BR warned me, somewhat judgmental -- a warning I had managed to forget as I sped from work to their hotel on my motorcycle, still wearing a "Sorority Girls from Hell" t-shirt. Not one minute after greeting her, I heard her read the t-shirt out loud, and then let out a laugh that at the same time was warm and welcoming, and yet said "can you believe what this idiot is wearing?"

Nanny was a picture of southern gentility. She had high expectations of her family, which occasionally lead to awkward secrets. In the early years of our relationship, BR was adamant that Nanny was not to know that he was gay. After about the second time I joined him on a trip home to Louisiana, Nanny decided that I would be a perfect boyfriend for his cousin Paige. This matchmaking continued until shortly after BR and I married in 1992, and he decided to come out to her. Paige, however, continued to refer to me as her "backup boy" for many years to come.

Nanny was frequently concerned with BR's appearance. The years when he would grow his hair long, she would encourage him cut it to a respectable length. This prompted a Christmas present one year containing nothing but his hair.

In the years after the passing of her second husband, Frank, Nanny became increasingly introverted. BR's mother Dede moved into a home built on Nanny's property to be close by. Between her, her sister Beth, and their families, Nanny was lovingly cared for through her passing Thursday morning.

I think I'll get a haircut today.

Jordan's first motorcycle lesson

Saturday was Jordan's 20th birthday. When I asked her what she wanted to do to celebrate, she said she wanted to learn to ride the motorcycle. She was quite successful.

Ready for the next round

What a refreshing bit of travel. With BR safely in the care of Jordan, I was able to focus on work in California for a week and family in Illinois for a weekend. However, as the time grew closer to head back to Austin, the call from New Orleans grew stronger and stronger. "Carnival." "Carnival."

Ring. Ring.

BR: Hello?

Steve: Hi Bobrobert! Everything going OK?

BR: Fine. How's the family?

Steve: Great! Mom's doing so well, She spent the night here last night, and thinks she'll be out by next week.

BR: And Hope? How cute is she?

Steve: Adorable. A little fussy today, but that's probably just because she's not used to having so much commotion around her. Hey, I've got a question.

BR: The answer is yes.

Steve: Yes? You don't even know the question.

BR: Yes, you can go to New Orleans. But for every dollar you spend on this side trip, I get to spend one on myself.

Steve: Deal!

BR: And be sure to text me lots of pictures.

[Note to T-Mobile: Add extra 3G capacity to the French Quarter during Mardi Gras. It's frustrating to get an unusable 3G signal.]

Adding those extra two days to the trip was the best idea. Two days for myself without worrying about BR or family. I came home happy and ready to continue providing care and comfort to BR, ready to tackle more of the overdue household tasks, and ready to face whatever MS decides to throw at us next.

Illinois Postcards

Landing at Chicago's Midway Airport

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Visiting with Cindy. We've been friends since high school.

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Meeting my niece, Hope

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Special Valentines

I really believe that Mom's amazing recovery over the past six months would not have been so amazing if it weren't for little Hope, who is amazing in and of herself given all my sister went through to have her.

Here are my girls playing around at Thanksgiving.



BR, you are always my special Valentine, and I wish you could be going with me.

Now face west. Now face north.

I arrived at the Oakland airport Sunday evening. Immediately upon touchdown, I texted BR requesting Superbowl updates. He did a great job keeping me informed until I could get in my rental car and find the game on the radio.

Football on the radio is a challenge for someone who isn't a die-hard team fan. I don't know the names of all the Saints players, so often an exciting play would happen, and I wouldn't know for several minutes whether to cheer or cry. But there was no mistaking that finish. WOO HOO!

It's Thursday now. Only two more work days, then a flight to Chicago on Saturday to spend Valentine's Day with my family. Mom's already started having overnight trips out of the nursing home, and expects to be home full time by the end of the month. I repeat, WOO HOO!

This trip, I expect to help my father around the house making preparations for the homecoming. He's not had internet service since moving, so we'll make a plan to get that up and running. My sisters have already taken care of daily living adjustments with the overnight visit. I expect the biggest preparations remaining will be mental. Mom hasn't lived at home since July 2008 -- nearly two years. Habits change. Depression forms like a fog that occasionally burns off, only to return at night. Coping becomes a solitary activity.

Monday will find me back in Austin. I've caught wind of some good "Cat's Away" stories, and hope that BR will feel up to sharing them.

Geaux Saints!

The Hospice Austin team officially took over BR's care on Wednesday. We met with his nurse and care coordinator that afternoon, and immediately replaced his Percocet with liquid Morphine for break-through pain. This brought about a small amount of pain relief, but not nearly enough to be called success.

Next, we met with the hospice doctor on Thursday, who decided to switch BR from Fentanyl patches to Methodone for sustained pain relief. We made the switch Friday, and again pain was knocked down another notch. So on average, BR is still in a great deal of pain, but feels better than before.

The Methodone has brought with it a bit more drowsiness, but not to the point where BR can't wake up and enjoy the day. It will be interesting to see what happens as the dosage is increased.

My niece, Jordan, has rejoined us as of Sunday to help out once again with the daily caregiving duties. It wasn't a moment too soon, as I had somehow thrown out my lower back while making groceries Saturday evening. Luckily, BR was already in bed, so the next transfer wasn't going to be until Sunday for the morning routine. Maybe I would feel better in the morning.

No such luck. When I woke up, my back was just as bad, if not worse than it was when I went to bed. So I convinced BR to delay the morning routine until Jordan arrived. And like an angel, arrive she did. She immediately took care of BR, then joined us as we watched the Saints advance to the Super Bowl. What a great evening!

Christmas Postcards

We've got our love to keep us warm.
Steak and baked potatoes for Christmas dinner.
No, BR. You can't keep her.
Adelaide in her snuggie, and I in my cap.
Old Saint Nick was very good to us this year.

Christmas Eve Postcards

	BR in the Sanctuary
	John, Dede/Mama, Bobrobert
	BR in borrowed bling

Mama, Aunt, Fosamax, Prialt

BR's mama and aunt have once again made the trek from Louisiana to visit, comfort, and generally raise our spirits. We couldn't be more pleased to have them here. We'll be eating turkey gumbo (yum!) for lunch, and then BR and I will take them out for a steak dinner.

The results came back from BR's bone density test. He has osteoporosis. The GP recommends starting Fosamax, but I have some reservations. Certainly strong bones are a cornerstone of his quality of life, as is evidenced from the recent fracture. But from what I've read about Fosamax, it is yet another drug that may or may not help. I've developed a strong distaste for drugs that instead of curing a condition, only lessen the symptoms. Nobody seems to be asking why BR is losing bone mass -- just take a pill for the rest of your life, and maybe you won't get another fracture.

We are going to pass on Fosamax for now. With the Prialt trial next week, it isn't a good idea to add another medication to the mix. That said, I really don't like the thought of BR's bones breaking down. I need to read up on how to care for someone with osteoporosis who is also wheelchair bound.

Thanksgiving wishes

I was reading Patrick's post on how Thanksgiving has marked so many changes in his family, and it really struck a chord. It was two years ago just before Thanksgiving that I wheeled BR into San Francisco's Davies ER with a neurogenic bladder. That stay, and the subsequent bout with sepsis lasted almost a month.

Then last year, BR had an abscess in his mouth caused by tori. His bite hasn't been the same since they were removed, making mealtimes an extended event.

This year, a sacral insufficiency fracture heralded the holidays. Talk about ouch on ouch.

Yet still, we are in the kitchen making our favorite Thanksgiving foods. BR is on the phone getting the recipe for cornbread stuffing from his Mama. (You didn't really think those White Castles would last until Thanksgiving, did you?) I've made the broccoli cheese casserole. The turkey is thawed and ready for the morning roast. Add green beans stir-fried in bacon fat, roasted pecans, and brown-and-serve rolls, and we have everything to make Thanksgiving special. Except family.

No matter where you are. No matter what you are doing. No matter how you feel about yourself. You are loved and missed.