Tuesday, August 31, 2010

1990-2010

Sometime between March 3rd, 1990 and August 17, 2010... around 3:30am
Danielle smashed the lock with an old hammer that came from the mountains.

She opened the shed doors and stole it!

It was a necessary crime, kind of like a protest.
I was lucky enough to be an accomplice.

Sunday, August 29, 2010

1991

Haven’t posted in a few days… not sure how to keep the blog going. I have Danielle thoughts all day every day and want to tell story after story. I am compelled to keep people interested in her life - she meant so much to so many.

I have many people writing me that they don’t have the words… that they do not exist. I think they do exist. They are hard and confusing… like algebra.

Gus and I could not have made it this far without words, friends and safety.

Our relationship was 50% humor and 50% unexplained phenomenon.

All I can think to do is recall our lives together as it comes.

At the moment I cannot stop thinking about 1991 around 12:30AM down at the Memphis Queen Line River Boats. She showed up around that time to help sell Photos and load up the gear.

We had sold photos to people leaving a late night cruise on the Mississippi river. There were display boards and extension cords to put away. I did the heavy work and Danielle would roll up the power cords.

I was on the dock when she yelled out “ SOME IDIOT PARKED ON THE EXTENSION CORD”… I looked over at her just as she said “NEVERMIND!!!”

It was she that had parked on the cord.

That moment stayed with us for 19 years.

Wednesday, August 25, 2010

An odd memory

I remembered this story earlier today and wanted to share it.

Back in the late 1990’s Danielle and I were apartment sitting for some friends here in Memphis. While lying in bed one night in someone else’s room we started discussing the TV show “MASH”.

After talking about the characters Winchester and Frank Burns… we got into a friendly argument about which came first and if they ever met one another on screen.

Danielle was adamant that they were on the program at the same time and acted in scenes together. I, on the other hand, was positive that they never met and one replaced the other. I argued that Frank Burns was the original and Winchester replaced him.

The discussion went on for 45 minutes… lying in bed in Mid-town Memphis around 1 in the morning.

Finally I got up and looked it up on the Internet… could not find any answers but did email some web-site that would get back to us the next day.

We received an email the next day that said… Winchester and Frank never met on the show but did talk on the phone in one scene.

I was right about MASH but she was right about everything else.

Tuesday, August 24, 2010

I have no idea how to extend her words so I’m gonna flop around like a fish out of water. I know Danielle wanted to communicate with all of you during her last nine days or so. August 3rd was her last post and Aug. 7th her last comment. Those last ten days were spent visiting with family and sleeping a lot. We constantly talked with the doctors thinking the meds were causing the fatigue and sleep. Truth was her brain was constantly swelling and creating pressure… we were clueless. Before she and I knew what was happening she could no longer speak or communicate. August 14th was the day communication became very simple and possibly incorrect response at times.

The lesions in the brain just did not respond to the radiation and continued to expand. Despite how the treatment effected the body the brain was not working out.

Danielle remained determined and positive throughout this entire ordeal… to the point that we never had any conversation about… what if ? Sure… we knew this was not going to disappear but had no idea it was so vicious. She never realized what was happening.

In a way it was a blessing… she just fell asleep… but for me it was heartbreaking not to communicate one last time. For twenty years I talked to her about everything… who pissed me off… what I found on the side of the road… daily experiences or adventures… odd conversations… strange hobos or hitch-hikers… artistic collaboration…EVERYTHING.

This summer blurred across time. Doctors offices… treatments, paperwork, crying, dreams of time machines and magic. We left for summer vacation and never returned.

The last 10 days were spent with her mother and Dad, me and the boys when possible. We would trek to the cafeteria and get food she would nibble on. I would lie in the bed with her and try not to move for hours.

Trying not to rant in several directions so bear with me… I was getting pretty frustrated at times but she would still calm me down and teach me to kill with kindness… she became zen.

I miss her so much it does not match a human scale.

Sunday, August 22, 2010

Danielle and Jamie

I intend to tell the rest of the story. Soon

Tuesday, August 3, 2010

I'm gonna attempt to get back to a normal blogging schedule I've missed you guys!

Seems like the past week has been really foggy, time in my brain is moving like a snails pace, but time outside it is flying by. Pretty sure the reason is because of the pain meds. Finally I got to talk to a pain management doctor and nurse last and he;s once again lowered my MScontin (long acting Morphine from 45mg twice a day to 30mg), is keeping me on a dalauidid pump that I can push every 15 minutes, I still have the "break-through" Dalauidid push if needed, and he added a new medicine last night, Neurontin, which is an anti-seizure med, that is also used to control muscle spasms which he believes will help control the muscle area in my back that in intermingling with some nerves back there and causing me pain. It does seem to have worked OK, becuse I woke up at 5 am with pain but not as much. I did ask the nurse about some of the side effects o this new drug, because I didn't have the typical "normal" pain that I normally had, I'm much better, just a little goofy foggy feeling. She said it takes a while to get used to it, but I should have this feeling for about another week or so. Picture eyes rolling back...geeez! Well what's another week right!!

The Radiation Oncologist, Dr. Lee said he's gonna reevaluate the MRI they did of that area and see if hey can also shoot it with radiation beam and that would also help with the pain.

My regular Onclogist has sent my "samples to The little Rock clinic and we have a scheduled appointment on August 13. So I gotta get the hell outta dodge soon and halve some visiting time at HOME with my family, so if you all don't mind sending a little extra push of prayers, love and light my way, that would be wonderful!

Momma and I have been going through her old photos, I’ve posted a lot of them on FaceBook, and now I’m in the the process of adding captions, which has been really funny, because I haven’t heard a lot of the stories, I it’s very interesting to know how the Belgian family was just as hilarious and dysfunctional as every other family!

My BoBonne was a spitfire! SO check them out periodically because it'll take me a little while to add all the captions and I'm also working on a blog and book for the project.

Bon Courage!

Sunday, August 1, 2010

great visits and great memories

Yesyerday was a really good day. The doc upped my long acting pain meds, so after they gave the to me a 9pm, and they combined with the pain pump, rally kicked it, I was feeling MUCH better! On the pain scale, probably about a 5, which trust me is very tolerable for me, kind of like a mild headache. I was feeling so good and really present and clear-eyed I decided to blog about the Nurse situation. I’m glad I did it, and now its out there, pretty sure what I’m gonna do with it, but now I’m done with it on the blog…unless it happens again. I need for Bon Courage to be a documenting process for me, but I really want to keep it positive. Hope ya’ll don’t mind!

So around 11ish, I got a surprise visit from our friends Eddie and Gretchen, we had a really great visit and let me tell you all, if you need a patient advocate, or even a great medieval lady-in-waiting and knight and shining armor, look no more, they have been found.

I got lucky when I was in graduate school, because my friend Patricia V. was their Babysitter for their son Richard, the sweetest little guy. Patricia had something to do and she suggested I fill in. Thanks P, because you just don’t know how that changed things for me and Jamie! Jamie and I had been together for 6 years and were already married, but it wasn’t until meeting little Richard that I actually began to contemplate wanting, no needing children. Eddie and Gretchen would always tell these funny stories about their lives as parents, and how life was going while Eddie had been in graduate school, how he and Gretchen were dealing with life as he built his career. Although vastly different careers, everything seemed to be so parallel.

Jamie and I watched Richard together a few times and Jamie was smitten too. But I remember one time where I was gonna take Richard to a petting farm in Millington, but I had a really bad headache, so I asked Gretchen if she though it would be OK if Jamie came to pick him up while I rested a little bit trying to get get rid of the headache. I could tell she was a little hesitant, but she agreed. I remember her telling me later that she’d never sent her baby off with a guy, even if it was Jamie, and she was just being a worried momma. As a momma now, I can totally understand her thoughts! Jamie brought Richard over and he was wearing his Thomas the train engineer cap, and little red sweater. TOO Cute! We all went out to the farm and on the way a then 2-year-old Richard, looked outside at a road construction area, and said Look Jamie, an Excavator. Jamie and I looked at each other and were like…did he just say EXCAVATOR?? I asked him what an excavator was and just looked at me and said, it moves big dirt! But that was Richard, extremely smart, and articulate! We got to the petting zoo and it was a huge success. I need to find out if it is still there, it’d be great to take my boys now!

Probably the funniest memory I have was in early summer of 1998. By that time Eddie and Gretchen had had another sweet baby Jack who was now just over a year old. I had graduated and had sent out about a bazillion applications to find a teaching position, and was in the wait to hear mode. Well it was a Saturday morning and Richard and Jack and I wear playing and the phone rings, I was shocked to hear someone ask to speak to me, and especially discombobulated to hear the voice say that he was a professor at West Texas A&M University calling with a phone interview! Turns out he’d called Jamie’s parents house where we were living, and Jamie’s mom was so excited for me that she passed along the babysitting number! I asked him to hold on a minute and I asked Richard to do me a huge favor and sit in the playroom and read some books to Jack for a few minutes while I spoke to the man on the phone. Richard and Jack kept themselves busy and I got a fifteen minute phone interview, the first of three, and that job became my first “offical” full-time tenure-track teaching job! Just think, had those babies been running around screaming willy-nilly in the background, maybe the turn out would have been very different, or maybe not. But I like to believe that they were my little good luck charms that day!

Just before Eddie and Gretchen left the hospital my friends Kathy and Larry peeked their heads in too. The had driven from Asheville, NC to Memphis to visit a relative and had wanted to check in on me. You see I had made plans to visit them in Ashevile about the time the melanoma reared it’s ugly head, so I was unable go visit them.

I met Kathy in graduate school. I can still remember the first time I met her. I had a graduate class with my professor Wayne Simpkins sealing with the computer and combining photos in Photoshop in a provocative way. Kathy had brought some of her of her mother. they were beautiful. I had been working on combining my old NC family photos together to create little narratives. Right there instant connection, not to mention she very funny and sweet natured! She and Larry worked a lot in mixed too so she took me over to their studio in the sculpture lab. Eventually when I presented my thesis to build a bed installation, the sculptor professor Greely Myatt suggested I use a little area right outside Kathy and Larry’s studio to carve the headboard and footboard. It was a great place, because I had lots of people milling around in the woodshop below; I was surrounded by all the folks that could help me, considering I had NO idea how to build or carve anything.

How I came to make this thesis choice is a “whole nother” blog story in the works.