1.30.2008

Choose Your Own F*cking Adventure

I’ve been feeling a bit jumbled up… so here are some ramblings from this unsettled mind

Sunday night I had a really difficult dream that has been hanging on in this mind of mine. I dreamt that I had taken Mike’s very ill body from the hospital and just kept it with me, hidden for 6 weeks. It was in those last stages, and I got so annoyed with doctors coming in and trying to propose insane procedures as he was dying (remember when they wanted to remove his intestine as he was like 10 hours from death?) …so in my dream, I just took him. He wasn’t conscious, but I liked knowing he was not in the hospital. I took him..in like a body bag with the top opened up… in the car, then to NH, and then to our house. Finally Dr. Evans – after 6 weeks convinced me to bring him in for tests.

So I brought him in and Evans said there was something they could do to relieve the brain swelling. Given that he had had limited brain activity for so long, I asked, “Why…why would we do that? We know he'll never function properly again. Why would we do that?"

To which he replied, “That is a very good question.”

So, I said no, zipped him up, detached him from everything, and carried him back to the car.

There was another dream with a similar theme about a month ago… but in that one, it was earlier in the process. It was after Mike’s first surgery. He had “successfully recovered.” Still had his beautiful floppy hair. We had resumed ComedySportz rehearsals. And then we went in for a check up with Evans and Andrews. We learned that it was growing again. (This whole thing is consistent with what actually happened – exactly two years ago. It was January when we learned that the freaking thing was growing some large cystic components… and it was the last week of January and first week of February when he underwent three surgeries to implant the stubborn catheter (shunt) in his head to drain the cyst.).

So, in the dream, we were in Harvey (his 96 Saturn), driving home from the city, just following this meeting with the surgeons. He announced clear as day to me (in the dream) that he was done “dealing with this brain tumor.” He was finished making accommodations for it and losing time from his life to treat it and corral it.

He was wearing his black jeans and blue comedysportz jacket. He looked a little pissed off, but unshakably confident. He turned to me and said, “I’m not going to have them take it out again. I’m not going to spend anymore time in the hospital. If it’s going to kill me, then let it kill me on my time.”

And that was that.

I woke up full of regrets. Why did we go forward with the surgery in early April? Why didn’t we think to just let him live with it until he died – giving him an ending that would have maintained his dignity in a way that his actual death did not allow?

Had we opted to just let it run its course, I thought, I would have had him for longer. He would have had more time with friends. He would have had more time with Baxter. And his death would have been less horrifying that the five-month long death scene we all lived through in spring 2006.

But then my logical brain kicked in. Thank god. I started actually playing out the scenario that would have transpired had he refused treatment starting in January. First, he would have died in like a day without medication… so living a truly autonomous life completely free from medical intervention was out of the question.

Ok, so what if he agreed to take the medication, but refused all surgeries (including the implanted catheter etc)? Well, the reality is – the thing would have continued to grow. Fast. And all the bullshit from March through July that played out in fast forward in the hospital… all that shit would have played out anyway. The bigger the tumor got, the greater the pressure and swelling, the more we would have had all that bullshit:

  • Blindness
  • No short term memory
  • Erratic behavior
  • Delusions
  • Confabulation (making shit up that never happened)
  • Dehydration (which would have exacerbated all the above)
  • Incontinence

And all of these things would have once again precluded him from living an autonomous life. He wouldn’t have been able to be alone. He would have had to be cared for.

But, at least he’d still be alive, I thought. Right?

Wrong again, silly Danna subconscious.

The location of the tumor and its rapid regrowth would have likely resulted in the same consequences as the post-operative swelling that ultimately killed him. There’s only so much room in there – and whether that space had been taken up quickly by swelling after his July 7th surgery (as happened in real life), or if it had been taken up by the tumor itself as it grew and grew and grew uncontrolled over time… It would still have affected the same part of his brain. The midbrain. The central nervous system. Body temperature. Heart Rate. At some point, all this would have caused tachycardia (rapid heart rate) anyway. And that is what caused a heart attack – which it probably would in the face of an uncontrolled tumor left alone to wreak havoc. Ultimately, the heart attack stopped blood flow to the major organs. His organs began to fail. His kidneys stopped working. His body retained fluids – and all the 1000 medications being pumped into his blood had nowhere to go. Nowhere. Except to make him swollen and to cause further pressure inside his ailing body.

But, thinks the manic hamster on a wheel in my overactive brain, BUT - maybe if he hadn’t under gone all these surgeries, he wouldn’t have gotten DIC (that fucked up blood clotting illness that prevented us from being able to give him certain treatments or remedies). And maybe some little change in all of these various factors would have meant that he wouldn’t have entered Status Epilepticus - the constant seizing of the brain that renders a person brain dead… which was the final straw in our vicious storm.

I keep trying to play this out as though it’s a "choose your own adventure book." And had we just chosen to take the purple door instead of the red one, everything would be different. But it wouldn’t be. No matter what, Mike would have lost control, independence, and time at home.

And - Mike hated being dependent on anyone for anything.

And - more than that... Mike hated the fucking hospital:

February 6, 2006 in an email Mike sent to friends after his series of three surgeries to put the fucking shunt in:

“I am thankfully back at work today, having been released from the hospital last Friday. And since I’m not in the hospital, today is a good day.”

I hate that I revisit this shit. I hate that my brain even allows me down this road, thinking about the various things we COULD have done. But I think the moral of this story and the moral of these dreams is that no matter how much we could have tried to foresee what was coming, there would have been no real way to get Mike’s life back to what he would have wanted it to be. Once the tumor was there and saying its big “fuck you” to all of us, it was a done deal.

In fact, after months of my dragging my freaking feet, I finally emailed Mike's dear friend (and diligent dutiful lawyer), Mike's autopsy report. He had asked to see it for it for months, just to ease his mind that Mike did not die from substandard medical care. I had a hard time even allowing my mind to introduce that possibility, so I kept putting off the request. Finally I sent him the 25 page hellish document (which included dreadful references to the color of Mike's eyes and hair... in addition to downright hysterical reference to random organs. Such as the following statement: "The right adrenal weighs 8 g. and the left adrenal weighs 9 g. They are unremarkable.") Mike, you have a lot of reasons to be pissed off, but whatever dude called your adrenals "unremarkable" is a douchebag!

So, our friend then sent the report to several lawyer folks he knows - just to be certain that everything played out as best it could have...

And his reply basically said that given the information everyone had at the time and given the various options chosen, it is quite fair to say that Mike did NOT die from substandard care. However, he wrote,

"We concluded that a lawsuit against the tumor would be successful, but that the tumor probably didn’t have insurance and had few assets. Damn deadbeat tumors."

So, once in motion - perhaps the whole fucking thing was a done deal. And perhaps, in spite of how horrifying it all was and how terrible and undignified and ugly and haunting those last days were… Maybe that ending at least hastened the slow downward spiral that could have gone on for weeks or months. Maybe the way his actual death played out was the only way that it could be in his own control.

I think about when I told him he could go. When I told him that we didn’t want him to go, but that if he couldn’t fight anymore and if he had to go, that we’d be ok. That Bax and I would make it ok. And I remember knowing he heard me as he looked right at me. And that was the last day we heard from Mike Young. That was Thursday. Tuesday morning he was gone.

[Cut to last night]

I went to see M. Butterfly at PTC’s new beautiful theater last night with Cara. It’s an amazing space. I had to leave at intermission when I learned the show ran almost 3 hours (ADHD danna + young child + tired mama), but in the lobby on my out, I met some of the people who work in the development office of PTC. They love the outpouring of support for Mike's seat there. They were so sweet and kind. And it's true - everyone seems to have known Mike somehow.

I left the theater and walked towards my car. Suddenly I was short of breath and felt like sobbing for the first time in a long while.

I just wanted to see him and be with him for a minute. As I was walking on Locust from Broad St. towards 15th, I had a strange compelling urge to run to the Gibbon building at Jefferson – as though he’d be there. I got to the parking garage, got in the car and drove. My car took me to 18th and Sansom. I parked, got out of the car and ran. I ran down past my old apartment building at 19th street. I ran past O'Sheas where we spent so many nights post-ComedySportz performances joking and playing. I ran across 20th street and right to The Playground theater at the Adrienne (the space where ComedySportz performs every Saturday). Tuesday is rehearsal night for Comedysportz. Last night was Tuesday night. Rehearsals run from 7 -10 pm. It was 9:45. I haven’t really been back to ComedySportz since Mike's death. I haven’t performed since summer of 2005. I attended one rehearsal after Mike died, but it was just to weird. Too hard.

When I heard the sound of the theater door opening, it all came flooding back. I just wanted to be with him for a minute. I thought that maybe I would find him there at the theater.

And I did.

The faces – old and new. The games. The laughs. The friends who knew Mike Young before I even knew he existed. The conversations about how to make scenes better and funnier. The arguments. The direction. Jadico is directing the group now. His style is similar to Mike’s. He’s stern. He’s a little OCD. He’s a perfectionist. And he’s really really good at what he does. It was a little like coming home.

So, all I wanted was to be with Mike for a moment. And there, in the presence of friends, and the improv comedy troupe that he directed for so long, I think I got exactly what I wanted.

1.22.2008

...ok, so they were off by $1000...

Ok, so the letter from Philadelphia Theater Company was off by $1,000.

D'oh!

We have actually raised only $3,045, not $4,045. But that's still pretty freaking good. About $1500 of that has been contributed in the form of lots of your smaller donations of $100 and under. It's like a regular grassroots campaign here, people!


So thank you for your generosity - and if you were thinking of donating to his PTC seat, but thought we already had the whole thing covered, think AGAIN! And once you donate, you can join us for the schmancy unveiling in October 2008!

DONATE TO MIKE'S SEAT HERE (Be SURE to write in the comments box, "Gift in support of the seat in honor of Mike Young): https://id209.chi.us.securedata.net/%7Ephiladelphiatheatre/support/giving_form.html

Instructions for donating:

  • Don't go to the Seat Campaign page as it only registers gifts at the full seat levels of $2,500, $5,000, $7,500 and $10,000.
  • Instead, on the "Support" page, you can fill in the amount you wish to contribute.
  • Under “Apply,” you should note “Other.”
  • Then, in the “Comments” section, you should say "Gift in support of a seat in memory of Mike Young."
  • That will enable your gift to go towards Mike's seat. PTC will let me know of donors as you participate and will keep me apprised of the total funds raised.

1.16.2008

Mike W. Young: The Funniest Man in Philadelphia

As you saw from my last post, I'm feeling quite good these days. I feel so appreciative and grateful and happy that I almost feel a bit manic.

As my friend Scott has told me (thanks to all his Zen Buddhist sctuff) I need to make sure to simply "Kiss the Joy as it Flies." I tend to want to harness it and package it and make sure I can guarantee a way to make it permanent. But... nothing is permanent. And in the quest to make permanent some feeling of joy, in the past I have precluded myself from living in the happy moment itself - too concerned with how the heck to make it last.


So today, when I got home and opened the mail, and I saw something that filled me up with such joy that I cried, I kept reminding myself to "kiss the joy as it flies."

Philadelphia Theater Company wrote to me to tell me that the total for Mike's seat is up to $4045. This mean that we're going to be able to get one of the rear orchestra seats for Mike, instead of the $2500 Mezzanine seats.


As for the engraving on the back of the seat? I remember Mike telling me about a compliment he received years ago that stayed with him. It was from a friend of a friend who said, "I hear you're the funniest man in Philadelphia!"


Mike W. Young
The Funniest Man in Philadelphia

What do you think? Don, would you protest too much? If I had another $5000, i would buy a seat next to his that said, "DonDon: The Second Funniest Man in Philadelphia."

cause that's just the kind of sweet girl I am.

1.14.2008

Reflections on life and love. Breaking the rules once and for all.

[Note: Just found some new photos from Bax's 12/16 birthday (at left with Jack L looking cute & at right with Jack L. awaiting bday cake) on my camera that I added at 7 pm on Monday night... scroll down!]

I finally have a moment to sit and write. I am in NYC, in a beautiful hotel room (see photo at Left) paid for by my dear friend Liz’s company.
Yes, the same lovely Liz who I traveled with in France this summer. But now this lovely Liz is about 5 months pregnant! Due in June. Since the summer, Liz, her husband Scott, and their 2.5 year old bright-eyed son Noah moved to Munich Germany. So, to get time with her just for a brief overnight in NY is such a treat.

So, Liz headed off to work at 8 am this morning, and now I sit in bed, working on my laptop, about to do a few hours of work before catching a train back home to NJ.

Random fun quick news: When Mike and I moved in to our house, the fridge in the kitchen was too small. We bought a large stainless steel one, placed it on the opposite side of the kitchen with every intention of moving the original fridge into the basement. Problem: that original fridge was too big to fit through the door to the basement. So, for 2 years I’ve had 2 fridges and close quarters in the kitchen. Cut to one month ago: My friend Grace’s husband Steve came over with his teenage son and helped me move that original fridge out the front door, down into the basement through the outside door, remove some excess counter and cabinet, and sand and spackle the exposed wall and install baseboard. Then, I decided to paint the new wall a bold brick red. My new huge kitchen is my favorite room in the house. I LOVE IT. (see my beloved wall at right)

The wall was finished just in time for the Young Holiday Christmas Caroling extravaganza featuring Choir Masters Pat and Peg Walsh. This year, we had about 60 people, including many of the families on our street. Santa arrived to deliver gifts at about 7 o'clock (thanks, Carrie!), just before the party transitioned from kid-friendly to adults-only (see Santa in photo at left. Also well-featured is my heaving bosom. Enjoy.)

Christmas was spent in NH this year, under 36 inches of snow (see photo at left of Poppy shoveling!). And it snowed almost every day we were there (Dec 20 – 27). Baxter went sledding with his Poppy and Auntie Jae Jae and cousin Kylee, did a lot of cooking with Mimi, and had a great time playing with the schmancy tool kit that Uncle Stephen got him for Christmas. It was a relaxing and wonderful holiday.

Of course there were moments when it was hard. There always are. For about an hour after watching the movie “The Pursuit of Happyness” on cable I was a freaking disaster. How I could possibly have thought that watching a film about a single parent who struggles to raise a son by himself was a GOOD idea is beyond me… but I survived the fallout. What’s interesting to me is that being in a circle of people without Mike no longer introduces that sort of empty incomplete feeling that it used to. I’m so accustomed to it that I think I’m just not as sensitive to it anymore.

Each night, after Baxter would go to bed, I would take a glass of wine or tea out onto a cleared off spot on the back deck. The sky is so big up there. But it was overcast each night, so I didn’t have that same sublime feeling that accompanies gazing off into the sea of stars. Instead, I felt enveloped and protected. I don’t know why.

Maybe I do know why. I spent the entire Christmas break knowing that I am at the beginning of a wonderful relationship. I talked to him every night while I was away. We texted throughout each day. He makes me feel… enveloped and protected. And happy. And young. And alive. And good… healthy good. Like I feel after voting or eating veggies for dinner. I feel like he makes me better. A better person, I mean. And when I’m “in it,” he holds my hand or rubs my back and says he’s here for me for whatever I need.

I know people close to me may be wary of my willingness to put my heart out there and to talk about it, but I think that I need to. In my last post I alluded to this new relationship, but as you know - I've always been weird about writing too much about relationship stuff on the blog. However, I think that my fear of being prematurely self-disclosive in the context of this relationship is the reason I haven’t written much in the past couple of months. (Our first date was late November).

To be honest, my relationship with this wonderful young man is always on my mind. I can’t really figure out what to write on the blog without talking about it. So, at the risk of saying to much…. Screw it. His name is PJ. He’s funny. Way smart. Likes to think and argue about issues and politics. Makes fun of me for being full of shit (which is a necessary element to a healthy relationship with me). Very affectionate and kind and loving. Playful. Silly. Charming. And so so so cute. Like the kind of cute that gets more and more attractive every time I’m with him.

We see each other about 4 or 5 times a week. We go to the playground with Baxter. We go to the movies and out to dinner – sometimes with bax and sometimes without. I’ve met his friends. He’s met my friends. I enjoy cooking for him – with the added challenge of the vegan diet. He now keeps a carseat in the backseat of his hybrid – which I think just about caused his mom to have a little heart attack when she saw it last week – but when she meets Baxter on Friday, I’m pretty positive she’ll be smitten. Word on the street is that his family is already keen on me because he’s so happy. That alone brings me joy.

On New Year’s Eve, after our few friends left, I fell to pieces in my grief. Several reasons why… but in the end it was that jarring realization that now it’s 2008. Mike’s still dead. He died in 2006.


There’s a line in a song by Ben Folds that says it all: “You drifted far away. Far away it seems. Time has stopped, the clock keeps going.

Sentimental Guy, Ben Folds

You can listen to it here (ignore whacky video, just listen):

There's a moment in my mind
I scribbled and erased a thousand times
Like a letter never written or sent
These conversations with the dead
I used to be a sentimental guy
Now I'm haunted by the left unsaid

I never thought so much could change

Little things you said or did
Are part of me, come out from time to time
Probably no one I know now would notice

But I never thought so much could change

You drifted far away
Far away it seems
Time has stopped, the clock keeps going

People talkin' and I'm watching
As flashes of their faces go black and white
And fade to yellow in a box in an attic
But I never thought so much
Could change, now I don't miss anyone
I don't miss anything
What a shame cause I used to be a sentimental guy

So, that night I sat on the edge of the bed, sobbing with my face in my hands, and apologized. PJ asked if I would rather he go downstairs, if I wanted to be alone with my grief. I nodded. He walked to the door of the bedroom, out into the hall and then his footsteps stopped. Then I heard him whisper from the doorway, “Babe, I will go downstairs and leave you be if that’s what you really want, but it’s killing me watching you cry there all alone.” I gestured for him to come back. He simply sat next to me and rubbed my back. I started spewing stuff… memories, funny things about Mike, sad things from when Mike was sick, statements of anger. I don’t even know how long I went on for. PJ just sat beside me and rubbed my back. In that moment he was a dear friend. I can’t imagine how difficult and potentially awkward it could be for someone to stand in his shoes. Someone without a strong sense of self might feel trivialized or jealous or shut out. But he didn’t. And for me to connect with someone – to really connect and be myself – that person is going to have to accept that my grief is a part of who I am. I’m not in it very often anymore… but as I’ve always said, when I am “in it,” it hurts just as bad as always.

Then there is the Baxter side of the equation. Baxter loves him. He loves Baxter. He loves playing with Baxter. And Baxter is sweet as candy when PJ is around. I think he likes the fact that we are openly affectionate, hugging and holding hands. Baxter smiles and his eyes twinkle a little bit. One time we hugged and gave a quick kiss and Baxter gave PJ a double thumbs up behind my back. No, I'm not joking. Part of me thinks that Baxter remembers what it was like having a mommy and daddy who loved each other and were affectionate and kind and sweet. I think that somewhere in his mind, the sweetness that PJ and I show each other is ringing familiar with Baxter. He seems so calm and happy when we are together. It’s incredible really. One would imagine that the 3 year old boy would be territorial and competitive for my time. But it's quite the opposite.

At the same time, I think that this relationship is stirring all kinds of memories for Baxter. When he’s tired now he yells, “I want my daddy.” Or “I miss my daddy.” A lot more than he used to. Sometimes when he wakes up in the middle of the night he’s saying it. When he says it during a tantrum, I really feel like he’s trying to get a reaction from me. And I know that no matter how hard I try NOT to react, I’m sure that my body tenses up and he can tell that it hurts. But in the middle of the night? I don't think that's contrived. Something is stirring in his little head.

The other night before he went to bed, after we had read Bax a story, it was like the Spanish Inquisition: “PJ, will I see you tomorrow?” yes. “Will you play cars with me?” yes. “Are you going to be at our house for all the day?” yes.

And while a part of me is nervous about this level of intimacy this soon… the part of me that actually knows what’s going on (the heart part, not the over-thinking head part), knows that I have nothing to worry about. On paper this thing is way too quick… and potentially dangerous yes. But we’re not living on paper.

I’m reminded of those early days with Mike. I don’t know how much I’ve written about this and I hope we’re far enough away from it that all parties involved are ok with my writing this, but…. Mike was married before he was married to me. And when we met, they had been separated for several years, but not divorced. And he was older than I, as you know. By almost nine years. Now, on paper, this would appear to be a freaking disaster. Not a wise choice to get involved in this situation, right? But, I knew the situation. I knew his wife. We shared – and continue to share – common friends. I trusted Mike. I knew that he was open with me about where things were at.

The divorce took a long time to come through. Mike’s friend offered to do it for them on the cheap (or free, for all I know), but since he wasn’t a divorce lawyer, it just took a long time. Mike and I started dating in February 2000. February 2001 we were talking about my moving in with him when my lease ran out (I had a studio apartment at 19th and Walnut). My lease would be up in May. When April 2001 came and the divorce wasn’t through, I had to tell Mike that I couldn’t do it. I just couldn’t move in until he was officially divorced. It just wasn’t right – for me. And no, it’s not that I didn’t trust him. No, it’s not that I thought I was being duped. It really was about my feeling like I had to have some self-respect and do what felt right. So, I extended my lease with a month to month arrangement. Mike and his soon-to-be- ex-wife got the paperwork completed. In July it was final. And at that point, I moved in.

Interestingly, about a month after I moved in, Mike told me how much he respected my decision to extend my lease on my studio. It helped him realize how important this was to me. It helped him see that I would make decisions in my own best interest – and not simply cave under pressure. He told me several times that those couple of months really informed him about what kind of person I was.

All of this is to say that when I described my dating situation to friends and family in that first year with Mike, eyebrows raised and brows furrowed. It just didn’t look like a wise situation. But it was. I knew it was. I trusted him completely.

And that is how I feel right now. PJ is not the kind of person who makes cavalier decisions. I actually don’t know many people who live their lives as deliberately as he. His veganism is about a larger notion of right and wrong. He drives a hybrid for the same reason. The guy is a recycling fanatic. He doesn’t use gift wrap because it’s so wasteful. He is very close to his family (he's one of 5). He sees them about once a week. He spent last weekend painting his parents' house with his dad. He has a core group of friends who he has been tight with since high school. He stays in touch with them on a regular basis.

Suffice it to say, he is not someone who would insinuate himself into Baxter’s day to day routine without a firm belief that he’s going to be in the picture for a while. Simple as that.

So, that's what I've been up to. Now that I have opened the door to posts about what's REALLY going on in my life, you will likely hear from me more often.