As each day goes by I sob with less frequency. Yesterday I only sobbed three times. Actually they were more like gentle cries - none of the big moaning sounds that were present just a few days ago and often made me wonder if I was disturbing the neighbors.
I am getting beyond the sorrow of Tad's death and slowly entering into the murky painful waters of his absence.
The first phase was more like a mild version of PTSD. For days I had flashbacks of his last few minutes, of him being carted out. I replayed those last 90 minutes of panic, then anger, then calm. Yesterday at the dentist's office I saw someone gag on one of those plastic sucking things they use to hose out fluids and suddenly felt a jolt as I remembered Tad coughing in my arms. At the doctor's office (yesterday was my big self-care health day) I saw an elderly man in a wheelchair struggle to get to the lab and remembered getting Tad onto the plane bound for Seattle.
The second wave of emotions is more of a longing ache, a gentle yearning. I find myself asking him out loud: "Tad where did I put my keys?" or "Tad help me understand why the cat is making that funny noise. What does she want?" or just looking at a photo of him and thinking "God I love you!".
With the ache also comes an element of relief. On my way back to his house in Santa Cruz after a full day in San Francisco I stopped to buy some take-away food in Silicon Valley at a market I know from Tad's Stanford days. I took a taste of the chicken Tikka Masala and had to have some. I found a spicy mandarin chutney to go with it. As I walked to the car I was aware that had Tad been there he would have turned his nose up and I probably wouldn't have bought it.
Perhaps this was co-dependency on my part. Perhaps I should have just eaten what I wanted whenever I wanted while he was still on the planet. But the more I thought about it the more it felt like the healthy concessions we make in order to nurture loving relationship. For us, marriage (or in our case non-marriage) was about knowing when to stick to our guns and when to find middle ground or simply let go entirely.
In the middle of my doctor-dentist day in San Francisco I suddenly felt absolutely and utterly exhausted. I felt like I hadn't slept in weeks. My dentist who is used to bubbly Greg couldn't get a word out of me.
It seems that right now the gentle slow pace of small-town Santa Cruz is more appropriate for my emotional and physical state.
My biggest struggle however is to not let my sadness be drowned out by fears about the future (the oldest neurosis in human history I do believe!).
In essence Tad's house is a sweet rental that is owned by a cooperative. All of the neighbors are homeowners and Tad was their tenant (imagine 90 landlords!!). Among Tad's many accomplishments is he managed to domesticate me! Over the years I agreed to get a vegetable plot through the city, a ginormous flat screen TV for the tiny living room, a water fountain for the precious flower-filled yard. As our love for one another deepened - then complicated by disease, caregiving and fear of death -- I spent more and more time in domestic Santa Cruz and less time in urban San Francisco. I literally go out back, lean over a picket fence and chat in the evenings with Ana, the sweet neighbor behind us.
Now that all the framework is still here but he is not I find myself in a terrible conundrum that haunts my sleep: how can I walk away from this beautiful nest we created? how can I put this carefully-designed, color-coordinated, heartfully-cherished household into a twelve by twelve storage unit until I have a better place for it all?
In an ideal world I would love to have both places. I would love to continue sharing my time between the urban stimulation of San Francisco and the sweet seaside sleepiness of Santa Cruz.
When I share this with friends the reply is systematic: Now is not the time to make big decisions. But at $1000 per month (or $33 per day) I feel like time is running out. Or rather, money is running out.
Part of me tells myself that this is just a game my brain is engaging in to play tricks on me. I've seen friends lose a parent and suddenly all they can talk about is money - far more than what is necessary. I can tell accounting is the best coping skill they can summon.
So is this whole thing a story I tell myself? Is this just another way for me to combat fear? Fear of the void? Fear of letting go completely? Fear of my own death perhaps?
I once heard a prayer I believe attributed to Rumi that reads something like this: "God help me to see that the snake I fear is simply a coil of rope and the treasure I seek is the necklace already hanging around my neck."
I woke in the middle of last night in a moment of calm and had the following thought: "Who doesn't dream of dying in his own bed while his beloved holds him tight whispering love to him through every pore of his body?"
I know I do.
Friday, September 16, 2011
Wednesday, September 14, 2011
ashes to ashes
The funeral director who wanted the big fat check up front never called me back on the designated day. It wasn't until I called him and said rather harshly to the receptionist "I feel a bit like I'm being jerked around," did they set an exact day and time for Tad's cremation.
The fact that his body is still here on earth and only a short walk from my house was haunting me. I kept fighting this urge to ask if I could come see him; an urge that was only conquered by the memories of other dead bodies I've seen here and there. They can look rather frightening after a few days. I was so afraid that I might see something horrible that I resisted my temptation to run over there.
His continued presence on earth was part of the reason I had a bit of what can only be called a "meltdown" while I was up in San Francisco for about one hour.
I was growing overwhelmed by the presence of all of Tad's belongings. The sempiternal homebody, he loved to keep his house full of nice things. This was at times a source of dissonance between the two of us: "I feel a bit claustrophobic in your house" was met with "Well your house is just as full!" This may be true but at least it's full of MY stuff.
I had a hunch driving to San Francisco on a major highway would be a bit too much for my sensitive system so I had my sweet friend Geof drive me up there. Once we arrived he helped me carry my bags into my apartment, asked if I was okay being alone and left.
I sat down at my computer and received a reminder email of a game night being conducted down in Santa Cruz - a room full of people who may or may not have known Tad. I looked around my place and realized that I didn't have that soothing calm feeling I usually do when I come home. This notion scared me: If I don't feel good at Tad's and I don't feel good in my own little cocoon where can I feel good.
I began to weep (of course) then I began to be afraid of this idea that no place felt comfortable and started hyperventilating. I knew I needed to find someone to drive me back down to Santa Cruz or take the train. But I couldn't seem to walk. All I could do was lie on the floor crying and rocking back and forth.
I tried to catch the subway to get a train but MUNI was running late, my sack weighed a million pounds, I was overwhelmed by the crowd (truth be told I was strongly put off by all the outer signs of fashion and wealth that I saw around me - it all felt incredibly frivolous and vapid).
Finally my friend Gregg agreed to drive me back down here.
I went to the evening festivities where we played a crazy game called "Werewolf" in which we take turns being villagers and werewolves eating someone (in the case of the werewolf) then murdering someone out of revenge (in the case of the villagers). I recognize it doesn't sound very soothing for someone who had just felt his husband shudder for the last time three days previously but in fact it was delightful to be concentrated entirely on something silly and inconsequential.
Coming home afterwards to sleep alone in Tad's house for the first time was difficult but once I stepped into his house -for the first time- I thought I could hear him inside of me, a voice I'd been waiting for since he died.
I don't know if this is something I completely project or if I actually believe that dead people communicate with me. I have had some uncanny experiences in life which at times I explain away by ascribing it to the powerful unconscious and other times I feel there are things happening on a level that I will never really comprehend. Lots of people have tried to convince me that one way is the true way - alas I am a doubting Thomas. I need to put my hand in the open wound in order to believe. And even then - even when very strange things occur in my world that have no logical explanation they tend to lose their credibility with me over time: Did that REALLY happen or did I just dream that?
When we arrived at the crematorium this morning for the final gesture I was sure it was the right thing to do yet hesitant to even get in the car. If no one shows up the funeral folks just do it themselves but they offered to let us attend without failing to mention "Normally we charge for this." Fortunately a few close friends had expressed interest in going and that gave me strength to do this last final gesture before the crematorium gives me a bag of ashes.
In short we went down a corridor to a rather stark industrial room with a wall of buttons and lights and two giant ovens, one with a long cardboard box in front of it on a mechanical platform. Scrawled on top of the box, 15 inches above Tad's once luscious mouth were the words: Name: Vern Crandall, Date of Death: 9-7-2011.
I was a little peeved. He really disliked his proper first name and had only ever been called Tad (or Thad in high school) as far as I could tell. Every time a nurse or doctor would pop their head in a hospital room and ask for "Vern" the two of us would wince slightly. In reality he got more and more used to being called Vern as he approached his death.
As the unskilled funeral director with the bad hair dye blathered on about crematoriums and temperatures, length of burn time and the cremation industry in general -- visibly filling the silence with anything that pops through his mind -- I found myself fighting the urge to reach over and take the lid off the cardboard box. To look at my beloved's face one last time. To perhaps open one eye lid and take in the beauty of his green irises. I wanted to straddle the whole box and grab him, hold him in my arms, pull him back into this world somehow. I wanted to insult the man who had been keeping his body hostage for the last five days instead of letting me continue to wash it with rose water and speak sweet things to it day in and day out. I resisted all of these urges.
With hindsight the last three hours we were together -when I did those very things- were the most precious, the most serene. It took some boldness on my part to listen to my gut and delay the arrival of the dispatch team; to stop the machine of phone calls and arrangements and just name my need: to spend some private time with my beloved's corpse. Once I did our time together was delicious. I got to slow down the clock and simply let him go at a pace that worked better for me. When the two young guys came to fetch him I felt ready. Well not exactly ready. I told myself that I could cling to this body forever and although it felt counter-intuitive I had to let him go with them in order to begin the process of letting go.
And that's what this morning was yet again: an uncomfortable, counter-intuitive thing to do. But the part of me that was reminded again and again that life is short told me I needed to go. The loving parent voice inside me that took me years to finally develop assured me that in ten years I will be so glad I helped push Tad's body into the flames.
Even in my hesitations I however underestimated how hard it would be. Were it not for my friends holding me on both sides I believe I would have fallen on the floor. Today's tears in front of the oven were accompanied by a wrenching of my body, uncontrollable movements of my legs, my hands gripping and tugging on my sports coat with no real objective - just raw sorrow.
When we were done we stepped outside to a sunny Santa Cruz morning. Across the sunlit valley I could see cars driving along the ridge that could only be the UC campus. In between were trees, the cemetery, the memorial gardens, even a glimpse of the massive Costco. I turned around so I could see the heat rising from the smokestack. I wanted to imagine somehow little particulates of Tad floating into the breathtaking San Lorenzo Valley in front of me, the valley where he lived for the last 18 years. I wanted to imagine his particulates feeding the giant redwoods on the slopes and the fish in the bubbling river where I had left my Widower tears just the day before.
My friend Richard had offered to take me back to the out-of-the-way canyon just a few minutes upstream from Tad's house. We had been there before but this time, the day before Tad's cremation, we decided to go deep into the forest, forging our own path til we got to a remote part of the river most tourists never reach. We climbed down carefully avoiding the poison oak and any slippery shale parts that might send us rolling to the boulders at the bottom. When we came out of the redwood forest we were in a sun-bathed part of the river with giant granite boulders and rapids all around. We put on our bathing suits and water-shoes, put our belongings in a waterproof pack and carefully floated and slid down the river in the icy cold, spring-fed water. It was glorious!!
At one point I stopped to lie on a warm river boulder with the sun on my skin and water gushing at an incredible force on both sides. I looked up at the redwoods and the sky. And I devoted it all to Tad. I asked him to come take a look, to enjoy through my body what his was no longer capable of enjoying.
A familiar voice spoke up in my head and told me that talking to the dead was silly but the loving teardrops falling into the river told me otherwise.
The fact that his body is still here on earth and only a short walk from my house was haunting me. I kept fighting this urge to ask if I could come see him; an urge that was only conquered by the memories of other dead bodies I've seen here and there. They can look rather frightening after a few days. I was so afraid that I might see something horrible that I resisted my temptation to run over there.
His continued presence on earth was part of the reason I had a bit of what can only be called a "meltdown" while I was up in San Francisco for about one hour.
I was growing overwhelmed by the presence of all of Tad's belongings. The sempiternal homebody, he loved to keep his house full of nice things. This was at times a source of dissonance between the two of us: "I feel a bit claustrophobic in your house" was met with "Well your house is just as full!" This may be true but at least it's full of MY stuff.
I had a hunch driving to San Francisco on a major highway would be a bit too much for my sensitive system so I had my sweet friend Geof drive me up there. Once we arrived he helped me carry my bags into my apartment, asked if I was okay being alone and left.
I sat down at my computer and received a reminder email of a game night being conducted down in Santa Cruz - a room full of people who may or may not have known Tad. I looked around my place and realized that I didn't have that soothing calm feeling I usually do when I come home. This notion scared me: If I don't feel good at Tad's and I don't feel good in my own little cocoon where can I feel good.
I began to weep (of course) then I began to be afraid of this idea that no place felt comfortable and started hyperventilating. I knew I needed to find someone to drive me back down to Santa Cruz or take the train. But I couldn't seem to walk. All I could do was lie on the floor crying and rocking back and forth.
I tried to catch the subway to get a train but MUNI was running late, my sack weighed a million pounds, I was overwhelmed by the crowd (truth be told I was strongly put off by all the outer signs of fashion and wealth that I saw around me - it all felt incredibly frivolous and vapid).
Finally my friend Gregg agreed to drive me back down here.
I went to the evening festivities where we played a crazy game called "Werewolf" in which we take turns being villagers and werewolves eating someone (in the case of the werewolf) then murdering someone out of revenge (in the case of the villagers). I recognize it doesn't sound very soothing for someone who had just felt his husband shudder for the last time three days previously but in fact it was delightful to be concentrated entirely on something silly and inconsequential.
Coming home afterwards to sleep alone in Tad's house for the first time was difficult but once I stepped into his house -for the first time- I thought I could hear him inside of me, a voice I'd been waiting for since he died.
I don't know if this is something I completely project or if I actually believe that dead people communicate with me. I have had some uncanny experiences in life which at times I explain away by ascribing it to the powerful unconscious and other times I feel there are things happening on a level that I will never really comprehend. Lots of people have tried to convince me that one way is the true way - alas I am a doubting Thomas. I need to put my hand in the open wound in order to believe. And even then - even when very strange things occur in my world that have no logical explanation they tend to lose their credibility with me over time: Did that REALLY happen or did I just dream that?
When we arrived at the crematorium this morning for the final gesture I was sure it was the right thing to do yet hesitant to even get in the car. If no one shows up the funeral folks just do it themselves but they offered to let us attend without failing to mention "Normally we charge for this." Fortunately a few close friends had expressed interest in going and that gave me strength to do this last final gesture before the crematorium gives me a bag of ashes.
In short we went down a corridor to a rather stark industrial room with a wall of buttons and lights and two giant ovens, one with a long cardboard box in front of it on a mechanical platform. Scrawled on top of the box, 15 inches above Tad's once luscious mouth were the words: Name: Vern Crandall, Date of Death: 9-7-2011.
I was a little peeved. He really disliked his proper first name and had only ever been called Tad (or Thad in high school) as far as I could tell. Every time a nurse or doctor would pop their head in a hospital room and ask for "Vern" the two of us would wince slightly. In reality he got more and more used to being called Vern as he approached his death.
As the unskilled funeral director with the bad hair dye blathered on about crematoriums and temperatures, length of burn time and the cremation industry in general -- visibly filling the silence with anything that pops through his mind -- I found myself fighting the urge to reach over and take the lid off the cardboard box. To look at my beloved's face one last time. To perhaps open one eye lid and take in the beauty of his green irises. I wanted to straddle the whole box and grab him, hold him in my arms, pull him back into this world somehow. I wanted to insult the man who had been keeping his body hostage for the last five days instead of letting me continue to wash it with rose water and speak sweet things to it day in and day out. I resisted all of these urges.
With hindsight the last three hours we were together -when I did those very things- were the most precious, the most serene. It took some boldness on my part to listen to my gut and delay the arrival of the dispatch team; to stop the machine of phone calls and arrangements and just name my need: to spend some private time with my beloved's corpse. Once I did our time together was delicious. I got to slow down the clock and simply let him go at a pace that worked better for me. When the two young guys came to fetch him I felt ready. Well not exactly ready. I told myself that I could cling to this body forever and although it felt counter-intuitive I had to let him go with them in order to begin the process of letting go.
And that's what this morning was yet again: an uncomfortable, counter-intuitive thing to do. But the part of me that was reminded again and again that life is short told me I needed to go. The loving parent voice inside me that took me years to finally develop assured me that in ten years I will be so glad I helped push Tad's body into the flames.
Even in my hesitations I however underestimated how hard it would be. Were it not for my friends holding me on both sides I believe I would have fallen on the floor. Today's tears in front of the oven were accompanied by a wrenching of my body, uncontrollable movements of my legs, my hands gripping and tugging on my sports coat with no real objective - just raw sorrow.
When we were done we stepped outside to a sunny Santa Cruz morning. Across the sunlit valley I could see cars driving along the ridge that could only be the UC campus. In between were trees, the cemetery, the memorial gardens, even a glimpse of the massive Costco. I turned around so I could see the heat rising from the smokestack. I wanted to imagine somehow little particulates of Tad floating into the breathtaking San Lorenzo Valley in front of me, the valley where he lived for the last 18 years. I wanted to imagine his particulates feeding the giant redwoods on the slopes and the fish in the bubbling river where I had left my Widower tears just the day before.
My friend Richard had offered to take me back to the out-of-the-way canyon just a few minutes upstream from Tad's house. We had been there before but this time, the day before Tad's cremation, we decided to go deep into the forest, forging our own path til we got to a remote part of the river most tourists never reach. We climbed down carefully avoiding the poison oak and any slippery shale parts that might send us rolling to the boulders at the bottom. When we came out of the redwood forest we were in a sun-bathed part of the river with giant granite boulders and rapids all around. We put on our bathing suits and water-shoes, put our belongings in a waterproof pack and carefully floated and slid down the river in the icy cold, spring-fed water. It was glorious!!
At one point I stopped to lie on a warm river boulder with the sun on my skin and water gushing at an incredible force on both sides. I looked up at the redwoods and the sky. And I devoted it all to Tad. I asked him to come take a look, to enjoy through my body what his was no longer capable of enjoying.
A familiar voice spoke up in my head and told me that talking to the dead was silly but the loving teardrops falling into the river told me otherwise.
Saturday, September 10, 2011
hearing the silence
I don't hear Tad's voice calling out to me anymore. I don't hear him saying: "Greggy - could you bring me some juice?" (Besides my Grams he was the only other person who got away with calling me Greggy)
When I stop all I hear is silence.
Worst of all I can't lean over and touch his soft skin, caress his cheek, hear his snoring, see his near-constant smile, or catch a glimpse of his beautiful green eyes.
I actually could do this if I wanted to. His corpse is only a half-mile from here, waiting in some chilled room to be cremated. I find myself wanting to hop on my bicycle so I can hold him one last time, tell him it's going to be okay. I have to purposely remind myself that his corpse is no longer him - and that it no doubt doesn't look very pretty now that he's been dead a few days.
My hunch is that it will take me months to learn to be at peace without him, to stop yearning for him.
During our illness people regularly said to me: "He's lucky to have you." In a way this made me angry because - though I understand the intention - it felt one-sided. I would respond "Thank you - and I'm lucky to have him." or "We're lucky to have one another." Another phrase I found myself saying a lot to the droves of people who spent time caring for him was: "He's easy to love."
This wasn't always the case - Tad could be gruff and prickly but particularly in these last few years Tad was just so easy to love, so gentle, so simple, so warm. Waking up in the morning next to him I nearly always got a smile and a warm greeting of "Good morning. Did you sleep okay?", even in the midst of severe pain.
I write these words knowing that oftentimes dead people become perfect in the eyes of the living, their mortal status suddenly wipes away any character defects and they become demi-gods. But this really was one of Tad's qualities. I was far from the only one who saw it.
Since his death his friends and I have dealt with handling what to do with his corpse. The funeral company here in town that runs the two cemeteries and the crematorium are no different from the ones I've seen all over the world. They bring you in, wear a maudlin face, tip their head to the side, mutter "I'm sorry for your loss," then try to sell you more stuff.
Our friends' presence gave me the strength to cut to the chase rather quickly, in essence saying "I gave you the body of the man I love the most in the world - now give me back some ashes and tell me how much I owe you."
After squirming a bit the relationship became what it really is: mercantile. We got down to business, signed the multiple documents, wrote the check (for $1736 for the most minimal cremation!!), made small talk while things were being processed and left.
My friends felt bad that it had become so business-y but truth be told I preferred the sincerity of the commercial exchange to the false empathy of the usual funeral exchange. When my heart is broken wide open like this I don't suffer insincerity very well.
Friends have been spending the night with me.
I can't imagine being alone at night right now. I woke up at 4 AM the second night having an asthma attack. Suddenly I couldn't breathe and needed to get some air. Cat hair can cause me to get tight-chested but this felt like something else. I can't help but think it has more to do with the fact that less than 48 hours previously my own beloved man, the man I cherish so deeply, basically suffocated in my arms in that very bed.
As I sat on the sofa waiting for my breath to return I got on my computer and was immediately contacted by Tad's little sister from Texas wanting connection, wanting information.
Like with everything these days I was hit by a hurricane of feelings - at times contradictory. I wanted to be alone to breathe through the tightness in my chest but I wanted to exchange with someone who knew Tad intimately.
I want folks to know that Tad has given me instructions to organize memorials - one in Santa Cruz, one in Tucson) and to distribute some of his things (and I feel a strong sense of duty to keep my promise to Tad and his family) and at the same time I just want to stay in this little bubble and not change a thing, not do any organizing, not contact anyone. In general I want to give people the opportunity to connect with me as the living thing that remains of Tad and at the same time I need to not be overwhelmed by too many solicitations. It's a gentle balance I try to find.
Some moments it feels good to chat with Tad connections and some moments it feels good to be alone. And my needs change on a dime.
My most difficult struggle since Tad died has been this haunting sense that I could have changed the end - I could have done something to make his death more peaceful, less of a struggle.
Tad had made it clear to everyone that he wanted to be resuscitated. Our agreement was that the medical team would try to save him in times of crisis and I would pull the plug if he were brain dead after the intervention. This legally binding request pissed off a lot of doctors who knew that Tad's cancer was terminal.
I had grown so used to vehemently defending this position that I failed to see that on the morning of his death he revoked that agreement three times. Three times he made it clear that he was ready to go and that -de facto- I was no longer to ask for him to be saved.
But as I heard the fluids building up in his chest and he struggled to breathe more and more I found myself wanting to call 911 or to have the nurse and our friends do something. I even said aggressively, "We need to turn him upside down so the fluids can come out!!"
Gently, lovingly Ann just smiled and told me that it wouldn't do much good - instead she turned his head to the side to allow some of it to flow out.
Fortunately the sweet Sally came by yesterday and helped me to see that in fact Tad had put an end to our agreement. Three times that morning he told me quite clearly that he couldn't keep going, that he was too sick, that it was time to die. Among his first words upon awaking were "I don't have many days left on this earth."
By saying he was ready to go he released me from my promise to have him resuscitated at all cost. Alas neither he nor I knew that the struggle would be so difficult. It only lasted a few minutes but during those few minutes he kept trying to breathe and couldn't. He pushed hard. He struggled. And it was unbearable for me. On the other side of that struggle came serenity - I felt his heart slow down after going a million miles an hour. I felt him relax.
It is possible Tad pushed through that in order to die. It is possible he was indeed controlling things.
I think maybe it is easier for me to be angry with myself than it is to be submerged in sorrow that Tad and his beautiful, beautiful life are no longer here.
When I stop all I hear is silence.
Worst of all I can't lean over and touch his soft skin, caress his cheek, hear his snoring, see his near-constant smile, or catch a glimpse of his beautiful green eyes.
I actually could do this if I wanted to. His corpse is only a half-mile from here, waiting in some chilled room to be cremated. I find myself wanting to hop on my bicycle so I can hold him one last time, tell him it's going to be okay. I have to purposely remind myself that his corpse is no longer him - and that it no doubt doesn't look very pretty now that he's been dead a few days.
My hunch is that it will take me months to learn to be at peace without him, to stop yearning for him.
During our illness people regularly said to me: "He's lucky to have you." In a way this made me angry because - though I understand the intention - it felt one-sided. I would respond "Thank you - and I'm lucky to have him." or "We're lucky to have one another." Another phrase I found myself saying a lot to the droves of people who spent time caring for him was: "He's easy to love."
This wasn't always the case - Tad could be gruff and prickly but particularly in these last few years Tad was just so easy to love, so gentle, so simple, so warm. Waking up in the morning next to him I nearly always got a smile and a warm greeting of "Good morning. Did you sleep okay?", even in the midst of severe pain.
I write these words knowing that oftentimes dead people become perfect in the eyes of the living, their mortal status suddenly wipes away any character defects and they become demi-gods. But this really was one of Tad's qualities. I was far from the only one who saw it.
Since his death his friends and I have dealt with handling what to do with his corpse. The funeral company here in town that runs the two cemeteries and the crematorium are no different from the ones I've seen all over the world. They bring you in, wear a maudlin face, tip their head to the side, mutter "I'm sorry for your loss," then try to sell you more stuff.
Our friends' presence gave me the strength to cut to the chase rather quickly, in essence saying "I gave you the body of the man I love the most in the world - now give me back some ashes and tell me how much I owe you."
After squirming a bit the relationship became what it really is: mercantile. We got down to business, signed the multiple documents, wrote the check (for $1736 for the most minimal cremation!!), made small talk while things were being processed and left.
My friends felt bad that it had become so business-y but truth be told I preferred the sincerity of the commercial exchange to the false empathy of the usual funeral exchange. When my heart is broken wide open like this I don't suffer insincerity very well.
Friends have been spending the night with me.
I can't imagine being alone at night right now. I woke up at 4 AM the second night having an asthma attack. Suddenly I couldn't breathe and needed to get some air. Cat hair can cause me to get tight-chested but this felt like something else. I can't help but think it has more to do with the fact that less than 48 hours previously my own beloved man, the man I cherish so deeply, basically suffocated in my arms in that very bed.
As I sat on the sofa waiting for my breath to return I got on my computer and was immediately contacted by Tad's little sister from Texas wanting connection, wanting information.
Like with everything these days I was hit by a hurricane of feelings - at times contradictory. I wanted to be alone to breathe through the tightness in my chest but I wanted to exchange with someone who knew Tad intimately.
I want folks to know that Tad has given me instructions to organize memorials - one in Santa Cruz, one in Tucson) and to distribute some of his things (and I feel a strong sense of duty to keep my promise to Tad and his family) and at the same time I just want to stay in this little bubble and not change a thing, not do any organizing, not contact anyone. In general I want to give people the opportunity to connect with me as the living thing that remains of Tad and at the same time I need to not be overwhelmed by too many solicitations. It's a gentle balance I try to find.
Some moments it feels good to chat with Tad connections and some moments it feels good to be alone. And my needs change on a dime.
My most difficult struggle since Tad died has been this haunting sense that I could have changed the end - I could have done something to make his death more peaceful, less of a struggle.
Tad had made it clear to everyone that he wanted to be resuscitated. Our agreement was that the medical team would try to save him in times of crisis and I would pull the plug if he were brain dead after the intervention. This legally binding request pissed off a lot of doctors who knew that Tad's cancer was terminal.
I had grown so used to vehemently defending this position that I failed to see that on the morning of his death he revoked that agreement three times. Three times he made it clear that he was ready to go and that -de facto- I was no longer to ask for him to be saved.
But as I heard the fluids building up in his chest and he struggled to breathe more and more I found myself wanting to call 911 or to have the nurse and our friends do something. I even said aggressively, "We need to turn him upside down so the fluids can come out!!"
Gently, lovingly Ann just smiled and told me that it wouldn't do much good - instead she turned his head to the side to allow some of it to flow out.
Fortunately the sweet Sally came by yesterday and helped me to see that in fact Tad had put an end to our agreement. Three times that morning he told me quite clearly that he couldn't keep going, that he was too sick, that it was time to die. Among his first words upon awaking were "I don't have many days left on this earth."
By saying he was ready to go he released me from my promise to have him resuscitated at all cost. Alas neither he nor I knew that the struggle would be so difficult. It only lasted a few minutes but during those few minutes he kept trying to breathe and couldn't. He pushed hard. He struggled. And it was unbearable for me. On the other side of that struggle came serenity - I felt his heart slow down after going a million miles an hour. I felt him relax.
It is possible Tad pushed through that in order to die. It is possible he was indeed controlling things.
I think maybe it is easier for me to be angry with myself than it is to be submerged in sorrow that Tad and his beautiful, beautiful life are no longer here.
Thursday, September 8, 2011
in these arms
In all the years I have been on this earth I have seen more than my share of corpses. Even as a child I remember seeing dead bodies at funerals. I'm almost incredulous when my middle age friends tell me they're enduring their first loss.
But in all those years I have never been present when someone actually dies.
Not until yesterday.
A short time after I wrote the last blog I went back in to check on Tad. He had told me he wanted to stay in bed - a notion that frightened me a bit since we both knew it was a sign of his body slowing down. At my prodding he ate a full breakfast then took all his morning meds. Truth be told he and I agreed to slip him a few extra meds beyond the hospice agreement - some antibiotics just in case he got an infection.
He told me he was going to stay in the bedroom because he was feeling "icky". When I asked for more details he said he had new pains in his limbs -which didn't surprise me- but also he felt nauseous and had a headache. He said he didn't feel good. His words were more garbled than they had been an hour earlier. This frightened him. I grabbed a bowl for him to throw up but he didn't - he said he couldn't. He had been sweating more that night than previously so I found a washcloth and tried to soothe his agitation by bathing him gently and holding his hand.
He told me, "If I'm going to feel like this I can't keep going. I want this to end."
I looked him in the eye and named it more explicitly: "You mean you are ready to die?"
When he said yes I assured him he had all my support. For months now he has been concerned that he will let his family down by dying.
The new symptoms frightened me. The pains in the arms were edemas caused by broken blood vessels much like the new blood clot on his tongue. But the headaches and nausea only made me think of a burst vein in his brain. His speech began to get more slurred - and he told me so.
"Something's wrong. I can't do this." He was crying, flailing and asking for help.
I called the hospice nurse who came immediately and assessed the situation. She stood by lovingly and told me that this was just part of the process.
I felt my Mother Lion come up and wanted to scream at her: "Do something!! Make this stop!!" But I didn't. I lied down next to Tad.
Later our friend Carl who I had texted to come to the house quickly told me that - while I was conferring with the nurse in the living room Tad --despite all of the heaving, the nausea, the unbearable pain, the difficulty speaking-- looked at him and with gestures and words said: "I (pointing to his chest) am OK (making the OK gesture with his fingers) to die (moving his hand across his adam's apple). How is Greg?"
Within minutes of this he began to have what some call a deathbed "rattle" - that is his breathing changed completely and he began developing an enormous amount of fluid. I personally have seen people stay in that state of rattling breath for days, even weeks. To that end the nurse had called in to have a hospital bed delivered to the house. With Jorge - the in home worker - and Carl we were imagining different geometries in the living room so that we could fit it in there comfortably. we were wondering how we could get Tad who weighed 200 pounds from the bedroom to the living room via the narrow corridor.
Then his rattle changed to a gurgle. There was more fluid in his system than I had ever heard before. All I could think was "he's drowning! we have to do something". This was the most painful part for me - all we could do was turn his head and help the fluids flow out of his mouth on the side.
I am torn between anger at the fact that the nurse didn't intervene more to keep the fluid from backing up in his lungs and relief because he had said more than once that morning "I am ready to go."
There was a moment of peace - but to get to it he had to go through the turmoil of gasping for breath until no air could be found.
I lie there next to him, my right arm around his chest, my left behind his head, my face against his shoulder while Carl and Jorge sat holding his hand and arm - the nurse standing lovingly behind them. I felt his heart accelerate wildly, I watched his jugular pounding just below my chin. Then we all got very quiet. His heart slowed down. At some point - some unknowable point - his heart stopped.
It was absolutely uneventful. No angels played trumpets. No spirit lifted from his body and floated upwards. His heart was beating one minute then it wasn't. I looked up at everyone and said, "I'm not sure but I think he's gone"."
The nurse searched for a pulse and finding none acquiesced. Carl burst into tears.
I have no words for what I felt - I am still not sure what I feel. I imagine the emotions will become more and more identifiable as time goes by.
For the next four hours I spent a lot of time with Tad - Tad's body. I'm not sure which it was. I took off his boxers and bathed him with a warm towel and rose water. I caressed him. I talked to him. Jorge and Carl made lunch and we all sat around him and had lunch telling stories about Tad, the sun filling the whole room for the first time in what feels like years.
I kept coming back to his gentle lips, the hair on his chest, his beautiful warm hands that loved to find mine and hold it -- I couldn't stop touching his body even though I could feel the temperature dropping, the sweat drying up, the color changing.
Amazingly all of this happened with sweetness and serenity. I went out into the garden to be away from him then found I needed to be near him some more. I called his dad first then came back in to get one more glimpse of his beautiful green eyes before I shut the lids. His pupils were enormous. Every time I came close I could swear I saw his chest lift - to pull in air - a movement I had scrutinized over and over again so many times. At some point Astra had climbed up on the bed and fallen asleep between his legs.
When the agreed upon time came the cemetery folks took his body away through his gorgeous garden in the bright Santa Cruz sun. When I mentioned I didn't want to be separated from his body Carl reminded me that I had every right to keep it there for a few days if I wanted; that we could send them back and have them come another time. There was no law stating I had to have him sent to the mortuary right away. I was tempted but I knew that I had to let go. I was clinging to a corpse - to a physical sensation - I was clinging to a Tad who was no longer. The sooner his body was gone the sooner I could start connecting with the Tad inside me, the one that will live with me no doubt til the day I myself die.
My friends are here - surrounding me with love and support. This morning we will go to the mortuary and begin the plans for the cremation. Tad asked me to organize a memorial here in Santa Cruz and another in Tucson where he was born. It's my deep honor to take his remains there and to represent the Crandall - Rowe family among the much larger Westmoreland - Crandall clan of Tucson.
Today our bedroom where I just spent a sound night is full of pictures of Tad and me as well as flowers brought in by Carl. The ring I gave him for our commitment ceremony is solidly fixed on my left hand next to the one he gave me.
I have many big decisions to make in the near future but for now I can relax. I went out for dinner with two of his friends last night and felt so much serenity not having to wonder about whether he was safe or not, whether we are at the right hospital getting the right care, whether he will live or die. It was sweet to just be out in Santa Cruz with friends - to come back to a world where in appearance no one is sick.
But in all those years I have never been present when someone actually dies.
Not until yesterday.
A short time after I wrote the last blog I went back in to check on Tad. He had told me he wanted to stay in bed - a notion that frightened me a bit since we both knew it was a sign of his body slowing down. At my prodding he ate a full breakfast then took all his morning meds. Truth be told he and I agreed to slip him a few extra meds beyond the hospice agreement - some antibiotics just in case he got an infection.
He told me he was going to stay in the bedroom because he was feeling "icky". When I asked for more details he said he had new pains in his limbs -which didn't surprise me- but also he felt nauseous and had a headache. He said he didn't feel good. His words were more garbled than they had been an hour earlier. This frightened him. I grabbed a bowl for him to throw up but he didn't - he said he couldn't. He had been sweating more that night than previously so I found a washcloth and tried to soothe his agitation by bathing him gently and holding his hand.
He told me, "If I'm going to feel like this I can't keep going. I want this to end."
I looked him in the eye and named it more explicitly: "You mean you are ready to die?"
When he said yes I assured him he had all my support. For months now he has been concerned that he will let his family down by dying.
The new symptoms frightened me. The pains in the arms were edemas caused by broken blood vessels much like the new blood clot on his tongue. But the headaches and nausea only made me think of a burst vein in his brain. His speech began to get more slurred - and he told me so.
"Something's wrong. I can't do this." He was crying, flailing and asking for help.
I called the hospice nurse who came immediately and assessed the situation. She stood by lovingly and told me that this was just part of the process.
I felt my Mother Lion come up and wanted to scream at her: "Do something!! Make this stop!!" But I didn't. I lied down next to Tad.
Later our friend Carl who I had texted to come to the house quickly told me that - while I was conferring with the nurse in the living room Tad --despite all of the heaving, the nausea, the unbearable pain, the difficulty speaking-- looked at him and with gestures and words said: "I (pointing to his chest) am OK (making the OK gesture with his fingers) to die (moving his hand across his adam's apple). How is Greg?"
Within minutes of this he began to have what some call a deathbed "rattle" - that is his breathing changed completely and he began developing an enormous amount of fluid. I personally have seen people stay in that state of rattling breath for days, even weeks. To that end the nurse had called in to have a hospital bed delivered to the house. With Jorge - the in home worker - and Carl we were imagining different geometries in the living room so that we could fit it in there comfortably. we were wondering how we could get Tad who weighed 200 pounds from the bedroom to the living room via the narrow corridor.
Then his rattle changed to a gurgle. There was more fluid in his system than I had ever heard before. All I could think was "he's drowning! we have to do something". This was the most painful part for me - all we could do was turn his head and help the fluids flow out of his mouth on the side.
I am torn between anger at the fact that the nurse didn't intervene more to keep the fluid from backing up in his lungs and relief because he had said more than once that morning "I am ready to go."
There was a moment of peace - but to get to it he had to go through the turmoil of gasping for breath until no air could be found.
I lie there next to him, my right arm around his chest, my left behind his head, my face against his shoulder while Carl and Jorge sat holding his hand and arm - the nurse standing lovingly behind them. I felt his heart accelerate wildly, I watched his jugular pounding just below my chin. Then we all got very quiet. His heart slowed down. At some point - some unknowable point - his heart stopped.
It was absolutely uneventful. No angels played trumpets. No spirit lifted from his body and floated upwards. His heart was beating one minute then it wasn't. I looked up at everyone and said, "I'm not sure but I think he's gone"."
The nurse searched for a pulse and finding none acquiesced. Carl burst into tears.
I have no words for what I felt - I am still not sure what I feel. I imagine the emotions will become more and more identifiable as time goes by.
For the next four hours I spent a lot of time with Tad - Tad's body. I'm not sure which it was. I took off his boxers and bathed him with a warm towel and rose water. I caressed him. I talked to him. Jorge and Carl made lunch and we all sat around him and had lunch telling stories about Tad, the sun filling the whole room for the first time in what feels like years.
I kept coming back to his gentle lips, the hair on his chest, his beautiful warm hands that loved to find mine and hold it -- I couldn't stop touching his body even though I could feel the temperature dropping, the sweat drying up, the color changing.
Amazingly all of this happened with sweetness and serenity. I went out into the garden to be away from him then found I needed to be near him some more. I called his dad first then came back in to get one more glimpse of his beautiful green eyes before I shut the lids. His pupils were enormous. Every time I came close I could swear I saw his chest lift - to pull in air - a movement I had scrutinized over and over again so many times. At some point Astra had climbed up on the bed and fallen asleep between his legs.
When the agreed upon time came the cemetery folks took his body away through his gorgeous garden in the bright Santa Cruz sun. When I mentioned I didn't want to be separated from his body Carl reminded me that I had every right to keep it there for a few days if I wanted; that we could send them back and have them come another time. There was no law stating I had to have him sent to the mortuary right away. I was tempted but I knew that I had to let go. I was clinging to a corpse - to a physical sensation - I was clinging to a Tad who was no longer. The sooner his body was gone the sooner I could start connecting with the Tad inside me, the one that will live with me no doubt til the day I myself die.
My friends are here - surrounding me with love and support. This morning we will go to the mortuary and begin the plans for the cremation. Tad asked me to organize a memorial here in Santa Cruz and another in Tucson where he was born. It's my deep honor to take his remains there and to represent the Crandall - Rowe family among the much larger Westmoreland - Crandall clan of Tucson.
Today our bedroom where I just spent a sound night is full of pictures of Tad and me as well as flowers brought in by Carl. The ring I gave him for our commitment ceremony is solidly fixed on my left hand next to the one he gave me.
I have many big decisions to make in the near future but for now I can relax. I went out for dinner with two of his friends last night and felt so much serenity not having to wonder about whether he was safe or not, whether we are at the right hospital getting the right care, whether he will live or die. It was sweet to just be out in Santa Cruz with friends - to come back to a world where in appearance no one is sick.
Wednesday, September 7, 2011
exhausted
Every Wednesday for the last 18 months I have gone to sit with dying people. Well almost every Wednesday.
It's hard to get people to understand just how full I feel when I leave there at the end of the day. In essence my gig consists in welcoming with unconditional love a person or a family that have been told they only have a short time to live. I do this as part of a volunteer team in a beautiful spacious Victorian house with a nurse directing us. It is gentle and sweet and life-affirming.
You would think I would be able to find a similar sense of calm and love at home with my dear, dear partner.
But I can't.
I still wake up one or two times in the night to lean over and hear if he is still breathing. Since he has sleep apnea there are plenty of times when he's not breathing and - in the absence of any air sound - my brain concludes that the inevitable has finally happened. It only lasts a few seconds of course, if that. In that flash of a moment I get a glimpse of what it might feel like to no longer have Tad alive.
Just a glimpse. That glimpse is a mixture of pain and relief and devastation.
This morning Tad awoke and in his morning stupor told me with a loving smile: "My days are short here on earth. I'm not going to be alive much longer." I asked him how he does it, how he manages with a smile and he replied: "One minute at a time."
He and I both see that his appetite is going down and his fatigue is going up. We both see that his circulatory system can no longer hold the blood inside. We see that his nose bleeds, bruises, swelling, night chills and sweats are all due to the fact that his blood doesn't have any of its normal properties.
Sadly this causes him incredible pain, pain that even massive amounts of narcotics can't seem to attenuate. This is disappointing to me as I've always lived with the fantasy that pain is the one thing medicine can control. In numerous trainings and all the hospitals I've worked in over the years that is the one myth that keeps giving: "we" have the means to give people pain-free ends of life.
Tad's mental state is already slightly altered by the heavy narcotics - though he has lots of moments of clarity. I imagine that if we gave him enough drugs to actually make him pain-free he would simply sleep all day. As it is, we already counter the somnolence with a mild stimulant each morning.
So how do I find serenity? How do I transform this painful, overwhelming, tragic situation (that will end with me walking away and him a cadaver) into one where I sit by peacefully just beaming him love?
How do I keep my strong hold on love and life knowing that one day soon his body will be here but his personality, his essence will not?
And why is this so difficult to accept? Isn't death one of the most common things on earth along with birth, sex and illness?
I understand why we humans spend lots of time forgetting the fact that this body is only temporary. To live with that reality front and center every moment is exhausting.
It's hard to get people to understand just how full I feel when I leave there at the end of the day. In essence my gig consists in welcoming with unconditional love a person or a family that have been told they only have a short time to live. I do this as part of a volunteer team in a beautiful spacious Victorian house with a nurse directing us. It is gentle and sweet and life-affirming.
You would think I would be able to find a similar sense of calm and love at home with my dear, dear partner.
But I can't.
I still wake up one or two times in the night to lean over and hear if he is still breathing. Since he has sleep apnea there are plenty of times when he's not breathing and - in the absence of any air sound - my brain concludes that the inevitable has finally happened. It only lasts a few seconds of course, if that. In that flash of a moment I get a glimpse of what it might feel like to no longer have Tad alive.
Just a glimpse. That glimpse is a mixture of pain and relief and devastation.
This morning Tad awoke and in his morning stupor told me with a loving smile: "My days are short here on earth. I'm not going to be alive much longer." I asked him how he does it, how he manages with a smile and he replied: "One minute at a time."
He and I both see that his appetite is going down and his fatigue is going up. We both see that his circulatory system can no longer hold the blood inside. We see that his nose bleeds, bruises, swelling, night chills and sweats are all due to the fact that his blood doesn't have any of its normal properties.
Sadly this causes him incredible pain, pain that even massive amounts of narcotics can't seem to attenuate. This is disappointing to me as I've always lived with the fantasy that pain is the one thing medicine can control. In numerous trainings and all the hospitals I've worked in over the years that is the one myth that keeps giving: "we" have the means to give people pain-free ends of life.
Tad's mental state is already slightly altered by the heavy narcotics - though he has lots of moments of clarity. I imagine that if we gave him enough drugs to actually make him pain-free he would simply sleep all day. As it is, we already counter the somnolence with a mild stimulant each morning.
So how do I find serenity? How do I transform this painful, overwhelming, tragic situation (that will end with me walking away and him a cadaver) into one where I sit by peacefully just beaming him love?
How do I keep my strong hold on love and life knowing that one day soon his body will be here but his personality, his essence will not?
And why is this so difficult to accept? Isn't death one of the most common things on earth along with birth, sex and illness?
I understand why we humans spend lots of time forgetting the fact that this body is only temporary. To live with that reality front and center every moment is exhausting.
Monday, September 5, 2011
circles
The last two days of hospice were deeply marked by the kind gestures of the caring circles of folks who surround us.
Carl came by and lovingly made meals while Tad and I chatted separately with folks. Richard picked me up and shared with me his secret path down to a gorge and an incredible series of river rapids and tide pools where we soak in the San Lorenzo. Paula offered us some amazing Mexican food with a yummy apple cobbler. Ana dropped a little basket of organic vegetables on the front porch. Ron set himself up in the garden trimming, weeding and pruning for a couple hours. Lyse called from Quebec and let me blow off steam - then promised she'd call back each morning just in case.
The hospice social worker sat down with me for a generous two hours helping me devise some kind of work schedule for paid and volunteer workers so that I can let go of many tasks and simply be with Tad. The process alone was a painful one since it meant embracing our painful near-death reality with fresh eyes. Not surprisingly it also had me looking at some of my oldest, most deeply-rooted neurotic habits and how they're coming up like daisies in springtime.
In essence Tad and I spend our time in one of four different modes:
1 - Doing - Making meals, eating, getting meds, running to the store, answering the phone. This mostly keeps me going since Tad has developed a new overwhelming pain in his left leg that keeps him from being able to move around without wincing and moaning. Though - Tad being Tad he still insists on walking from one end of the house to the other rather than use a wheelchair.
2 - Talking about the situation - This is close to the above topic. We spend time talking about visitors, what time to do things, about pain, poop, pee, more pain and pills. We discuss whether or not to call hospice for help, what TV show to watch, what to make for dinner. This also includes talking about things like the "Transfer on death" order for the DMV, the unpaid bills or what to do with something after Tad dies.
Both of the above tend to happen easily and without a lot of thought. We're aware that Tad is dying but the focus is mainly on the little things of living.
3 - Checking out - This is generally done through some kind of electronic means. TV and DVD are the easiest for Tad. Internet black holes seem to work better for me (How many times can you research something new on wikipedia in a day?). Films are a great way to plunge into other people's story of tragedy and loss, joy and victory over evil. They take us out of our own thoughts.
4 - Talking about the big picture - We generally really take the time to talk about the big picture, the deeper look at what is really happening to us in two different modes.
4A - Positive - We find ourselves lying side by side, holding hands or caressing an arm and remembering how lucky we are to be alive. We kiss and feel the incredible love that has brought us this far. We talk about some amazing moment that moved us to tears from the day before or a phone conversation from someone who just found it. Curiously in the Positive department I would also add the tearful discussions about the unfairness of the disease or the fact that we will be apart.
4B - Negative - Once in a while we find ourselves in a dark place of anger or resentment - Tad can't seem to make meaning out of what's happening to him and begins to ask "why". Not in a way that calls for an answer but more to the world, to the gods as in "why me?!" or rather "WHY ME GODDAMMIT!!!"
The role of physical pain: what I've noticed is that when Tad is in physical pain it is much more difficult for us to be in 4A. We're grateful for hospice for finally having the courage to give him the level of narcotics he actually needs - instead of the dose that makes the doctor comfortable. But sadly after having one the war against a shoulder pain that has been dogging him for months, he developed an incredible pain in his lower left leg and the pain meds don't seem to get it.
As of this morning he is starting on a new medication that functions on the "neural pain pathways" (though I'm not sure what the other pathways are....seems to me all pain is neural at some point in its pain lifespan). He was beginning to get some relief already this evening.
He really would like to be more mobile before he starts to really go downhill. We've been told by several people that he will most likely get more and more tired, lose his appetite and energy then slowly just fall asleep til he dies. He seems quite determined to not do that yet. He still has about 80% of his usual appetite. He still gets up to go to the bathroom on his own. But today, unlike yesterday, his pain was so severe as to keep him from walking in the garden - despite the very attractive heat that has finally wound its way to Santa Cruz.
And one last thing....he IS eager to have a little pro-funeral fiesta. Doing anything on Saturday Sept 10? You may want to be in Santa Cruz for a little celebration. Tad and I figured we should do it sooner than later so that he is sure to attend.
PS There is one other way in which we manage our time - a fifth mode. It is often brief but it has to do with the arrival of beloved members of our circles. As soon as someone shows up and offers love or to do something loving we both start to cry. The mostly unsolicited demonstrations of love and concern almost always take us to a place of deep vulnerability and gratitude. What else could make us go so quickly to precious tears??
Carl came by and lovingly made meals while Tad and I chatted separately with folks. Richard picked me up and shared with me his secret path down to a gorge and an incredible series of river rapids and tide pools where we soak in the San Lorenzo. Paula offered us some amazing Mexican food with a yummy apple cobbler. Ana dropped a little basket of organic vegetables on the front porch. Ron set himself up in the garden trimming, weeding and pruning for a couple hours. Lyse called from Quebec and let me blow off steam - then promised she'd call back each morning just in case.
The hospice social worker sat down with me for a generous two hours helping me devise some kind of work schedule for paid and volunteer workers so that I can let go of many tasks and simply be with Tad. The process alone was a painful one since it meant embracing our painful near-death reality with fresh eyes. Not surprisingly it also had me looking at some of my oldest, most deeply-rooted neurotic habits and how they're coming up like daisies in springtime.
In essence Tad and I spend our time in one of four different modes:
1 - Doing - Making meals, eating, getting meds, running to the store, answering the phone. This mostly keeps me going since Tad has developed a new overwhelming pain in his left leg that keeps him from being able to move around without wincing and moaning. Though - Tad being Tad he still insists on walking from one end of the house to the other rather than use a wheelchair.
2 - Talking about the situation - This is close to the above topic. We spend time talking about visitors, what time to do things, about pain, poop, pee, more pain and pills. We discuss whether or not to call hospice for help, what TV show to watch, what to make for dinner. This also includes talking about things like the "Transfer on death" order for the DMV, the unpaid bills or what to do with something after Tad dies.
Both of the above tend to happen easily and without a lot of thought. We're aware that Tad is dying but the focus is mainly on the little things of living.
3 - Checking out - This is generally done through some kind of electronic means. TV and DVD are the easiest for Tad. Internet black holes seem to work better for me (How many times can you research something new on wikipedia in a day?). Films are a great way to plunge into other people's story of tragedy and loss, joy and victory over evil. They take us out of our own thoughts.
4 - Talking about the big picture - We generally really take the time to talk about the big picture, the deeper look at what is really happening to us in two different modes.
4A - Positive - We find ourselves lying side by side, holding hands or caressing an arm and remembering how lucky we are to be alive. We kiss and feel the incredible love that has brought us this far. We talk about some amazing moment that moved us to tears from the day before or a phone conversation from someone who just found it. Curiously in the Positive department I would also add the tearful discussions about the unfairness of the disease or the fact that we will be apart.
4B - Negative - Once in a while we find ourselves in a dark place of anger or resentment - Tad can't seem to make meaning out of what's happening to him and begins to ask "why". Not in a way that calls for an answer but more to the world, to the gods as in "why me?!" or rather "WHY ME GODDAMMIT!!!"
The role of physical pain: what I've noticed is that when Tad is in physical pain it is much more difficult for us to be in 4A. We're grateful for hospice for finally having the courage to give him the level of narcotics he actually needs - instead of the dose that makes the doctor comfortable. But sadly after having one the war against a shoulder pain that has been dogging him for months, he developed an incredible pain in his lower left leg and the pain meds don't seem to get it.
As of this morning he is starting on a new medication that functions on the "neural pain pathways" (though I'm not sure what the other pathways are....seems to me all pain is neural at some point in its pain lifespan). He was beginning to get some relief already this evening.
He really would like to be more mobile before he starts to really go downhill. We've been told by several people that he will most likely get more and more tired, lose his appetite and energy then slowly just fall asleep til he dies. He seems quite determined to not do that yet. He still has about 80% of his usual appetite. He still gets up to go to the bathroom on his own. But today, unlike yesterday, his pain was so severe as to keep him from walking in the garden - despite the very attractive heat that has finally wound its way to Santa Cruz.
And one last thing....he IS eager to have a little pro-funeral fiesta. Doing anything on Saturday Sept 10? You may want to be in Santa Cruz for a little celebration. Tad and I figured we should do it sooner than later so that he is sure to attend.
PS There is one other way in which we manage our time - a fifth mode. It is often brief but it has to do with the arrival of beloved members of our circles. As soon as someone shows up and offers love or to do something loving we both start to cry. The mostly unsolicited demonstrations of love and concern almost always take us to a place of deep vulnerability and gratitude. What else could make us go so quickly to precious tears??
Sunday, September 4, 2011
waiting for death with love
Yesterday we woke to the reality that we were now home, no longer fighting an elusive enemy and knowing that in some undetermined time -- maybe days maybe weeks according to the doctors -- Tad will die.
We found ourselves sitting on the sofa with our morning coffee wondering "So what do we do now?"
In my own no doubt romantic version of End of Life I grabbed pen and paper and started a list asking him what people, places and things he would like to see or do. Fly to Hawaii? Take a drive around San Francisco? Have friends come by one at a time to say good-bye?
True to his beautiful simple self the list was very short: eat seafood on the wharf, go for a drive along West Cliff (he later struck that from the list). Mostly it was about living our life normally at home, tending the garden, going for walks, watching movies, eating yummy meals together (last night's mac and cheese with big chunks of roasted chicken was a big hit!), seeing the occasional friends who drop by....
But then later in the day he found himself feeling aimless again: Should we finish that tiling project in the kitchen? repaint the bedroom? buy something on credit?
His desires come and go. But one thing is very clear: sleep is not a welcome activity. Tad struggled to fall asleep the last two nights and woke up bright and early, perky as ever.
His mobility has increased since we got home. He can now -with difficulty - move from room to room in the house and even take himself out for a walk in the garden.
I found myself experiencing a similar sense of aimlessness. Besides the small tasks of emptying the urinal, making meals, washing up, counting pills... I too am without a bigger project. I tell myself it's not exactly the moment to be starting some groundbreaking new plan.
One of the ways my crazy mind copes with this aimlessness is by wandering frequently into some imagined post-Tad future: what will I do with all this stuff? should I rent a storage space? how long will it take me to get through the sorrow? where should I live? should I open a practice here in Santa Cruz? Or just move back to San Francisco completely and put an end to my five and half year flirtation with this community? should I go relax in France for a few months? what about the cat? how will I ever be able to handle the day she dies? I noticed myself tossing these scenarios out to various friends in the hopes they would tell me what to do.
Fortunately I know it is not time to make any longer-term decisions. Instead I actually calm my rapid brain by closing my eyes and taking my imagination to hokey scenes of beaches and palm trees, to memories of paradise I've experienced in my fifty years. It's a short respite from my crazed brain but it helps momentarily.
At different points of the day Tad and I had the opportunity to visit the palette of emotions that come with living such an intense moment of life.
Most of the hours were filled with calm, with smiles, with loving gestures.
Other times we moved through fear when we stopped and talked about the bigger picture of what's really happening to us: what will death from leukemia look like? (mostly more and more sleep until he dies in his sleep we're told), can we "shorten" the process if it becomes unbearable?, does it make sense to stop all the medications just because hospice's budget doesn't cover them?, should we really drop the masks, the fresh flowers and the other possible threats of infection?, is my burgeoning cough a virus and will it cause Tad to die faster?
Then there are --mostly unpredictable-- moments of deep sorrow: for instance standing at Trader Joe's (yet again) with my beloved friend Julia and bursting into tears in the frozen food section while she gently hugged and rocked me. I had a hunch it would be a tough visit and thus asked her to hold my hand while I shopped.
Then later at home crying together when suddenly from nowhere one of us uttered tearfully: "I'm going to miss you so much."
Sometimes we feel sorrow mixed with resentment when one of us says out loud the thoughts of injustice we mostly manage to avoid: "Why? Why this? Why now? Why us?"
I must say the main source of strength for me is and often has been Tad's capacity to lovingly smile. He's always had a rather cantankerous side to him and when this illness first began I feared that side would dominate. He truly amazed me by sitting through hospitalization after hospitalization with an incredible elegance: polite words for each caregiver, a playful smile even in his pain, thoughtfulness and concern for the people attending his needs. I see today how much this smile carries me; how much it helps me get through.
During a sorrow moment yesterday he held me gently caressing my hair while I sobbed and asked whoever might hear me "How will I possibly find love so dear again?" He responded that the incredibly sweet love I get from him is simply him mirroring my love back to me. In his mind's eye somehow his love for me is nurtured by my love for him and vice-versa - like a juicy vicious circle, only not vicious.
(There's a famous couples psychologist who actually observed and quantified the amount of loving gestures a couple may exchange. He became very skilled at predicting divorce by observing when the ratio of "Love gestures" versus "contempt gestures" fell below 5:1. He observes that "masterful couples" generally maintain a ratio of 25 to 1.)
The deeper calmer part of me knows I will be fine when Tad is gone. I know that I will go through the sorrow, the rage, the letting go at my pace. I even know - from having seen many friends die tragically young - that Tad's love, his essence will be a continuous part of my inner world.
While bawling in his arms wondering aloud how I'd get by without him, he took my face in his warm hands, looked me deep in the eyes and with a big smile said, "Are you kidding me?! You have a whole world to help change!"
Perhaps we humans stay in loving couples because they help us aspire to be our highest selves. I for one am deeply grateful to have had five years and 100 days with the beautiful and loving Vern Raymond Thaddeus Crandall - who has taught me so much about love.
At the end of the day the hospice nurse came by to check on us. Tad asked her if there was someone at the hospice who could help us make plans for a memorial service. I've often imagined how after the cremation I would gather the many people who knew Tad and actually hear from them how his love changed their lives. Then it occurred to me - why wait til he is dead? "What if we do it before you die?" I asked. In his usual modesty he sort of hesitated but I could see he was also intrigued by the idea of being surrounded by love - by having his love mirrored back at him by dozens of folks.
We'll see if the seeds germinate.
In the meantime my deepest wish is that his love lives long in all of our hearts and minds, and particularly mine ;-)!
PS - If you've managed to get this far I encourage you to leave a little note of love on here. It always helps us to be reminded of how much love we have around us.
We found ourselves sitting on the sofa with our morning coffee wondering "So what do we do now?"
In my own no doubt romantic version of End of Life I grabbed pen and paper and started a list asking him what people, places and things he would like to see or do. Fly to Hawaii? Take a drive around San Francisco? Have friends come by one at a time to say good-bye?
True to his beautiful simple self the list was very short: eat seafood on the wharf, go for a drive along West Cliff (he later struck that from the list). Mostly it was about living our life normally at home, tending the garden, going for walks, watching movies, eating yummy meals together (last night's mac and cheese with big chunks of roasted chicken was a big hit!), seeing the occasional friends who drop by....
But then later in the day he found himself feeling aimless again: Should we finish that tiling project in the kitchen? repaint the bedroom? buy something on credit?
His desires come and go. But one thing is very clear: sleep is not a welcome activity. Tad struggled to fall asleep the last two nights and woke up bright and early, perky as ever.
His mobility has increased since we got home. He can now -with difficulty - move from room to room in the house and even take himself out for a walk in the garden.
I found myself experiencing a similar sense of aimlessness. Besides the small tasks of emptying the urinal, making meals, washing up, counting pills... I too am without a bigger project. I tell myself it's not exactly the moment to be starting some groundbreaking new plan.
One of the ways my crazy mind copes with this aimlessness is by wandering frequently into some imagined post-Tad future: what will I do with all this stuff? should I rent a storage space? how long will it take me to get through the sorrow? where should I live? should I open a practice here in Santa Cruz? Or just move back to San Francisco completely and put an end to my five and half year flirtation with this community? should I go relax in France for a few months? what about the cat? how will I ever be able to handle the day she dies? I noticed myself tossing these scenarios out to various friends in the hopes they would tell me what to do.
Fortunately I know it is not time to make any longer-term decisions. Instead I actually calm my rapid brain by closing my eyes and taking my imagination to hokey scenes of beaches and palm trees, to memories of paradise I've experienced in my fifty years. It's a short respite from my crazed brain but it helps momentarily.
At different points of the day Tad and I had the opportunity to visit the palette of emotions that come with living such an intense moment of life.
Most of the hours were filled with calm, with smiles, with loving gestures.
Other times we moved through fear when we stopped and talked about the bigger picture of what's really happening to us: what will death from leukemia look like? (mostly more and more sleep until he dies in his sleep we're told), can we "shorten" the process if it becomes unbearable?, does it make sense to stop all the medications just because hospice's budget doesn't cover them?, should we really drop the masks, the fresh flowers and the other possible threats of infection?, is my burgeoning cough a virus and will it cause Tad to die faster?
Then there are --mostly unpredictable-- moments of deep sorrow: for instance standing at Trader Joe's (yet again) with my beloved friend Julia and bursting into tears in the frozen food section while she gently hugged and rocked me. I had a hunch it would be a tough visit and thus asked her to hold my hand while I shopped.
Then later at home crying together when suddenly from nowhere one of us uttered tearfully: "I'm going to miss you so much."
Sometimes we feel sorrow mixed with resentment when one of us says out loud the thoughts of injustice we mostly manage to avoid: "Why? Why this? Why now? Why us?"
I must say the main source of strength for me is and often has been Tad's capacity to lovingly smile. He's always had a rather cantankerous side to him and when this illness first began I feared that side would dominate. He truly amazed me by sitting through hospitalization after hospitalization with an incredible elegance: polite words for each caregiver, a playful smile even in his pain, thoughtfulness and concern for the people attending his needs. I see today how much this smile carries me; how much it helps me get through.
During a sorrow moment yesterday he held me gently caressing my hair while I sobbed and asked whoever might hear me "How will I possibly find love so dear again?" He responded that the incredibly sweet love I get from him is simply him mirroring my love back to me. In his mind's eye somehow his love for me is nurtured by my love for him and vice-versa - like a juicy vicious circle, only not vicious.
(There's a famous couples psychologist who actually observed and quantified the amount of loving gestures a couple may exchange. He became very skilled at predicting divorce by observing when the ratio of "Love gestures" versus "contempt gestures" fell below 5:1. He observes that "masterful couples" generally maintain a ratio of 25 to 1.)
The deeper calmer part of me knows I will be fine when Tad is gone. I know that I will go through the sorrow, the rage, the letting go at my pace. I even know - from having seen many friends die tragically young - that Tad's love, his essence will be a continuous part of my inner world.
While bawling in his arms wondering aloud how I'd get by without him, he took my face in his warm hands, looked me deep in the eyes and with a big smile said, "Are you kidding me?! You have a whole world to help change!"
Perhaps we humans stay in loving couples because they help us aspire to be our highest selves. I for one am deeply grateful to have had five years and 100 days with the beautiful and loving Vern Raymond Thaddeus Crandall - who has taught me so much about love.
At the end of the day the hospice nurse came by to check on us. Tad asked her if there was someone at the hospice who could help us make plans for a memorial service. I've often imagined how after the cremation I would gather the many people who knew Tad and actually hear from them how his love changed their lives. Then it occurred to me - why wait til he is dead? "What if we do it before you die?" I asked. In his usual modesty he sort of hesitated but I could see he was also intrigued by the idea of being surrounded by love - by having his love mirrored back at him by dozens of folks.
We'll see if the seeds germinate.
In the meantime my deepest wish is that his love lives long in all of our hearts and minds, and particularly mine ;-)!
This morning's angelic/diabolical smile!
PS - If you've managed to get this far I encourage you to leave a little note of love on here. It always helps us to be reminded of how much love we have around us.
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