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.
Thursday, September 8, 2011
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.
Saturday, September 3, 2011
home
We are home now.
I woke up yesterday thinking it would be the worst day in my life. It was six AM so I called a dear friend in Quebec and cried for nearly 90 minutes: How will I find the strength to get through this day?? How does anyone find the strength to pick up their spouse at a hospital so that he can come home and die??
Once business hours came around I called the hospice organization and made sure that I would have plenty of support to get through this - assuring them this is not a situation with an elderly parent and plenty of siblings to share all the tasks. I told them he would have to die in the hospital if he and I couldn't be well supported by them - that I would need lots of people here to help.
They sort of reassured me. But more than anything Tad reassured me. He wanted to be home no matter what.
I must admit that my biggest fear - deep below the surface - was the simple idea of having him here getting sicker not healthier. How do you live with that? How do you maintain serenity in the middle of that?
I always thought during these many months of uncertainty -- wondering which treatment is best, which hospital or oncologist or even whether to treat -- that the pain would be less intense once the uncertainty was lifted. I was yearning for the serenity that comes from knowing either: 1 - he's going to get better or 2 - he's going to die.
Well now I have that certainty and it is no more comfortable. I still find myself wondering...just about different things.
Once we finally got home, got all the paper work and medication issues taken care of - we were able to just settle into watching back-to-back episodes of "True Blood". We actually declined the offers of support folks to come over. One friend dropped in and offered help. I found myself asking him if he would be willing to make us dinner (a wonderful Mexican dish another friend dropped off) and leaving us alone. He lovingly executed and went outdoors while we had dinner then came back through to collect the dirty dishes and wishes us good night.
* * * * * * * * * * * * * * * * * * *
It is 4 AM. I am lying in bed where Tad was just a few minutes ago.
He woke up to use the commode next to the bed and asked to go spend some time on the couch in the living room. For some reason the recent hospitalization created more pain, this time in his legs - hence he walks painfully and with a limp. But he was determined to get to the couch and sit up for a while. Within minutes he was back to sleep.
The hospice team seems to have finally found a level of pain meds that work to keep his pain at bay - a minor miracle in my book. My guess is that he has always needed a level that most doctors consider "dangerous" so they never actually had him fully out of pain. Now that the danger is no longer a danger - they can give him what he needs. He's a bit more chipper than usual but nothing radically different from his normal smiling self.
Tomorrow is another day.
I woke up yesterday thinking it would be the worst day in my life. It was six AM so I called a dear friend in Quebec and cried for nearly 90 minutes: How will I find the strength to get through this day?? How does anyone find the strength to pick up their spouse at a hospital so that he can come home and die??
Once business hours came around I called the hospice organization and made sure that I would have plenty of support to get through this - assuring them this is not a situation with an elderly parent and plenty of siblings to share all the tasks. I told them he would have to die in the hospital if he and I couldn't be well supported by them - that I would need lots of people here to help.
They sort of reassured me. But more than anything Tad reassured me. He wanted to be home no matter what.
I must admit that my biggest fear - deep below the surface - was the simple idea of having him here getting sicker not healthier. How do you live with that? How do you maintain serenity in the middle of that?
I always thought during these many months of uncertainty -- wondering which treatment is best, which hospital or oncologist or even whether to treat -- that the pain would be less intense once the uncertainty was lifted. I was yearning for the serenity that comes from knowing either: 1 - he's going to get better or 2 - he's going to die.
Well now I have that certainty and it is no more comfortable. I still find myself wondering...just about different things.
Once we finally got home, got all the paper work and medication issues taken care of - we were able to just settle into watching back-to-back episodes of "True Blood". We actually declined the offers of support folks to come over. One friend dropped in and offered help. I found myself asking him if he would be willing to make us dinner (a wonderful Mexican dish another friend dropped off) and leaving us alone. He lovingly executed and went outdoors while we had dinner then came back through to collect the dirty dishes and wishes us good night.
* * * * * * * * * * * * * * * * * * *
It is 4 AM. I am lying in bed where Tad was just a few minutes ago.
He woke up to use the commode next to the bed and asked to go spend some time on the couch in the living room. For some reason the recent hospitalization created more pain, this time in his legs - hence he walks painfully and with a limp. But he was determined to get to the couch and sit up for a while. Within minutes he was back to sleep.
The hospice team seems to have finally found a level of pain meds that work to keep his pain at bay - a minor miracle in my book. My guess is that he has always needed a level that most doctors consider "dangerous" so they never actually had him fully out of pain. Now that the danger is no longer a danger - they can give him what he needs. He's a bit more chipper than usual but nothing radically different from his normal smiling self.
Tomorrow is another day.
Wednesday, August 31, 2011
i don't know
Tad woke up yesterday morning incredibly ill. He could not manage to keep his balance nor stop shaking.
We made it to our appointment at the oncologist's office thanks to a neighbor who helped me get him into the car but I quickly realized he needed to be in the Emergency Room at the hospital across the street.
For the next three hours I watched painfully as Tad got more and more pale, weaker then unconscious - as they pumped him with all kinds of fluids to help him come back to awareness and start to breathe normally again.
As this was going on around me I was being approached by a myirad of people telling me bits and pieces but mostly asking so many different questions that I shifted into a near-altered state: completely calm with a steady, deliberate voice. Among the interactions were someone giving me the contact information for the crematorium, someone asking if we preferred he be transferred back to Stanford since it's protocol to treat at the most recent hospital and someone talking to me about banking issues and death certificates.
My biggest torment though was caused by the incredible pressure of being squeezed between my promise to Tad to resuscitate him if he should go into cardiac arrest and the insistence from the doctors -- again and again -- that resuscitating him is not a good idea. Doctors rarely have an opportune time to discuss this (rushing into an ER, transferring to an ICU, etc) -and they also don't like it when the answer is not convenient to them. Tad's request is that I have him brought back to life in case of an accident and then, if his quality of life is completely zapped, I agree to have him unplugged. Doctors don't like to do this with patients who are fragile and who may not have long to live anyway.
One of them said to me snarkily: "Do you know what it's like to be intubated forcefully? Have you ever been intubated emergently?" Another simply said: "I'll do it but I'm sure I'll break a rib or cause him severe damage."
Tad did not have an accident and five hours after our arrival he awoke in the ICU, looked into my eyes and said, "Why are you so calm?"
The truth is I don't know.
I don't know how we find the strength to get through each day.
I don't know how we can possibly feel like we've never been happier and how incongruent that is with the fact that Tad is going to die.
I don't know how Tad has found the strength to stay alive and how he has "defied every bell curve" according to the doctors.
I don't know how we can get back to that sense of happiness when we suddenly feel overwhelmed by the sheer sorrow of the fact that soon I will be here and he won't, the fact that illness is mostly random and unfair and has struck ruthlessly in the deepest, most intimate part of our lives.
I don't know how much time Tad has left to live.
I don't know what happens to a person's essence after the body dies.
I don't know if I'll be able to keep Tad's love alive inside me in a year, five years or ten years.
I don't know.
Today he was moved to a General Medicine floor away from the starkness of ICU. Being in a small local hospital is such a welcome change after the giant teaching hospitals. When the RN walks in and calls me "Hun" then slips me an extra meal my heart skips a beat. I am assured that I was not crazy in my pain at Stanford because they were indeed keeping the sweetness of life out of nearly all medical interactions. That absence caused me so much pain during our month there.
We have begun talking to hospice doctors and looking at what kind of in- home care can be set up; how we can make Tad's life as long as possible and as comfortable as possible from the comfort of his beautiful little house and garden.
Last night my dearest friend John and his partner came down to spend the night and keep me company. They slept on the new, navy blue, sofa-bed I bought Tad for his birthday. Astra slept with me, keeping Tad's place warm for him.
Until he can come back home.
We made it to our appointment at the oncologist's office thanks to a neighbor who helped me get him into the car but I quickly realized he needed to be in the Emergency Room at the hospital across the street.
For the next three hours I watched painfully as Tad got more and more pale, weaker then unconscious - as they pumped him with all kinds of fluids to help him come back to awareness and start to breathe normally again.
As this was going on around me I was being approached by a myirad of people telling me bits and pieces but mostly asking so many different questions that I shifted into a near-altered state: completely calm with a steady, deliberate voice. Among the interactions were someone giving me the contact information for the crematorium, someone asking if we preferred he be transferred back to Stanford since it's protocol to treat at the most recent hospital and someone talking to me about banking issues and death certificates.
My biggest torment though was caused by the incredible pressure of being squeezed between my promise to Tad to resuscitate him if he should go into cardiac arrest and the insistence from the doctors -- again and again -- that resuscitating him is not a good idea. Doctors rarely have an opportune time to discuss this (rushing into an ER, transferring to an ICU, etc) -and they also don't like it when the answer is not convenient to them. Tad's request is that I have him brought back to life in case of an accident and then, if his quality of life is completely zapped, I agree to have him unplugged. Doctors don't like to do this with patients who are fragile and who may not have long to live anyway.
One of them said to me snarkily: "Do you know what it's like to be intubated forcefully? Have you ever been intubated emergently?" Another simply said: "I'll do it but I'm sure I'll break a rib or cause him severe damage."
Tad did not have an accident and five hours after our arrival he awoke in the ICU, looked into my eyes and said, "Why are you so calm?"
The truth is I don't know.
I don't know how we find the strength to get through each day.
I don't know how we can possibly feel like we've never been happier and how incongruent that is with the fact that Tad is going to die.
I don't know how Tad has found the strength to stay alive and how he has "defied every bell curve" according to the doctors.
I don't know how we can get back to that sense of happiness when we suddenly feel overwhelmed by the sheer sorrow of the fact that soon I will be here and he won't, the fact that illness is mostly random and unfair and has struck ruthlessly in the deepest, most intimate part of our lives.
I don't know how much time Tad has left to live.
I don't know what happens to a person's essence after the body dies.
I don't know if I'll be able to keep Tad's love alive inside me in a year, five years or ten years.
I don't know.
Today he was moved to a General Medicine floor away from the starkness of ICU. Being in a small local hospital is such a welcome change after the giant teaching hospitals. When the RN walks in and calls me "Hun" then slips me an extra meal my heart skips a beat. I am assured that I was not crazy in my pain at Stanford because they were indeed keeping the sweetness of life out of nearly all medical interactions. That absence caused me so much pain during our month there.
We have begun talking to hospice doctors and looking at what kind of in- home care can be set up; how we can make Tad's life as long as possible and as comfortable as possible from the comfort of his beautiful little house and garden.
Last night my dearest friend John and his partner came down to spend the night and keep me company. They slept on the new, navy blue, sofa-bed I bought Tad for his birthday. Astra slept with me, keeping Tad's place warm for him.
Until he can come back home.
Sunday, August 28, 2011
the secret to life
I woke up very early Friday morning --two days ago-- thinking it would be the most painful day of my life.
Not only did I need to pack all of Tad's and my belongings, but I also needed to take my sweet, pain-riddled husband home to die. As I walked across the flawless Stanford lawns toward the hospital I found myself wondering where I would possibly find the energy to get myself through this tragic day.
But -- as my brain loves to forget -- life is rarely the way I think it will be.
The most difficult part of the day ended up being the waiting-game. Stanford took forever to do what they kept promising: finalize all of the discharge tasks. Planned for 2PM it actually happened at 7PM, a mere blink of an eye in Rigid-Institutional-Time but an eternity for someone with a death sentence eager to be home.
I discovered that the actual tasks of folding clothes, working with discharge staff, carrying food trays, fetching coffee were all quite soothing to me, pleasant even. However at one point I couldn't hold it anymore and my tears began to flow:
"I can't believe I am taking you home to die. This is too much for me. How did this happen?" I sat on the bed in a heap.
Tad looked at me with his gorgeous smile -- and a face of misunderstanding -- shaking his head and saying: "But that's not how I see it at all. I'm going home to live. Let's go live."
This waiting was nothing new. When the doctors first came by a few days earlier to deliver the bad news of the biopsy I was absent. Since the results were "complicated" they offered to come back at 1PM so I could be present. I was expecting the usual cancer-chemo, six-of-one, half-a-dozen of the other outcome but also knew it might not be good news. When I arrived at 1PM I notified the team and was told someone would be in shortly. That didn't happen. Each time I hit the call button the receptionist assured me that the oncologist was informed and would be there soon.
At 5:30 I went out to where I knew the doctors congregate and grabbed the first (no doubt unsuspecting) oncology team member, a tall, lanky Jewish-looking kid in his early 20's with expensive shoes beneath his white coat. I looked him in the furtive eyes and said: "I've been waiting four hours for the results of a life or death biopsy. I think it is highly unethical for you and your team to keep us waiting so long. Please do something about it now."
I must admit I was really grateful to see the Big Boss oncologist arrive five minutes later and equally grateful to hear his honesty -- something I had been seeking from big-shot doctors for months. I could see he and his lovely fellow were squirming as they told us that the leukemia was already active but the immune system just wasn't. They offered to treat again but told us it would probably be useless. The boss made some banal comments about living fully and enjoying the time left - only vaguely hiding his discomfort. When I told him I could see it wasn't easy for him he acquiesced and replied that he had this conversation "four or five times each week."
I asked him to describe to us what death from leukemia would look like. (It is in moments like these that I realize I am an optimist; I never really see disasters coming. Real frank black and white reality words -delivered with love- are what help me the most.) Much like my many friends who died of AIDS in the 80's and 90's he explained Tad may simply die of an infection that his leukemia-ridden body and the many anti-biotics can no longer overcome. Or because of the way the cancer weakens the circulatory system he may just have a brain hemorrhage and fall asleep - never to awaken. Unlike tumorous cancers however, the oncologist assured me, leukemia doesn't put pressure on your body in extremely painful ways.
He gave no indication of a time table.
Among our back-home tasks yesterday -including laying out pills, fixing the vacuum cleaner and unpacking-- was the simple gesture of filling the fridge with good stuff. I waited til dinner time when I know Trader Joe's is less busy and asked Tad what his wish-list was. He announced he was coming with me.
I suppose I shouldn't have been surprised. He had already jumped in his pick-up and gone to the hardware store for electrical tape to repair something. I began to get anxious when I saw that he wasn't coming back quickly enough. Images of the guys at the lumber company calling an ambulance to resuscitate him flashed through my mind. Then suddenly he came around the corner, the back of his red pick-up truck full of new plants and flowers he'd just bought at the adjacent garden center. Where he was getting the energy and feeling pain-free enough to do all this was a mystery to me. Just the day before he had been in a bed at Stanford Hospital buzzing again and again to get more pain relief.
At Trader Joe's we began filling up the cart with foods we rarely buy. It wasn't something we agreed on, everything just seemed appealing to us. Between UC being back in session and the surf season still active there were lots of young, half-dressed, cute things wandering around the store which, the usually mute Tad pointed out to me with relish. After I went through the frozen food section picking out our usual fare he insisted on going back to check. I went to the end of the aisle and watched him slowly walk along the giant freezer sinkholes carefully perusing each product with a smile. He came back with some kind of lemon/ginger-snap ice cream and fish sticks - things I would have never imagined buying for him.
Ironically Trader Joe's has played a key role in our couple. Just two blocks away from Tad's house - it's the little Ali-Baba cave I run to on a regular basis to make yummy meals for him - a devoutly non-culinary type. A big part of our love story has been me preparing meals and watching his pleasure as he eats them up. Compared to my life in France where this whole process took hours, these meals are usually short-lived and to the point - remnants of our Protestant heritage no doubt.
During the many months of hospitalization I began to realize how important these cooking and serving rituals had become for me. When he was gone I struggled to find pleasure in making meals. When he was here I found myself unearthing old techniques I had learned in cookery school back in Paris in my early 20's.
Suddenly while perusing the carbonated fruit-drink section my mind left the pleasure of the present moment and inched ahead to the future - the valley of the shadow of death. I burst into tears just as Tad came around the corner with yogurts and other goodies.
"Oh honey what's wrong?" he asked.
"I'm just thinking that sometime soon I'll be in this store shopping and you won't be here anymore."
He nodded silently, hugged me and wiped away my tears with deep love while two teenage girls walked by saying "Awwww..." with real empathy and a total absence of any teenage snarkiness.
Not to sound too dramatic - this moment was a mini-enlightenment.
There I was steeping in this blissful food-shopping adventure with the Man-I-Love who was finally free of hospital rules, gowns, gloves and vageuly sadistic RN's withholding pain medication. It was just a beautiful moment to be alive enjoying the purchases of each taste. Then suddenly I let my brain - clearly my best friend and my worst enemy - imagine something not real at that moment, something in the future. And I went from being completely content to being full of sorrow and fear. Then just as suddenly Tad flashed me his loving smile and I went back to joy. With his whole body he said, "I see you". Finally total strangers witnessed and acknowledged our suffering.
Those three minutes encapsulate some of the most powerful lessons of my life: the pain I cause myself by not living in the moment, the joy I feel even in the midst of huge tragedy, the deep soothing that comes from being acknowledged in my raw honesty by my beloveds and the healing power of being witnessed in our humanity by strangers - who suddenly become human.
After I calmed down Tad and I separated then moved to the check-out counter where the young cashier smiled and said, "You guys having a good day?"
We looked at each other and in unison replied "Not bad, thank you."
Not only did I need to pack all of Tad's and my belongings, but I also needed to take my sweet, pain-riddled husband home to die. As I walked across the flawless Stanford lawns toward the hospital I found myself wondering where I would possibly find the energy to get myself through this tragic day.
But -- as my brain loves to forget -- life is rarely the way I think it will be.
The most difficult part of the day ended up being the waiting-game. Stanford took forever to do what they kept promising: finalize all of the discharge tasks. Planned for 2PM it actually happened at 7PM, a mere blink of an eye in Rigid-Institutional-Time but an eternity for someone with a death sentence eager to be home.
I discovered that the actual tasks of folding clothes, working with discharge staff, carrying food trays, fetching coffee were all quite soothing to me, pleasant even. However at one point I couldn't hold it anymore and my tears began to flow:
"I can't believe I am taking you home to die. This is too much for me. How did this happen?" I sat on the bed in a heap.
Tad looked at me with his gorgeous smile -- and a face of misunderstanding -- shaking his head and saying: "But that's not how I see it at all. I'm going home to live. Let's go live."
This waiting was nothing new. When the doctors first came by a few days earlier to deliver the bad news of the biopsy I was absent. Since the results were "complicated" they offered to come back at 1PM so I could be present. I was expecting the usual cancer-chemo, six-of-one, half-a-dozen of the other outcome but also knew it might not be good news. When I arrived at 1PM I notified the team and was told someone would be in shortly. That didn't happen. Each time I hit the call button the receptionist assured me that the oncologist was informed and would be there soon.
At 5:30 I went out to where I knew the doctors congregate and grabbed the first (no doubt unsuspecting) oncology team member, a tall, lanky Jewish-looking kid in his early 20's with expensive shoes beneath his white coat. I looked him in the furtive eyes and said: "I've been waiting four hours for the results of a life or death biopsy. I think it is highly unethical for you and your team to keep us waiting so long. Please do something about it now."
I must admit I was really grateful to see the Big Boss oncologist arrive five minutes later and equally grateful to hear his honesty -- something I had been seeking from big-shot doctors for months. I could see he and his lovely fellow were squirming as they told us that the leukemia was already active but the immune system just wasn't. They offered to treat again but told us it would probably be useless. The boss made some banal comments about living fully and enjoying the time left - only vaguely hiding his discomfort. When I told him I could see it wasn't easy for him he acquiesced and replied that he had this conversation "four or five times each week."
I asked him to describe to us what death from leukemia would look like. (It is in moments like these that I realize I am an optimist; I never really see disasters coming. Real frank black and white reality words -delivered with love- are what help me the most.) Much like my many friends who died of AIDS in the 80's and 90's he explained Tad may simply die of an infection that his leukemia-ridden body and the many anti-biotics can no longer overcome. Or because of the way the cancer weakens the circulatory system he may just have a brain hemorrhage and fall asleep - never to awaken. Unlike tumorous cancers however, the oncologist assured me, leukemia doesn't put pressure on your body in extremely painful ways.
He gave no indication of a time table.
Among our back-home tasks yesterday -including laying out pills, fixing the vacuum cleaner and unpacking-- was the simple gesture of filling the fridge with good stuff. I waited til dinner time when I know Trader Joe's is less busy and asked Tad what his wish-list was. He announced he was coming with me.
I suppose I shouldn't have been surprised. He had already jumped in his pick-up and gone to the hardware store for electrical tape to repair something. I began to get anxious when I saw that he wasn't coming back quickly enough. Images of the guys at the lumber company calling an ambulance to resuscitate him flashed through my mind. Then suddenly he came around the corner, the back of his red pick-up truck full of new plants and flowers he'd just bought at the adjacent garden center. Where he was getting the energy and feeling pain-free enough to do all this was a mystery to me. Just the day before he had been in a bed at Stanford Hospital buzzing again and again to get more pain relief.
At Trader Joe's we began filling up the cart with foods we rarely buy. It wasn't something we agreed on, everything just seemed appealing to us. Between UC being back in session and the surf season still active there were lots of young, half-dressed, cute things wandering around the store which, the usually mute Tad pointed out to me with relish. After I went through the frozen food section picking out our usual fare he insisted on going back to check. I went to the end of the aisle and watched him slowly walk along the giant freezer sinkholes carefully perusing each product with a smile. He came back with some kind of lemon/ginger-snap ice cream and fish sticks - things I would have never imagined buying for him.
Ironically Trader Joe's has played a key role in our couple. Just two blocks away from Tad's house - it's the little Ali-Baba cave I run to on a regular basis to make yummy meals for him - a devoutly non-culinary type. A big part of our love story has been me preparing meals and watching his pleasure as he eats them up. Compared to my life in France where this whole process took hours, these meals are usually short-lived and to the point - remnants of our Protestant heritage no doubt.
During the many months of hospitalization I began to realize how important these cooking and serving rituals had become for me. When he was gone I struggled to find pleasure in making meals. When he was here I found myself unearthing old techniques I had learned in cookery school back in Paris in my early 20's.
Suddenly while perusing the carbonated fruit-drink section my mind left the pleasure of the present moment and inched ahead to the future - the valley of the shadow of death. I burst into tears just as Tad came around the corner with yogurts and other goodies.
"Oh honey what's wrong?" he asked.
"I'm just thinking that sometime soon I'll be in this store shopping and you won't be here anymore."
He nodded silently, hugged me and wiped away my tears with deep love while two teenage girls walked by saying "Awwww..." with real empathy and a total absence of any teenage snarkiness.
Not to sound too dramatic - this moment was a mini-enlightenment.
There I was steeping in this blissful food-shopping adventure with the Man-I-Love who was finally free of hospital rules, gowns, gloves and vageuly sadistic RN's withholding pain medication. It was just a beautiful moment to be alive enjoying the purchases of each taste. Then suddenly I let my brain - clearly my best friend and my worst enemy - imagine something not real at that moment, something in the future. And I went from being completely content to being full of sorrow and fear. Then just as suddenly Tad flashed me his loving smile and I went back to joy. With his whole body he said, "I see you". Finally total strangers witnessed and acknowledged our suffering.
Those three minutes encapsulate some of the most powerful lessons of my life: the pain I cause myself by not living in the moment, the joy I feel even in the midst of huge tragedy, the deep soothing that comes from being acknowledged in my raw honesty by my beloveds and the healing power of being witnessed in our humanity by strangers - who suddenly become human.
After I calmed down Tad and I separated then moved to the check-out counter where the young cashier smiled and said, "You guys having a good day?"
We looked at each other and in unison replied "Not bad, thank you."
Subscribe to:
Posts (Atom)