I live a quiet simple life, which is now colored by grief. My husband of 21 years ended his journey with ALS months ago. I have been journaling regularly since the day he died as a means of coping, understanding, moving forward. I am now ready to share the journey the best way I know how - through my words...
Sunday, December 30, 2012
All this stuff...
All this stuff...for one person? Pairing down seems impossible. I have sorted through some stuff - all the medical equipment and supplies are gone, and all of Mike's clothes (except for a few of my favorite shirts). I went through the linen closet - so much I didn't need anymore. Still so much remains.
Then there is his music, CDs, DVDs, blu-ray, audio DVDs, concerts, and documentaries, his headphones... It is mine now. It was always ours, but now that it is just me, it seems that these things were always his. I can't imagine keeping all this stuff, but I can't see getting rid of it either. And that is ok. I'll keep it until I don't. For now that will have to do.
Tuesday, December 25, 2012
Merry Christmas...
The holiday music station has been playing jazzy Christmas music - Etta James, Dave Brubeck, etc... And I can't help but think of Mike sitting in his spot enjoying the music.
It's been a different Christmas, but strangely the same. What changed, besides the obvious, was me and the way I chose to perceive the Christmas season. A time of nostalgia, gifts given, opportunities to help strangers, and dark nights punctuated with holiday lights everywhere I go.
Thursday, December 13, 2012
To tree or not to tree...
I used to love Christmas. Then, somewhere between Mike's distaste of an enforced holiday, depressed economic times, Mike's advanced level of disability, and a strict adherence of reciprocity, Christmas lost its joy.
There is one small part of Christmas that I had reclaimed a few years ago - decorating a small pre-lit, artificial tree with ornaments. I enjoyed going through the ornaments. Remembering when I got them, or made them. Each year it seems I added an ornament for some memory - The twins 1st Christmas, an ornament for each pet (newly added or recently departed), an ornament from a joyous child, or holiday excursion.
This is the first Christmas without Mike; but Christmas has been changing and evolving since I was a child. It occurs to me that it is all about perception. And although Mike isn't here physically I can hear him directing me to read one of his prints in the hallway.
Reality is not solid. The world is unique to each of us in the way we perceive, process,
and respond to it. You have a choice.
It is a small nod to the part of Mike that lives within me. This doesn't really feel like another "first" to add to my string of firsts or a new beginning, but a growing wiser. So, to answer my post's title - Yes, I will tree.
Sunday, December 9, 2012
The art of expression
Yesterday, I read a quote by C. Jung. I didn't write it down at the time because I knew I could find it again easily - but it has eluded me. The idea behind the quote was this - once you put your ideas/feelings/creations out "there" you have been heard/listened to/understood.
Exactly. I knew that is what I have been doing. This blog is not private with restrictive access, anyone who comes across it can read it. But at this point it seems too scary to have a public unveiling. Someday I hope to be ready - ready to share this emotional journey with everyone and anyone.
Friday, December 7, 2012
The holiday spirit...
I was told that the holiday season is a difficult time to get through after someone you loves dies. I don't feel like I miss Mike and more than I do already. There are no holiday traditions that we had. In all honesty what few holiday traditions we had faded away, not unlike Mike's muscles.
Christmas began to feel like a series of obligations. Get togethers with family and friends that we saw infrequently, was as much a shock for them as it was for us. A logistic exercise for a few brief moments of warmth, followed by the uncomfortable silences. Although Mike's disease progressed slow, it was a shock to those who hadn't seen him in a year. These occasions always reminded me how different our lives were from most everyone else - we were so different.
And as strange as it may sound - Mike was the outgoing one. So in grief I find an excuse to just sit. As hard as it is to acknowledge I rarely feel like I fit in. I dread the holidays without the comfort of Mike's presence.
As I type, I cry. I haven't cried for sometime, but I have felt the undercurrent of sadness for a week or so. I have been lingering over a flu of sorts. Maybe by not acknowledging my holiday blues I incurred an illness.
Tuesday, December 4, 2012
Joint checking...
The first was in the form of a holiday wreath. Each year we would receive a wreath from mikes brother and sister-in-law. This year the wreath came and I was all to aware that the wreath was sent to just me, and when I signed the thank you card it was cemented - it's just me. Nope, still not used to it.
If the first situation was "cemented" this next one was set in stone. I was told at some point the bank would require Mike's name removed from our joint checking account. The letter came and I was asked to submit a new signature card. There was no "card" to sign, just another condolence letter and several unclear forms with a postage paid envelope. I made a trip to the local branch to confirm what box I was to check and where I was to sign. I put the envelope in the mail and two days later "our" online bank profile was gone. I had created a separate one months ago in anticipation of this day, but it was still disconcerting to see it gone.
Mike's name is still on the checks and I am told that is ok. The thought of new checks with just my name, for the first time in 20 years seems too strange. I wonder if I can add Tehya's name? And who knows, maybe before I need new checks; checks will have gone the way of corded phones and VHS tapes.
Saturday, December 1, 2012
It has been a long time, and it hasn't...
I still miss him and I am beginning to think I always will.
The last few days I have began to feel an echo of panic. I do not know where it is coming from or why I feel it now. It is quiet in the house, the animals are curled up in their respective beds and I am anxious.
Maybe because I am now noticing how much time has past and that at some point I will have to "do" something. And that thought is paralyzing.
This busy season...
I haven't started any of it but I am exhausted.
Even though Mike won't be here - I don't feel any extra pressure or holiday depression. I am a little apathetic. There are few holiday activities I would like to participate in. Sitting here at home with the animals sounds like the perfect holiday season. Though, gifts would be nice. I do love a nicely wrapped gift - to give and receive.
While bustling around pre-holiday season I got overwhelmed. Overwhelmed and caught up in all the energy around me. I was visiting, shopping, and arranging my schedule like a puzzle - getting every piece to fit. It was impressive.
However, there was one thing I forgot to consider in the schedule. Me. I see that now. So my goal this week is to make several appointments for me.
Wednesday, November 28, 2012
November 19...
I have been feeling this sense of unease, a sort of disconnect.
I was going through and clearing out the photos on my iPhone and I came across some of Mike. I was startled to see a face void of expression. It occurs to me now that that is what everyone else saw. A shell of a person. There was so much more...
There was a short video, not of Mike, but in the background between the voices I thought I could hear Mike's ventilator. I listened several times straining to hear the familiar whooshing. I never thought I would miss that sound. Today I realize that behind that rhythmic breathing was my anchor. I could stop where ever I was and listen. It brought me back to a slow steady breathing pattern. It kept me anchored in this that time and that space. After a bad dream I could reach over and place a hand on his chest, slow my breathing, and match his rhythm.
So, i guess it is no surprise then that at times I feel lost and disconnected. The rhythm that structured my day for so many years is no longer.
Thanksgiving...
This year I decided to cook a turkey - for no good reason. Maybe to see if I could (I had never cooked a turkey before) or maybe to do something different.
The morning of Thanksgiving Facebook overflowed with people sharing what they were thankful for. That morning when I stepped outside with the animals to greet the day, a single flower caught my eye. Time seemed to slow as I stood there; and I could see so much more than a single flower, I was in the present moment.
"Accept the present moment and find the perfection that is deeper than any form and untouched by time." ~ Eckhart Tolle
Tuesday, November 27, 2012
November 16...
I have a small fantasy of someone taking care of me - it sounds so selfish. I just don't have it in me to try hard, to move forward. Sometimes it seems all I can manage is to keep up the house and care for the animals. And honestly, that isn't always the case - the dishes pile up and errands go un-run.
I nap, I sketch, I go for strolls - nothing too aerobic. I feel I should move more, eat less - my pants are tight. The weight that fell off me in my last few weeks with Mike is back with a vengeance.
I don't feel teary this week, just stuck in some stasis mode. There are things I should do, calls I should make. I do the basics and that has to be enough.
The animals and I take long naps - newton purrs and gazes into my eyes kneading the soft flesh of my neck and sometimes my face - ouch. Tehya keeps my feet warm and allows me the occasional hug. Einstein is soft and warm; grateful to sit in the crook of my left arm while we watch another Big Bang Theory re-run.
This is where I find comfort - in the familiar.
November 14...
There is so much stuff in this one room. I started my foray into art less than two years ago. I am surrounded by gel mediums, paints, adhesives, ephemera, text pages, old books, recycled treasures, colorful bits of paper, ribbon and beads...so much stuff.
I feel so tired. I am distracted by Newton - he would like to go out. It is these small distractions both externally and internally that seem to impede my progress.
Tuesday, November 13, 2012
Sorrow and Joy revisited...
I look at the leaves lying on the grass. It is sad they are no longer a green, pliable part of the tree. Or is it beautiful? The yellow-orange color of the leaves contrast against the green of the grass - like natures winter blanket.
As I watch the leaves drop, the branches of the tree are visible, strong and supportive. It is beginning its season of rest. From a human perspective that same tree could be seen as grieving the loss of its leaves.
It is cold and my normally warm-blooded body is finding it difficult to maintain its warm core. I feel sick - I think. Or am I depressed? Is this another form of grief? It seems so strange I can't identify it. Though, I know it's not important what it is.
I wait without expectation. And when I realize I am tense, I remember to breathe. That is my job today - to breathe.
Wednesday, November 7, 2012
One more first...
Mike liked the whole voting process. In a way it was his last job. Something he could do regardless of his level of disability. He would get a special audio format of all the state published election materials. And once he had reviewed that materials he would tell me what to mark on his sample ballot. Since our first year together, we had always read and discussed the propositions together. Our beliefs were similar, but we didn't always agree. It was still nice to debate the issues, working to see both sides without confrontation.
This year I received one election booklet and a single sample ballot. I was surprised how up to date the election committee was. It has been 4 months and 2 weeks since Mike's death and I still get Medicare mailings, billing notifications, an odd sales call, an invitation the the ALS ask the Experts conference, and other random things for Mike in the mail. However, the California State Election Board was on it - they knew Mike was gone.
Mike liked going to the polls to cast his vote. We would check in with the volunteer get our ballots. Then we would sit at a table and I would fill out Mike's ballot. Using his sample ballot as reference, I would quietly call out as I filled in each bubble - yes on prop x, no on prop y, etc... Mike's ballot went back into its folder and onto his lap while I completed mine. Then I'd drive his wheelchair to the ballot box - insert his ballot and put his "I voted" sticker on his sweater.
So, on this election day I realized not only would I be going without Mike, Mike was gone and would never vote again. I hoped I wouldn't cry while voting - though I did have moist eyes as I walked through the polling place door.
That night I sat and watched the election coverage as the results came in. I waited until the President gave his acceptance speech - my voting day was complete. One more first under my belt.
Wednesday, October 31, 2012
A Serendipitous encounter…
I let her talk, offering encouraging and affirming comments. The conversation flowed naturally and the points that were important for her and me came together. Her husband wanted to die at home. I knew what that was like. She had a minor physical ailment and didn't see the importance of taking care of herself. I had just read and discussed the concept of self-care and perceived selfishness in an Artist Way group.
I had two points to share.
- Taking care of your self isn't selfish. It is no different than putting on your own oxygen mask first, before putting on your child's mask. If you lose consciousness before getting the oxygen to your child – you will both perish. But if you put on your mask first, even as your child loses consciousness you have the strength to lift her head and place the mask on her face.
- Hospice isn't just for the patient. It is also for the rest of us. I imagined hospice would manage the pain, equipment, lab work, doctor's orders, etc. for the patient. It never occurred to me that hospice was there too, to provide support for the family. I thought having hospice in the house would add a whole new level of confusion, more people, and more noise. What I experienced was a gentle wave of care, quiet reminders, a soft caring hug, and genuine offers of assistance.
As for me, I kept hearing her tone of wonderment and disbelief in her words, "It's only been 4 months?" She had said the phrase a few times, maybe three. It was a reminder to me that 4 months is not that long when it comes to grief.
Saturday, October 27, 2012
Transformative Arts...
The class started by filling out a short personal survey, to be completed again afterwards to show changes in thoughts and feelings - if any. The eleven of us then gathered in a group and shared a brief personal introduction. Then we lay on the floor with our blankets/mats, closed our eyes and were led on a guided meditation to "see" the mask we were going to create. A short time later we were up and forming the shape of our masks with aluminum foil and masking tape.
I was energized. I met a tiger face to face on my meditation journey. He quickly took shape - bones of aluminum held together by ligaments and tendons of masking tape. Next came the paints - a rough estimate of color and design. He clearly needed some detail work - but overall I liked him.
We then spent a few minutes writing about our experience: what message our newly created animal mask might have for us, and what we as the creator might want from it. Then back to the circle to share our experience. This time there was a stronger sense of community, a shared vulnerability. The instructor shared a short poem of her newly created but unfinished bunny. Slowly, people began to share their creation and what it meant to them. As I listened I felt tears forming. I am no stranger to tears, but was unaware of why they would be coming now. I looked at my journal entry...what could I share, what could I say without breaking down completely?
I briefly shared the story of my tiger - he was my companion. When I saw him we were nose to nose, I was not afraid. I knew the two of us would sit together in the cool quiet of the jungle on the bough of a tree just watching the day pass.
A few more stories were shared. The tears had a life of their own. I started to look around for an exit. Would it be rude to jump up and leave the circle before everyone had a chance to share? Was it somehow important to stay for the symbolic closing of the circle? I think I made it - I got up and a friend was in front of me. She knew. She must have seen me from across the circle. She gave me a hug and I cried. No, I sobbed. Why? Just deep and utter sadness - I can recall the day and feel the remnants of that sadness.
"The core components of a Transformative Art experiences are hands-on activities or tasks that group participants execute, create, or do...This relaxed, non-judgmental space becomes a safe container for a journey into the sacred. It also opens a potent doorway for creating change and expanding the awareness of choice in how we live our everyday experience. It enhances self-awareness and this awareness creates an opportunity for the transformation of core beliefs about what is possible." ~ www.centerfortransformativeart.com
I later went looking for the definition of transformative arts. Oh...now I get it. Would I have gone knowing I would open "a potent doorway"? I have no idea, but I am glad I went. Grief, like the tiger is my current life companion. This brief foray into transformative arts was a reminder of that.
Sunday, October 21, 2012
Sharing Mike's last day...
In some cosmic serendipitous way, Mike's dad was coming for a visit the day after I re-lived Mike's last day. This was new territory for the both of us. There were no projects to complete. There would be no news and science programs to watch. No errands to run. No Mike to sit with in the morning sun on the back patio.
We shared our experience of Mike's last day. As I expected we both had different experiences. There were at least 20 people in the room that day. We all shared the same space and were wittiness to the same event - but that is where our journeys diverged.
I know, no matter what you said or did - if it was your truth at the time - it was the right thing. For a time, I was concerned about my last words to Mike. I played with doubts in my head - maybe I should have been more...
Now, I can honestly say that Mike was expecting nothing more than your truth, whether or not you could speak it aloud, it was enough.
Re-living Mike's final day...
It has been almost 4 months. I was recently asked to describe our hospice experience to a woman writing an article on caring science for an internal Kaiser newsletter. Sure, I thought, no problem...without realizing that I was going to have to re-live the day. Throughout Mike's illness we had helped others navigate the many issues that arise from newly diagnosed with ALS to living at home with a ventilator and everything in between. It occurs to me now that this final day was not about Mike - it was about the rest of us.
So as I recalled the day, as best I could, my voice cracked and the tears came. I apologized to the interviewer, assured her I was fine to recall the experience. Explained that the tears were part of the grief process in an attempt to comfort this poor woman who tripped right into my grief.
Toward the end of the interview I heard myself retelling a parts of the story, re-explaining in slightly different words but still the same story. Heard myself answer her final question with what I wanted to revisit not exactly answering her question. To her credit she thanked my for my response and asked the original question again. Looking back I see this clearly and know from reading several books on grief that people will often retell their grief story as a means of making sense of it.
When the call was completed, I cried. Cried for the pain of the day, the overwhelming sadness. There was no alternative outcome, no cure, no magical fantastical outcome - Mike was gone.
Thursday, October 11, 2012
Sorrow and Joy...
Yesterday I went to get my car washed. There was a homeless man sitting across the way holding a sign 'hungry - spare change'.
I sat waiting for the two men to finish vacuuming and cleaning the windows of my new car. It struck me what a luxury it was to sit and watch others perform this work for me. How extravagant I felt. I thought of the monks who live only on what charity they receive. But, in this country the homeless are treated like the untouchable class of India. I hadn't looked past the homeless man, but I didn't look right at him either when I drove into the parking lot.I gathered all the change I had in my purse - maybe $3, and headed across the lot.
I heard from someone that one of the worst parts of being homelss was to be looked over as if you didn't exist. I tell my self I will see him.
He is sitting in a wheelchair. I don't know whether he needs it medically or if it is just a place to sit. He is wearing old jeans and, bulky red tennis shoes. Next to him is a bottle of Gatorade - good to stay hydrated I think. His eyes are cast down and he has a slumped posture - maybe a physical defect. As I got closer and looked at him I could see the remnants of a what may have been black eye , a peeling area over his left eyebrow - I wonder if it could be cancerous - and would he even care. He doesn't really look up at me and maybe he can't.
I say a quiet "hi", not wanting to startle him. He responds with a soft "hey".
I looked around, there was no place to deposit my change. I showed him my fist full of coins and he put out an unsteady hand. I gently placed the money in his hand.
With out lifting his head, in the same soft voice he said, "that is very kind of you".
I said, "you're welcome", and walked away. There was nothing else to say.
As I walked away, my heart ached and I was overcome with a deep sadness. - "that was kind of you", I continue to hear that soft statement
I can't help but wonder if this breaking open to grief - is causing me to feel things more deeply. As I drive home I look up and see the clouds - they are beautiful and seem to be just as amazing every time I look up at them. Without this seemingly sad encounter would I have seen the beauty in the clouds?
...Your joy Is your sorrow unmasked . And the selfsame well from which your laughter rises was oftentimes filled with your tears...The deeper that sorrow carves into your being, the more joy you contain... ~ Kahil Gibran
Tuesday, October 9, 2012
An unexpected loss...
I started to cry, tears rolling down my face. I questioned the cat, "how could you do this?"- already knowing, killing this little creature was as natural to him as breathing.
I gently picked up the body. It was as light as holding a handful of cotton balls - to just throw it away seemed so wrong. So I sketched him as a memorial, then gently placed it in a plastic bag to dispose of.
I cried openly and it amazed me how openly and easily I could cry. For me it was an unexpected sadness - another loss.
Monday, October 8, 2012
Writers Block...
Then magically I am drawn to that half finished creative endeavor on the dining room table.
Today I am working on a wrist cuff we started in class. I pick up needle and thread and sew on buttons. I always feel like I am channeling my great grandma, Mary Conners. As I mangle stitches I wonder would she be horrified or love my creation?
My mind relaxes and the words flow. I realize that mindless handwork be it painting, stitching, doodling, or gardening is a respite from my stuck mind as well as my grief.
Ta Da...
P.S. I know she would love it.
Saturday, October 6, 2012
Finished already...?
Today and possibly for a few days I feel like I am done with grief. Done. Over it. Grieved out. Finished.
Maybe I feel a little angry - yep I feel angry, but I can't put my finger on it. I'm not angry with anyone or anything. Maybe I'm angry at grief. I feel weighted down like lead weights are attached to my ankles and wrists. What is this about?
Oh, I remember now.
The path of the labyrinth has surprised me again. I had reached close enough to the center that I must have felt almost done. Sanctified, pious, self-important - my ego shined boastful - look at us.
I admit I woke up with a faint feeling of loss. I looked over and saw a few of Mike's shirts sticking out of the closet - orange and blue stripes. Tears. I haven't felt teary for days, maybe even weeks - at least it has felt like weeks.
Finished? I guess not. On to a new leg of the journey.
Friday, October 5, 2012
Ready or Not...
An unpublished entry from long ago... i contemplate where i am now... it's time to write again...
A week after Mike died I wrote in my journal -
"..it's been a few days and time to emerge, I guess. Not sure I am ready, not sure I'd ever be.. I know it has only been a week but it feels like a month." ~July 3, 2012
During this time I couldn't think straight, small tasks seemed overwhelming. I got lots of invitations to visit people but I couldn't imagine going to Raleys alone let alone the airport.
"...when I go out I have to have a destination and don't make side trips. I feel unsure, not wanting anyone to see me or ask about Mike...a feeling of discomfort, ill at ease as if my grief is written on my forehead." ~ July 15, 2012
It was uncomfortably clear how unprepared I was to venture very far from when I, with my sister, went on an overnight trip to a cousins house in San Francisco. The night before I just stared at my bag. What should I bring? I had previously packed and planned for trips with such detail - medical equipment with back up machines, clothes, personal supplies, accessible accommodations and transportation, medical supplies, FAA documentation to fly with a ventilator, doctors notes, and the mental gymnastics of being prepared for any possible emergency.
But as I looked at this empty overnight bag I was overwhelmed. With my sisters help I was able to pack the handful of things I would need for an overnight stay, 45 minutes from my home.
"...overwhelmed and trying not to get wrapped up in 'what am I going to do?' " ~ July 25, 2012
"...I feel like a child at times not wanting to do something by myself - going places under the protective wings of my mother..." August 3, 2012
"...Yesterday I went out by myself, did a few errands, made a few side trips and I felt at ease..." ~ October 4 2012
Tuesday, October 2, 2012
Grief is a funny animal...
Grief is a funny animal that is now living with me and demands my time and attention. Its methods are varied, sometimes subtle other times in my face and all consuming. This is not unlike how my cats, Newton and Einstein, work at getting my attention.
Newton's incessant calling is loud and demanding. I am focused on what is before me, but am spending all my energy trying to ignore him. If I could just finish one more section; but he will not be put off. He paces, he cries, he jumps on the counter.
"I am busy, wait", I plead.
He moves to pester the dog. Her reaction creates a moment of chaos I find impossible to ignore - I jump up and deal with the result, but not Newton.
His protest continues until he decides he must get in my face. He climbs precariously close to my palette of wet paint. I pick him up and put him back on the floor, this does not dissuade him. He stretches his long body and puts his paws on my leg, looking to leap into my lap; I think there isn't enough room and he'll never be able to fit. And there he is in my lap, brushing on my newly painted art piece.
"Newton!", I half hiss and whine. I want to curse. He looks at me innocently - then he purrs.
Out of exhaustion I realize Newton's will is stronger than mine - I turn my attention to him. He purrs softly and chatters a bit. At 15 lbs he is heavy and I cannot hold him and continue to work - I have tried. I cannot predict how long he will perch on me, a few minutes, the length of half a sitcom, maybe just a brief check in.
Einstein's methods are dignified, simple, and effective. He sits at a distance and watches me. If I look up, he catches my eye and lifts his head gracefully as if posing for a photograph. When he does decide to interrupt me he is determined. it is at the end of a paw gently placed on the side of my face or a sharp claw to my thigh, back or arm. His delicate frame and 9lbs are surprisingly heavy. Once he has placed himself in front of me he will not be moved.
I have two choices. Get angry, get up and physically move him. Or stop what I am doing, look into those gentle eyes and acknowledge his presence. Once acknowledged he will lie quietly, softly in the curve of my arm.
These interactions with my furry companions remind me of my recent interactions with grief - push it aside, ignore its calls, it will persist, it demands to be recognized, acknowledged. It takes far less energy to acknowledge grief. When I fight or ignore its presence it is prickly and uncomfortable; but when I sit with it in stillness and quiet it is soft, maybe even comforting.
Grief is a funny animal that now lives with me. How long it will stay I can not say. It has its own time table.
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Newton and Einstein |
Sunday, September 30, 2012
This is Mike...
Mike and Mama Kitty 2001 |
Mike and Bert Monroy 2004 |
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Mike 2008 |
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Mike and Einstein 2010 |