Extraordinary Empathy of Grief

My heart is ripped open again.   Raw mThe loss of light - a sunset signifying the empathy of griefemories have returned that had just started to fade  – of those last days before Larry died and the days and weeks just after.  A family member lost her husband last week and I have come to know the extraordinary empathy of grief.

I don’t just think about her loss with sadness, I vibrate with the pain of it.   I literally feel her pain in my body, making me want to reach across the miles and join my broken heart with hers.   I want to take away their pain but all I can do is tell her to be gentle to herself, that there is so much chaos of emotion to come, so many ups and downs.  I want her to know that whatever she feel sis ok, and that if she feels the world has changed for her but not for anyone else, that it has changed for me as well.

I heard an unusual interview between Steven Colbert and Anderson Cooper in which they discussed their grief over the deaths of their parents.    Steven Colbert commented that all of life is a gift, including these painful deaths.  Anderson Cooper couldn’t seem to agree or to understand at first.  Colbert explained that if not for his own grief, he would not have understood Cooper’s grief in the same way.  He would not have been able to write the condolence letter that so touched Cooper.

I guess it is one of the gifts of being human that we can feel for one another.  It brings us closer even in our aloneness.  I know there are many other life experiences that I truly didn’t understand until I went through them myself – getting married, having a child change your life, empty nester syndrome, losing a parent as an adult, etc..  Is that the key difference between sympathy and empathy?  The experiential quality of understanding?

But even in the shared experience of losing a husband, our experiences are different.  My loss, coming home after the funeral with no family within a thousand miles, is different than her loss, surrounded by children and siblings.  My loss, after years of Larry’s illness and watching him lose his body slowly, is different that her loss after her husband’s very brief illness.   And different from another family member’s loss of her husband after a sudden accident.

So while I feel that extraordinary empathy of grief, I also feel incredibly alone in this renewed recollection of the days and weeks surrounding Larry’s death.  I wake in panic, a feeling almost like an electric current running through my body and a heaviness in my chest.  The hours of the day pass slowly, even though I am doing things, and when darkness falls, even the minutes seem long.

I worry about what next, and tell myself not to worry.  I work at staying in the day.  And then the worry returns.

I know that these awakened memories will start to fade again and some of the happier memories will take over.  And I will continue to make new happy memories. In the meantime I can only be gentle with myself.  And be grateful for the gift of being able to feel this empathy of grief, even as much as it is painful.


Five Months and Not Fitting

These things don't fit together
They don’t fit

It’s a little over five months since Larry died.  Just writing that makes me sigh.  I’ve been feeling different – it’s this intense sense of not fitting anywhere.  Anywhere!!!

I love my house but I feel like it just doesn’t fit.  I have good friends and neighbors but I feel like I just don’t fit into the activities we do.  I have visited my kids around the country and I sure don’t feel like I fit where they are.  I went back to Cape Cod where Larry and I lived four years ago and I don’t feel like I fit there either.

I don’t know what other words to use.  It’s an awkward, uncomfortable feeling.  It’s more than not belonging.  It’s more than being single in a world of couples. It’s more than not having the one person in the world you’re completely comfortable with.

It’s more visceral than that. It’s physical. Like my shape isn’t right for the space I’m in.  It makes me crazy – I want to do something to change it, to make the feeling go away.

Do what?  Sell the house?  Move?  Move where?  Get a job?  Doing what?  Everyone says don’t make a major decision for the first year, but what do they know about these feelings?

It was just this week that I started to explore the idea that this is just grief in another form.  Duh?  It doesn’t show up as before, crying, intensely missing Larry, being lonely.  I mean I feel those things, although perhaps less often during the course of a day.

I realize this grief is more about a sort of proprioception of identity.  Proprioception is the sense we have of where our bodies are in relation to our surroundings – what keeps us from running into walls and furniture.  It extends to things we ride and drive (which is amazing when you think about it) so we know pretty much where the edges of our car or our bicycle are.

My identity for many years came from a life tied fastly to other lives, one with many – parents, kids, and of course Larry.  In these last few years my life wasn’t a separate life running parallel and along with Larry’s anymore but rather so intimately bound in time and space and goals and outcomes that our two lives became one life.  My proprioception of myself was of that whole one life encompassing us both.

So the space I took up in relation to what was around me was of that entwined two lives.  And now I am only one half of that.  I don’t take up all that space.  So I don’t feel like I fit.  A horrible simplified analogy is a fitted sheet that you’ve ripped in half and are trying to fit on your bed.  Or to go the opposite way, driving a tractor trailer after you’ve been driving a Mini-Cooper.  It’s wrong-sized.  Life feels wrong-sized to me.  I’m like Gulliver on his four travels – not fitting in anywhere he went.

It helps to name it grief.  To see these new feelings as part of the process of letting go of the old life, of letting go of Larry, of starting to create a new life.

It isn’t absolute reality that I don’t fit.  It’s just a feeling.  My neighbor said “Nancy, you do fit.  You just feel like you don’t fit.”  Feelings come and go. I’ll just have to breathe and grieve and let time pass as I figure out where the edges of my identity are again, and where I am in relation to my surroundings.  Easy to write and hard to do!




Grieving in the Neutral Zone

Original Pastel Painting of Walking through Light and Dark or grieving in the neutral zone
Light and Dark at Discovery Park in Seattle

Years ago I discovered William Bridges’ work on transitions and used his three part model in work I did with organizational change.  I returned to it recently and found the three parts of “ending, neutral zone, and beginning”  to help me think about my grieving process, although not quite as linearly.  Grieving in the neutral zone is more of a pendulum swing process, from dark to light, from past toward unknown future.  Back and forth repeatedly.

Bridges wrote a more personal book called The Way of Transition; Embracing Life’s Most Difficult Moments.  He applied all his theories to his own grieving process after the death of his wife.

The ending is obvious in the case of a death, such as his wife, such as my husband, Larry.  What Bridges urges is to look not only at the loss of your spouse, your identity as caregiver (in my case), but also at what else you have to let go of.  I have to let go of the future we’d hoped for, as well as the suffering of the past few years.  I have to let go of yearning for things to be other than they are.

In the neutral zone, I have to endure the chaos of the unknown. I walk daily  in between the past life as I knew it which is now gone and the future life I will build still to come.   I live walking from darkness into light, and back through darkness, and back into light.

Bridges describes the neutral zone as exhausting, anxiety provoking, and full of vulnerability.  Oh, yeah!!!  On the other hand he offers some benefits if we can stay in the neutral zone and not move on too fast.

He describes the creative possibilities:  a time to challenge the status quo (what your life has always been) and being hospitable to new ideas (new directions your life could take).  He suggests thinking of it as a time of “active waiting.”

For me what also stands out is the word itself:  Neutral.  Neither good nor bad.

Feeling the intensity of grief  I felt the other day isn’t bad.  Feeling the glimmer of new possibilities isn’t good.  They are just feelings.  Temporary, at that.  Maybe if I sit quietly I can find the peace that sits under both, the presence in today.  In “active waiting.”

I went to a meditation class last night and felt that underlying peace momentarily.  Felt the existence of both grief and ease to be two parts of the same whole.  Two parts of grieving in the neutral zone.

I have this instinct that that pendulum swinging back and forth is important progress.  That movement from dark to light and back to dark and back to light is movement – it isn’t standing still.  And movement will give me new perspectives.




Darkness Descends Again

Original painting of darkness descending After a few days of feeling lighter than I had in a long time, darkness descends again.  Two days ago I woke sad, depressed, despairing of my life as I see it now.  I dreamed about Larry, waiting to go somewhere with him and him not ever getting ready.

Yesterday I cried for hours.  The weight of the past felt so heavy.  The weight of the present even heavier.

I cried for Larry and all the indignities he had to endure, for how hard it was for him these last four years  – with each day taking more and more from him.  I cried for myself and for all I had to endure, for the years of worry, and how hard it was to keep on trying to create a good life for us.

I felt critical of everything I’d done or not done, and angry at world, and at the healthcare system for making everything so hard for us.

What do I need today, I asked myself, to find some comfort?  I feel so…. so depleted.

I tried to think of what Larry would have said.  Immediately it came to me.  He would have told me to stop worrying about the past.  What happened had happened, and was meant to be.

I read a passage in the daily affirmation book Healing After Loss, by Martha Hickman.  She quoted Julian of Norwich:

“I was wholly at peace, at ease and at rest, so that there was nothing upon earth which could have afflicted me.   This lasted only for a time, and then I was changed… I felt there was no ease or comfort for me except faith, hope and love, and truly I felt very little of this.  And then presently God gave me again comfort and rest for my soul… And then again I felt the pain, and then afterwards the delight and the joy, now the one and now the other, again and again. ”

I was particularly struck by the aptness of this reading.  Also the serendipity that the quote was from Julian of Norwich, who a dear friend had been studying for several years.  My friend has just returned from a trip to the Church of St. Julian in England to visit the anchorage in Norwich where Julian wrote and lived.  As my friend sat there imagining Julian (and herself) being walled into the space, she felt the darkness of her own mortality.

How strange that these meaningful words  came to me from someone who lived from 1342-1416, and in whose abode my friend had just sat for hours.

I read recently that emotions are meant to be temporary solutions, and apparently centuries past, Julian knew that to be true.

Julian’s quote is followed by Hickman’s comment: ” Just when we think we have ourselves in hand and are going to be able to manage this, we are suddenly plunged into despair again. ”

Yes, darkness descends again today.  But I know, I hope, this too will pass.  It is all part of the process of healing.   I can’t rush it.  It will take its own time.  Damn it!

“He that lacks time to mourn, lacks time to mend.” – Shakespeare.


Traveling with Grief

One of the beaches I walked while traveling with griefI hated to leave on my trip because it felt like I was leaving Larry behind, but traveling turned out to be the best thing I could have done.  After three and a half weeks away visiting family and friends, I came back feeling lighter, more open to new possibilities.  Traveling with grief was not easy, but distance and new surroundings  created an opportunity for new perspectives.

It was a complicated trip and took weeks to plan, mostly because I was overwhelmed with indecision.  My grief-addled brain is still not fully functional for executive tasks.  I was going 5 different places but I started with booking just one flight.  Days later, I booked another.  And then another.

Figuring out how to fit my visit into other people’s busy lives, and into my kids’ homes evoked a sense of not belonging with anyone.  Once I was away that feeling was heightened.  I kept wanting to call home to report in, to share my daily experiences, but there was no one to call.  No one at home to check in with.    I even had several panic attacks of forgetting to do something, forgetting to take care of something (or someone.)

In spite of being with people all the time, I often felt lonely.  I was reminded of a movie of an astronaut taking a space walk and losing the tether, being left to tumble through space entirely alone.   I even had dreams about calling Larry to come home, and him telling me “I can’t come home.  I have things I have to do.” My brain was still working on accepting that he is really gone.

Though traveling with grief, there were wonderful times.  My grandson ran across the living room in the mornings with a big grin and wide open arms to hug me as he yelled “YaYa!”  There was taking him to the zoo, and a children’s museum.  Long walks by the Pacific, and putting my feet in Puget Sound.  Going to meetings with my daughter at UCSF and to my son’s lab at UW, meeting his girlfriend, sharing dinners with them.  Seeing my brother and his family, and taking my sister to lunch.  Spending time with Larry’s son and his wife and daughter.  I could see Larry alive in his son!

There were hard firsts that I expected, like our 23rd anniversary.  And other firsts that snuck up and sucker punched me, like July 4th fireworks. We’d always enjoyed watching them together!!

I stayed for a week in the town where Larry and I lived for 20+ years before moving to Florida 3 years ago.  On a gray day I walked by the house where we used to live, past another house in which my mother and stepfather lived.  Felt the sadness of all the losses.  Felt my own mortality.

I visited many friends we used to socialize with together.  Some visits were delightful, others were harder.  Some friends asked wonderful caring questions about how I was doing, and wrapped me in their arms when I cried.  Others avoided Larry’s death and my grief completely – which felt SO weird.

Many people asked “where are you going to live?”  “Will you stay in Florida?”  “Will you move back?” Will you go back to work?”

I didn’t have answers, and at first was angered by the questions, by their assumption I had answers so soon.  Perhaps I was angry with myself for not knowing.  But as I traveled, I began to realize that I couldn’t go back anywhere, I had to move forward.  I couldn’t fit myself into my old life, I had to find a new life.  I couldn’t live my kids lives, I had to make my own life.   I began to feel a little shiver of possibility.

I was worried about coming home to an empty house after so much time with people.  But I walked in and felt the comfort of my home and the memories of Larry wrap around me.  I felt so much lighter!    As if a shift had happened through the process of being away for so long.

We’ll see how long this feeling lasts.  I know enough now to expect that both the bad feelings and the good feelings are temporary.  Yesterday, I woke with a momentary thought of wondering when Larry would be getting home.  Today I miss him terribly!!!

Even though I’m home, I’m still traveling with grief.


Experiencing Both Grief and Resilience

Original pastel by the author of light through the clouds, the feeling of resilience and grief.
“Light Through the Clouds”

It’s been twelve weeks since Larry died and the heart-smashing black abyss of grief that I first felt is beginning to morph into a more gentle shadow that comes without warning, then fades away.   Most days I spend at least a little time writing and reading about loss, about caregiver recovery.  I cry less and I’m doing more, finding little joys and comforts that bring relief.   I believe I am experiencing both grief and resilience.

I recently read about both in the book  The Other Side of Sadness  by George Bonanno who has conducted years of research with bereaved people.  He says the well-known Kubler-Ross theory of five stages of grief (denial, anger, bargaining, depression, acceptance) was based on observations of people with cancer who were coming to terms with their own mortality, not on rigorous study of people experiencing loss of a loved one.  And Freud’s theory of needing to “work through grief” or it will overshadow your whole life was just that – a theory.

Bonanno’s research says that 60% of people recover pretty rapidly (within six months) from their initial grief and what facilitates that recovery is resilience.  I was intrigued reading his comment that emotions are meant to be temporary solutions.

As I understand him, people who are resilient tend to be able to accept and embrace that there is an ongoing oscillation between grief and joy.  Each are temporary.  They are able to feel both and they are able to manage both.  They can cry, and they can also laugh. They can express their grief, and when necessary, they can suppress their grief (at work, for example).

They also feel, even in the dark depths of grief, that eventually they will recover.  They will experience both grief and resilience. They have an optimistic view of themselves.

Is that me?  As Larry lay dying and then in the hours that followed his death, his son and I were able to laugh in between when we cried.  Those swings were wild ups and downs, crazy oscillations of emotion that followed into the next days and weeks.

Now I’m finding that there are still oscillations, but smaller ones.  Good days and bad days.  Good nights and bad nights.  Good hours and rough hours.  Overall though, both peace and sadness.  There is light between the dark clouds.

I look back to our last months together, when Larry was experiencing so many symptoms and we still found ways to enjoy life.  We were able to hold both polarities – dying and living a good quality of life.  I’m figuring out how to do that for myself.

That doesn’t mean I don’t miss him.  I do.  I miss him terribly.  A few days ago would have been our 23rd anniversary.

But Bonanno talks about separating the grief from the memories, and even from sadness.  I feel more sadness and less intense grief.  What’s the difference?   Grief feels more like yearning to me- wanting him back, hating that he’s gone, wishing things were otherwise.  Sadness is sitting with the loss.  Accepting I have a big fat hole in my life but I still have to move on.

On the other hand, my love and memories will always be there.  In fact they feel more tangible and available and comforting now than right after he died, when they were too painful to think about.

Maybe I’ll fall apart tomorrow, but according to Bonanno I have a 60% chance of not falling apart for very long.  As for the future, if I feel like I’m coming apart after six months or so I will seek counseling, because that’s when the research indicates initial grief starts to turn into chronic grief and I’ll need help.

In the meantime, I’ll accept that things can feel both surprisingly normal, and then pretty darn hard.  That I can feel happy, and very sad.  That I am experiencing both grief and resilience.



Waves of Grief from Ordinary Moments

Original pastel of one set of footsteps in the sand
My pastel of my lonely beach walk

Today is Father’s Day and next Saturday would have been our twenty-third anniversary.   Going through these sad “firsts” is so hard.  I’ve purposely planned to travel on our anniversary to lessen the loneliness.  I expect those first special days to be hard.  What I don’t expect are the waves of grief from ordinary moments.

I bought a car this week to replace his wheelchair van.  After agonizing over which make and model, how old and how much to pay, I drove out of the dealer lot.  Instead of feeling excited, or relieved, I felt miserable.  As I turned toward home, it hit me like a ton of bricks that this was the first car he wouldn’t see, wouldn’t sit in.   When I drove into the garage, there was no one to show it to, no one to celebrate with.  I just closed the garage door, walked in the house and was overwhelmed by a painful yearning for him, a horrible wave of loneliness that felt like it was sweeping me under.

I’d been doing ok.  Getting out with friends, finding a gentle routine that involved exercise, art, and meditation, journaling and lots of walking.  Laughing sometimes, crying here and there – small swings up and down.

Then the last few weeks, I’ve felt these frequent waves coming at me of grief, and sometimes panic.  Think of playing in gentle waves at the beach and all of a sudden having a rogue wave smash you down and drag you out from shore.    If you expect big waves, you plant your feet, you brace yourself.  But when you don’t know it’s coming… when you’re not ready….

It’s been hard to catch my breath.  Two nights ago, I was looking for something in the liquor cabinet and came across some Vanilla Crown Royal he’d asked me to buy for him.  The next night I happened to open the medicine cabinet in the guest bath and found his electric toothbrush. AHHHH!  And sometimes the tears come without any prompting at all.

In a book called The Other Side of Sadness on new research about grief, I read that these oscillations are normal for about the first three to six months and then, for about 60% of bereaved people, they start to abate.  They come and go less frequently and with less strength.

Knowing it’s normal doesn’t make it any easier, though.

Life almost seems harder now than a month ago.  Maybe I’m expecting more from myself.  At first, I gave myself a pass on just about anything hard.  Now I tell myself to just get on with it.

But I also think the waves of grief hurt more now because a certain new normality has started to creep back into my life.  That new gentle rhythm I talked about.  The waves of grief stand out more starkly in comparison to a few hours of “normal.”

Plus, the permanence of losing Larry is starting to sink in.  I took a walk on the beach early this morning and saw several older couples walking along holding hands.  That won’t be us.  He won’t come walking in the door, all whole again.  He won’t ever hold my hand or drink that Crown Royal or use that toothbrush or sit in my car.

They hurt, these waves of grief from ordinary moments!!!  The yearning for something that will never be.  I know I’ll get through this, but damn, I feel so very very lonely.




Eighteen Caregiving Skills I Can Use on Me!

Original pastel of finding clarity of using my skills on meIt occurred to me this morning that I have all these well-developed caregiving skills.   I had previously identified specific parts of caregiver recovery but I didn’t have any clear picture of how to recover.  Now I’m wondering if

Pastel beginning - finding out how to go forward
This is how I started the pastel above – form but no detail.

part of the process is being intentional about using these skills on me?  I’m alone.  I need care in this difficult time, just like Larry needed care in his difficult time.  So I came up with a list of competencies I developed while caring for Larry.  This gave me more detail to create a better picture of caregiver recovery.  I can use my caregiving skills on me!

  1. Be patient with slowness and disability:   Allow myself plenty of time to do nothing and just move slowly through the day.
  2. Pay close attention to health:  Catch up on doctor appointments, eat healthy, get exercise (I’ve joined a hula hoop class)
  3. Accept help that’s offered and also ask for help:  I asked a neighbor to drive me to the airport because I just didn’t feel like going it alone with Uber.
  4. Notice and mitigate symptoms:  one symptom I’m working on is my tense jaw, neck, and shoulders.  I’m trying to  just notice how often my teeth are clenched – seems like every time I think to pay attention. Plus I had a massage this week.
  5. Find fun activities that are manageable:  I can’t handle big gatherings yet but I go to dinner with a neighbor when invited, take beach walks, ride my bike for a few minutes, and practice my hula to music.
  6. Search for ways to find comfort:  I read happy novels, use nice coffee mugs, notice nature , hug the dog, take long hot showers, get massages or pedicures to feel the comfort of touch, and wear comfortable clothes that make me feel good.
  7. Use trial and error:  when something doesn’t work I try something else.
  8. Right-size expectations: I’m leaving a lot of things undone, especially things I don’t like to do.
  9. Know I can’t multi-task right now.
  10. Be strong or gentle with myself as necessary.  Know that both are possible.
  11. Accept that crankiness and fatigue is part of the journey but don’t allow myself to get stuck in it.
  12. Choose who I spend time with according to whose energy feels good to be with.  Larry and I never chose to spend time with people who offered pity rather than empathy.
  13. Remember that whatever is today will be different tomorrow.
  14. Heighten my awareness of my needs and wants:  I was great at this with Larry and it takes enormous work to do this for myself.
  15. Attend to spiritual needs:  prayer, meditation, ritual. Last week I tried a singing bowl meditation and this week went to hear a Buddhist monk.
  16. Try to stay upbeat and generally optimistic.
  17. Keep a sense of humor:  Alexa, tell me a joke!
  18. Find ways to stay in the ongoing stream of life: Keep living, whether I feel like getting out of bed or not.   Don’t let myself get isolated or focused only on my grief.

I’m going to print this list out and read it on a regular basis.  I have great confidence that these are skills and behaviors that I am good at, with which I have a lot of experience.  Now I can use my caregiving skills on me, and hopefully be as good at it as I was for Larry!




Caregiver Recovery versus Bereavement

Dark sunset painting of the weight of caregiver recoveryI’ve been musing on the process that is caregiver recovery versus bereavement.  Somehow it seemed important to me to separate the two even though there is much overlap.

Take meals for example.  My whole pattern has been disrupted.  Larry’s death means taking out just one set of silverware, one placemat.  I don’t like to eat at the table anymore so where do I eat?  Should I bother to use the dishwasher?

The caregiver recovery part is remembering that I can prepare and eat foods of any texture.  I internalized choosing foods that he could eat so I have a hard time remembering I can eat anything, like rice, for example.  Just like I couldn’t remember it was ok to leave the house at first because I was so used to not wanting to leave him alone.

The biggest change for me is getting used to calm.    No crises, no drama, no emergencies, no adrenalin. I know I don’t have to be on high alert constantly, but my body is anyway.  My shoulders are constantly knotted, hunched, prepared for the next blow.  My belly is still tight, my breathing shallow.  I wake in a sweat, wondering what’s happened I need to deal with.  I carry a nagging dark shadow of worry that I’m not taking care of things.  I have the rushing symptoms of panic attacks at the oddest times.  Some maybe not so odd – like in a doctor’s waiting room for a recent physical.  PTCD – Post Traumatic Caregiver Disorder!

My relationship to time has changed.  Nothing’s urgent.  No problem needs solving ASAP.  If nothing’s urgent, why bother?  Measurements of time have changed, too.  The days and hours used to tick off to the metronome of CNA and nurse visits, breathing treatments and  pill schedules.  Now they ooze out with no structure.

There’s my relationship to the future.  When you live with a progressive degenerative disease, you have to stay in the present.  The present is the best you’ve got!  You can’t plan for the future because the future is completely unknown, in length and in possibilities, filled with things to dread.  Now I’d like to think the present isn’t the best I’ve got.  But my dread of the future is another dark shadow of habit.  And I’ve forgotten how to plan.

I am no longer needed.  No one needs me!  I have no purpose!  My days stretch out with emptiness.  Loneliness, too – but that’s part of the grieving.  Filling the emptiness is part of caregiver recovery versus bereavement. After all, I was abruptly fired from my job.  Sure there were parts of the job I didn’t like, but I really liked my boss – or my co-worker, depending.  In my case, I gave up my consulting practice two years ago for this caregiver job.  Now I have neither job.

The sounds of the house are different, particularly at night.  Yes, I have had to get used to sleeping alone.  But sleeping with quiet is part of caregiver recovery versus bereavement.  There’s no oxygen machine, rhythmically pumping, sort of like a heartbeat.  There’s no CPAP machine, with it’s own rhythm.  The sounds of the day are different too.  I don’t watch much TV, and especially this season, Larry always had sports on, because it was something he could do that he enjoyed doing.  Especially his beloved Red Sox games.  I can’t listen to noises of the game (but that’s because of grief).

Finally, it’s making decisions without the benchmark of the disease.  What house, what climate will work for Larry?  What can Larry do at this stage?  Where can Larry go with his lack of balance, his walker, his wheelchair?   What car is best for this stage of the disease?  I am now parameter-less.  Yes I have unknown freedom. Yes, I have more choice.  But I have no experience of living this way.  I’ve put my own wants and needs aside for so long I’ve forgotten how to have them, never mind how to act on them.

So now that I’ve made this list of what I’m experiencing that’s part of caregiver recovery versus bereavement, what do I do with it?  How do I actually go about recovering?

PS – What runs underneath everything is the need to recover from the residual physical, mental and emotional exhaustion.   Sleepless nights, hospital visits, choking episodes healthcare system failures.  But worst of all, day after day after day, watching your loved one suffer the progress of the disease – the indignities, the ugliness, the messiness, the incapacity.  Death by 1000 little cuts, as they say, for both of us.






Dreams, Weights, and Measures of Grief

Original pastel of Larry walking away on a beachThis morning, I woke early from a dream thinking Larry’s warm back was pressing against mine.  I’ve dreamed that we’ve been trying to get into places together and had the wrong keys, and that we were going out together and my clothes didn’t fit.  These dreams are heavy weights as I wake up and measure my grief.

Clearly my sleeping brain is trying to make sense of his death, which my awake brain can’t really do.  This morning’s dream was particularly weighty as it was such a visceral reminder of all I’ve lost, damn it!

Some mornings I don’t want to get up and face the day.   Other mornings, I have to get up and get away as fast as possible from the bed and my thoughts.  This morning was one of the latter.  I went to the beach after walking the dog.

I’ve graduated from the MSA Caregivers discussion group online to the MSA Widow/er group.   Lucky me.  It’s hard to read about grief stretching out seemingly endlessly in front of me.  Six weeks for me. A measure of time that I guess is meaningless.   It’s been 1 year, 2 years, 4 years, even 6 years for others still dealing with grief.  I asked what people have done that helped.  I got good answers:

    • establish a new routine
    • journal
    • exercise
    • meditate
    • grief counseling or groups
    • get a dog
    • prepare for holidays, anniversaries, etc.

Ok, I’m doing all that and it hasn’t made me feel better.  Takes time, you say?  I’m just tired of having life be hard.  I’ve had years of hard.  I don’t want to do hard anymore.  Can’t you just wave a magic wand and make the next 6-12 months go by?

But as I write that, I don’t really want it to happen.  There’s something about the grief that for now keeps me connected with Larry in an intimate way.  Something about it that honors him, honors our love for each other.  Something I have to do.  Not that I want to get stuck in it.  NO! NO!  NO!

I try to keep reminding myself of what in me will serve me well.  Measures and indicators of future success surviving grief.

I have learned how to live with polarities – we figured out how to live well and enjoy life while Larry was dying.  So, too, will I be able to figure out how to feel both grief and joy.

I’ve reinvented myself before, through many career directions changes, as a single mom after my divorce, as a caregiver relocated to a new state without family nearby.  I have skills to re-reinvent myself now.

I’m generally a happy person and, through Larry, have learned to accept whatever comes and make the best of it.

I have lots of interests that I haven’t had a lot of time for.  I’ve been painting and trying pastels for the first time.  I’ve enjoyed that.  I got new middle distance glasses so I could read my piano music.  They arrived yesterday and I sat down to play.  That didn’t work so well as I was weighed down with thinking of how much Larry enjoyed hearing me play over the years, thinking of him sitting in the room with me just listening.  I played 2 pieces and then couldn’t stop the tears, which turned into an ocean of grief.  But just as I learned how to sleep in our bedroom again, I will learn how to play without him.  Maybe not today, but sometime.  When I’m ready.

I have lots of good memories, and no regrets about the past, just regrets we don’t get to enjoy a future together.  I can’t help but feel lucky for the almost 23 years of marriage we did have, for our love story together.

So my brain will continue to dream as it works through this. I will measure the days, weeks, and months since 9:02 PM April 2, 2019. I will feel the weight of losing him in my life.  These dreams, weights, and measures will not stop me from feeling joy again, moments of it now, hopefully growing more frequent in the future.