Do not assume, listen.

Do not assume you know how I am feeling.

Some synonyms for the word assume are: guess, speculate, presume, estimate, suspect, conclude. I would personally add the word ‘judge’ to the list.

Listening is an art. I’ve known that for years and even though I have often failed it is still my desire to do it better.

I made a series of paintings called States of Listening.

This is an extract from what I wrote about them at the time:

‘In conversations between people the listening part is often done in a distracted way.  We the listener often do not really hear what is said, because in our head we might be preoccupied with planning what we are going to say, or even with what we are having for dinner.  External distractions can also occupy part of our attention.  The result is we might hear the other’s words, but not the deeper meaning and so experience the conversation as just so much white noise.  So listening is done at different rates and there are punctuated layers to listening.’

Since Alberto, my husband of 54 years died in January 2018 I’ve had many expressions of condolences and love, I’ve always believed that people are mostly fundamentally kind, and they have been.

I used to think that there was a cultural difficulty in expressing sorrow at a death and sympathy for the bereaved and maybe there is, however I think the difficulty is more than that. There is an impatience to listening. If we stop our own internal chatter long enough to listen to another person express how they are really feeling, it seems as if we might hear something we do not want to hear. Perhaps we are afraid that we are not up to helping with the sort of pain and sadness that is being described, perhaps we don’t want to be drawn in to their sadness. Sadness can be contagious and who really wants to be sad?

The response to the fear of being drawn in seems to be to quickly offer what is a shared experience, to tell your own story.

Think about it, if you fall down and scrape your knee, does someone telling you they did the same thing a week, a month, a year ago stop your knee from hurting? Does your knee stop hurting? Do you feel better at that moment knowing someone hurt their knee sometime in the past?  Or does that just compound the pain because now you have to show courage that you don’t feel and tell yourself, ‘now I know that, my knee isn’t hurting as much as it is’, or do you feel guilt that you weren’t there when they fell down, weren’t there to help pick them up?

To date the best condolences I’ve received are the simple expressions of love or straight forward telling of personal stories about Alberto. I’ve had people really, really listen. And I’m so grateful for that.

The worst are probably from those who only see from outside but assume they know what our lives were like.

Even without bereavement we all engage in this to some degree, I mean engage in assumptions. We see the externals of other people’s lives. Lives that may look the idyll or at least something we consider close to it, but there is an old adage for that; walk a mile in another’s shoes.

Some expressions of condolences have left me with my jaw dropped, or more colloquially, gob-smacked. It is hard to deal with those for I know that they are delivered with the best of intentions.

A youngish assistant Bank Manager started off OK with straight forward condolences but then went and ruined it by being as obsequious as only Rigsby (Leonard Rossiter) could be in the Comedy Rising Damp. I know it was done with the best of intentions, it felt like it came straight out of Bank Management training school and half-way through in my head I was saying ‘shut the f**k up!

Steam was let off with that particular episode as we left the bank in silence when son #2 who was accompanying me said ‘Why didn’t he just ‘shut the f**k’ up! I laughed because it totally echoed the words that had been in my head. That sequence will be added to family tales.

The other difficult one was from someone I had a slight acquaintance with. This lady knew Alberto had suffered with Alzheimer’s and knew I’d been his carer. I know she has had tough times and I know she most certainly wouldn’t have wanted to cause any kind of hurt or extra sadness. In fact she wasn’t so far off how I thought I would feel after the trauma of seeing Alberto deteriorate over the previous four years, but thinking you know how you will feel and feeling how you feel are two different things. Firstly, she mentioned sad times and offered condolences which was fine but then I was floored to hear her say ‘I expect you’ve finished grieving’. I replied, no I haven’t.

We cannot know what another is experiencing, we can guess, speculate, presume, estimate, suspect, conclude, assume, but we cannot know.

We can listen, really listen and if we cannot do that well enough, if we feel the need to insert our own story prematurely, then I like to remind myself of the Wittgenstein quote I used in my long ago University Thesis:  “Whereof one cannot speak, thereof one must be silent.”

(0020) States of Listening #1- Acrylic on canvas - 122 x 153 cm (49 x 60 inches approx) Linda Sgoluppi

States of Listening #1 – Acrylic on canvas – 122 x 153 cm – Linda Sgoluppi

states-of-listening-1-detail-a_620x3000

States of Listening #1 – Detail – Acrylic on canvas – 122 x 153 cm – Linda Sgoluppi

 

(22) States of Listening #3 -Acrylic on canvas - 122 x 153 cm (49 x 60 inches approx) Linda Sgoluppi

States of Listening #3 – Acrylic on canvas – 122 x 153 cm – Linda Sgoluppistates-of-listening-4-detail Linda Sgoluppi-a_620x3000

States of Listening #3 –  Detail – Acrylic on canvas – 122 x 153 cm – Linda Sgoluppi

Will-o’-the-wisp

Sometimes plans are dreams, and letting go of our plans, our dreams is painful. We have small plans and we have big ones.

Small ones might be just for the coming day, having coffee with a cherished friend, buying a new book, ticking something off a to-do list or just getting a few peaceful moments or being in the company of family.

Big plans are usually for the beyond-today-future’. A holiday, a special occasion, a home alteration, the list is endless. Sometimes those plans are solid, quite often some are not. We can have plans that are almost will-o’-the-wisp somethings, like a plan to make a plan, an ethereal idea we have in the back of our heads for some future time. Plans are our own inner head narrative, the story we map out for ourselves.

We need our plans, if we didn’t plan we would not function, we plan to get out of bed in the morning, or not, we plan to have breakfast, or not.

We invest so much in our personal plans, our personal dreams, we can feel triumph when they fit our narrative and we can feel great disappointment when they do not. There are external forces that have an impact on our plans, on our dreams.

Our plans often have some sort of nirvana element, as in when and if they are reached things will be as we want them to be. Look further than that though, and there is often an objective beyond our plan, so that if we reach that objective this or that will happen, we will be happy, we will have what we want. Sometimes that can happen, but often we aren’t that clear about what we want so the dream scoots further away.

Stuff happens, stuff that disappoints us, stuff that makes us feel we failed, stuff that breaks our hearts, stuff that does not fit our inner narrative.

It takes a lot to make new plans, new dreams, how do we let go of the old and start building new ones? What happens in the interstice, the time between the old and the time before the new? We seem to be in that empty space where even a rabbit in a headlight looks more comfortable that we feel. That is the toughest of times.

 

 

Until such time as my studio build can be finished my studio contents are in storage waiting for me to claim them.

Studio storage - Linda Sgoluppi

Crying on Cadar Idris

I’ve done some daft things in my life but this photo I took reminds me of what might have been the daftest and somewhat dangerous.

It is of Cader Idris in Snowdonia. I wanted to go to the top but never seemed to be with anyone that would go, and once tried but got the wrong place to start and ended up losing my specs and eventually gave up. So while staying alone in Wales I drove to the right base then set off up.

I know now there is an ‘easy’ route and a ‘harder’ route. Useful if you know about those but I didn’t so just took off. Turns out I didn’t take either of those routes and managed to find an almost impossible one but I was too far up the almost impossible before I got to a point of sitting down and crying. I was scared, going down can be a lot tougher than going up, and going up was getting more than difficult. I was in agony from a spinal problem and sitting on a tiny rock knowing that whatever I did, up or down, was beyond me.

I thought of the shame of being so stupid but even so I considered calling for mountain rescue help if my phone would work (old fashioned phone and also no guarantee of signal), I thought of the waste of resources for the rescue team, so I just sat there, exhausted. Then the little voice inside started to berate me telling me ‘you started so you finish blah blah blah’. I took painkillers with a drop of water and after a while I started up again.

Where I emerged through a crevice, two guys were on the path from the ‘easy’ path. They looked at me, then at each other then back at me and one said ‘F*****g hell you didn’t just come up that way??’ I said ‘yep I did’. Their reply ‘You must be mad!’ Yep, again.I didn’t let on what an ordeal it had been. I didn’t let on how relieved I was, or more to the point the sense of achievement I felt. Not in having actually done it, and alone, but in having overcome my fear and difficulties.

I went down the ‘easy’ way which as it happens should be easier now than then because the National Parks people were making the paths better, but in the process helicopters had dropped rocks at strategic points that blocked the path and left people to scramble over them!

I didn’t pass anyone on the way down and also ran out of water and was pretty thirsty by the time I got near the bottom. Then on the flat, managed to slip and fall on my rear end on some loose gravel and that brought me down to earth in a very physical way.

I know I shouldn’t have gone up alone, I know I should have checked the route blabby, blabby blah, but I didn’t and hindsight is a wonderful thing.

I know I will never go to the top of Cader Idris again (unless a helicopter takes me there, now that would be nice!).

However after the years of caring for my husband, Alberto, and now his death I have another mountain to climb so I’m reminding myself of Cader Idris.

How to say goodbye?

Nine days after my last post my husband died. This is an extract of the eulogy I wrote and read out at his funeral:

‘Alberto, how to say goodbye?

We have already been saying goodbye bit by bit over the last four years, every little goodbye as painful as the last.

In your last hours I held your hand, and sang an Italian lullaby to you, the one by Connie Francis. Our boys said that it could well have been my singing that probably made you decide enough was enough!

Always, humour has gotten us through the dark times. That humour has often been as dark as the dark times, this is a dark time so there is no reason to change that.

As an unknown blanket of death seeped around you I started to move my hand from holding yours so I could make you more comfortable but instead your hand took and held mine. I wasn’t sure exactly when you were gone but sat with you anyway in the quietness of before-the-day.

You knew I wrote about our journey into your illness on Social Media. We had agreed early on to share what that journey was like. You liked it when people posted messages and memories.

Sadly, you weren’t able to keep up, the disease was a greedy monster inexorably keeping you from seeing or knowing, but in the early hours of the morning after your death I posted this on facebook:

‘4 o’clock in the morning.
I am awake now at the time I would wake and come and check on you (again).
I am awake but you are not. I am hurting, you are not. 
I am glad you are released, I cannot be sorry about that, but I am sad, oh so sad.’

Our boys, those grandchildren old enough to understand; your sister and family would not want you hurting, but they are also sad, oh so sad.’

Another extract:

‘As a family we will continue to reminisce and as a memory; a moment; a snippet; catches us out we will continue to cry, laugh, and joke, but most of all we will continue to love him. (Even if he was sometimes a contrary old bugger!). Our hearts are broken but they will heal…… just a little. We will always love him and always keep him alive in our memories. This is how we say goodbye, you will leave a hole in our lives, we love you.’

——————————————————-

After having been Alberto’s carer for so long it all suddenly stopped with an abruptness that has left me feeling stunned. Dementia had taken much of him away already but he had been in my life for fifty seven years and now he is gone. I need to go forward with my life.

Until his illness, Alberto was always there to help hang an exhibition, he would help me find ways to do the difficult and at times the seemingly impossible. He was part of my art practice. He was proud of the art I made, he was proud of me.

Practically I need to find a way to get my partly constructed studio finished, then to find the art in me and in life.

Following Alberto’s death I’m finding it hard to follow the best bit of advice I’ve had.

That advice is just to breathe.

 

 

On Time, this the first day of 2018.

(008) Malin Acrylic On Canvas 76 x 76 cms Linda Sgoluppi

Time recognizes no artificial counting of its passing but humans have human constructs, one of which is our imposition of a counting system on that oh-so-indifferent time.

I had a respite week over Christmas when one of my sons took over role as carer for Hubs and I spent a week away with a supportive friend in a cosy Sussex converted farm building. Just to be clear, my husband has Alzheimer’s disease and I am his carer, I have written about how this new role has increasingly pushed my chosen path as a painter to the margins, in fact so much so now, as my husband moves towards the conclusion of his journey that my painting activity has come to a complete stand still.

There were pictures on the walls at the cottage. Pictures that did not move me one little bit. Pictures that set me to thinking about what people choose to put on their walls. We are so bombarded with images that the choice of what we put on the walls of our homes often becomes of secondary value.

I know that for a holiday rental cottage the choice of art is more of a wallpaper exercise, but it is an exercise repeated by so many households. Most want what they put on the wall to enhance in some way but often only consider the decoration aspect of what is there.

I went on to think about some of the ‘block-buster’ art exhibition that tend to be sell-outs in more ways than terms of ticket sales.

There is so much art collected in art galleries and museums around the world that so much of it isn’t seen, much is relegated to the storage vaults. Much of that art does not stand up to the passing of time. Time withers living things and is no less indifferent to art.

Some art is never intended to be more than of its time, a passing comment on a given era and is not to be dismissed for that, however the art that seems to endure speaks to more than purely a comment on an era. The art that endures, in whatever category of style it is caste, as has a quality that speaks to the soul.  My favorite definition of what quality, was best explored in the book: Zen and the Art of Motorcycle Maintenance

I have a deep connection to so many of my own paintings, I enjoy what they play back to me, especially now in my present circumstances and even long after I painted them. It is a life journey getting to know what I created and what they communicate to me in this painful time. I can only hang a few in my own home but those few nurture me in ways it is difficult to define. My husband is moving inexorably towards the end of his Journey, he has two of my paintings in his room but no longer sees them. He had favourites too and I hope that some of what he enjoyed about them stays in some small pocket of his sadly withered mind.

I hope that what you have chosen to put on your wall nurtures you too.

 

Image: Malin from the shipping Forecast Series. Acrylic On Canvas 76 x 76 cm

A Corker

I recently shared something that happened on my Facebook page, I am lucky to have so many on there that support me through the path of my husband’s Alzheimer’s Disease.
This is what I shared:

‘Until some in-process alterations are finished the only room that’s comfortable and dust free in in the house is hubs ground floor bedroom/sitting room So there we were and finally hubs is in bed and drifting off to sleep after being particularly difficult for most of the day.

Friend Lynne and I decide to open a bottle of bubbly to celebrate the extension Planning Appeal being allowed. Lynne fetched the bottle in for me to open as she’s not good at bubbly bottle opening. I remove the foil then carefully undo the wire and remove it. The cork refuses to move so I let go for a nano-second to re-position my hand on the bottle but in that nano-second the cork shoots off, hits the ceiling like a rocket then rebounds and hits a sleeping hubs on the head. We just couldn’t help the black humour and fell about laughing at the thought and just imagining trying to explain to a coroner that hubs departure from this mortal coil was because he’d been attacked by an errant Cremant de Loire cork while we were celebrating. I should add that hubs was absolutely fine and hardly woke up were both! #Blackhumour #Alzheimers #PlanningAppealAllowed #youcouldn’tmakeitup ‘

I’ve experienced Alzheimer’s disease before my husband was diagnosed, my Stepfather suffered with the disease but I now know that the manifestation of symptoms and behaviours are different in each sufferer even if there are commonalities. I’ve been stunned at the rapid deterioration in the disease in my husband this last year. By default I am his sole carer although I do have support from my sons. I often have people say that they don’t know how I do it, how I cope, well neither do I. There is nothing noble about it, needs must and I am it.

I haven’t painted in a while mainly because there have been delays with the construction of my new studio but more because of the very difficult phase of the Alzheimer’s disease. The physicality of doing everything for another human being is exhausting, when the brain breaks down it does not matter if legs can walk, bowls can open, eyes can see, feeding yourself, swallowing medications, or anything else if the brain isn’t working, nothing works.

I go to bed very early, exhausted, but wake early. It is only in those early hours that I have time to think. Oddly as my husband’s disease is reaching a stage where he is less mobile and more bed bound I have more of a chance to consider painting and as soon as the studio is finished I hope I can manage to work again.

Life is so often about change but many of us fall into the comfortable idea of being comfortable. Being comfortable is a luxury, if you have that luxury enjoy it because often it is transitory. Talking with a close artist friend the other day, we discussed the past things we thought we wanted for our careers, we’ve both had a degree of ‘success’ in those areas but all in all they are not the areas we judge our works worth by.

People that own and enjoy one or more of my paintings are where success is. If I feel a painting can leave the studio it is a ‘success’ because it got itself to the point where it has an independent life. If the painting didn’t work as a painting it would ‘fail’.

Like so often in history when times were turbulent and sometimes downright nasty we seem to be going through a period where the idea that in order for someone to succeed another has to fail. The mechanism of the ‘Art world’ seems to have failed. The art world sees art as just another commodity, maybe it was ever thus but I want to see less of the win/lose and a lot more of the win/ win, a lot more kindness, a lot more of the creativity that the human spirit is capable of.

I will paint again, there is life beyond Alzheimer’s, if not for the sufferer at least for those close to the sufferer. I want people to want my paintings, to enjoy them in their homes. One recent purchaser wrote to me saying that from three paintings taken to choose from, one painting had said ‘Hi honey, I’m home’. All the cold white galleries in the world couldn’t give me a warmer feeling than that.

I need creativity breathing into my heart.

If I had the energy to be embarrassed I might be embarrassed.

I might be embarrassed that for now I no longer seem to be writing about making art. I might be embarrassed that my blog states it is ‘about my art and other things’ when it has become about ‘other thing’s and not so much about ‘art’.

I might be embarrassed that the ‘other things’ have become almost exclusively about my husband’s journey, his descent into that tangled web of lost brain function, that dark and lonely place of dementia beyond reach of others. With his descent into that dark place my journey as his carer follows a parallel path.

I might be embarrassed that the studio I thought would be constructed and finished last Easter is still nowhere near finished but I’m not. There are reasons for that. I’m frustrated about the studio construction but that is a different story.

My husband’s name is Alberto, he is currently in hospital and has been there for over two weeks. Alberto was admitted to hospital with pneumonia. Although we are told the pneumonia is gone, he is still very unwell. With the pneumonia came a deterioration in dementia symptoms and he now inhabits a place I would never wish for him or anyone else to be.

In theory I am temporarily released from my immediate duties of carer, and while that is a partial respite, partial because I spend every afternoon with him at the hospital, it does in theory give me time in the morning when I might be able to think and make art.

It is not impossible to make art without a studio, I have managed to do so without one before, but it is much more difficult than having a space to walk into that welcomes you and breathes creativity into your heart.

I need creativity breathing into my heart right now because I feel that Alberto’s disease is sucking the life from both of us.

I could write reams about the experience of visiting Alberto in hospital. I am minded of the soul who is in the bed opposite to Alberto. This Soul gives a day-long running commentary about what is happening in his line of sight and it includes himself in the third person. The commentary is often amusing, always sad but is also an interesting insight to how we all have that running commentary in our heads. What we usually have with that commentary is the ability to censor wayward thoughts but for this Soul the censor is gone.

I say that the censor is gone but I do not know this Soul and it is possible he did not have the internal censor I am referring to in the first place, although to be fair, I suspect he did. It seems that in the current climate many seem to have lost their censor with the result that hate is spewed from their uncensored mouths. I am embarrassed that I am of the same species and can only hope we find a way for people to learn to be kinder, both to themselves and to others.

I will stop now, not because I could not write more but because I could.

A cat drinks from a puddle in my under construction studio.