The occasional wallowing, or how I wish I could chat with Sophia Loren

19 10 2018

Approved-Sophia-Loren-Armando-Gallo-Photographer-I have a lot of friends who are dealing with chronic illness or the illness of loved ones or bereavement or even the loss of pets. So when I saw this article, it called to me: “The Other Side of Grief” by Whitney Akers. The article links to a group of stories about how people coped with their grief, from goat yoga on… One of the points made truly resonated with me:IMG_8129

“Even years later…a sense of deep loss comes in cycles, is hidden in the nooks of your house for you to unexpectedly stumble upon, and becomes a part of you forever…”

So true that. I fell across a sketchbook of my dad’s the other day (he’s been gone 32 years now, for context), and I had to stop and catch my breath, the feeling of loss was so acute. Every time I see an apricot poodle, I am overcome with memories of Pickles the wonder dog, my best friend through many years of my marriage. I talk to someone about a work issue and I can’t help my mind from skipping back to things I wished I’d done differently at work. I feel again the loss and embarrassment I felt when I was forced by my MS to leave employment.

People with chronic illnesses deal with incremental grief, too – every new challenge needs to be adapted to, self-image redefined. Inside we try to stay the same as we were (or better still, learn from our experiences), but our outer selves change and toss us aboutfunny-picture-dump-the-day-53-pics-funny-funny-misshapen-body a bit.

Sophia Loren says: “If you haven’t cried, your eyes cannot be beautiful.” I agree. It’s like parenting or running a marathon. Unless you’ve experienced significant loss, you really don’t understand. And the type of loss isn’t what is important. It’s what it does to you. You can grieve the loss of a pet as heavily as of a person. (I urge you to avoid grieving for plants or fish though as they die frequently and you’d just be a mess.)

I’m not saying it’s okay or good for anyone to grieve constantly. I think that just lays you waste. But in my experience, it’s good to be prepared for those little bits of grief that leap out at you from the corners. It’s extra special good if you can appreciate the feeling and then use it to enrich your world, by helping others or creating art or even just smiling at strangers who look like they might be having a terrible day.

Sophia Loren also says:
“I’ve never tried to block out the memories of the past, even though some are painful. I don’t understand people who hide from their past. Everything you live through helps to make you the person you are now.”
Mind you, perhaps sharing ALL of your past might be unwise (shameful details might lead to the wrong impression…;-) ) (ahem)


Of course, Sophia also said:

e4e93e94-73ea-4980-b49f-e124be457e98“Everything you see I owe to Spaghetti.” and “Spaghetti can be eaten most successfully if you inhale it like a vacuum cleaner.”

See why I love this woman?

So, while I’m not inhaling spaghetti (though now I am dreaming of it), I’ve decided to take the lumps the world has given me and sculpt them into something else. I know it helps.




Wriggling the little grey cells

15 12 2016

depression-im-fineSome of you fearless readers might be aware that I have been fighting depression for quite a long time – say, roughly ten years or so. I figure it was the first symptom of my Multiple Sclerosis.

Truth be told, it, and the cognitive changes, are the scariest changes with MS. I truly hate depression. I’ve seen what it can do. I’ve been there while it destroyed a lovely girl. I’ve found it sitting around my apartment longer than I can say, like the hoary black dog described by so many. It’s just there. Breathing. Despite me trying to bat it away.

It frustrates me because I am a logical person. And logically, I have no reason to be depressed. My MS is manageable for the time being, I have enough money to live relatively well, I have a cat who adores me, some fantastic friends and family members who check on me and keep me sane, two out of three children who appear to care about me, and the potential for a career as an artist. My problems are very first world and I feel bad for feeling bad. Darn Catholic guilt.

So why does it appear that sometimes, breathing air is, for me, a waste? Why do I occasionally envision jumping in front of a bus, driving into a wall, or seeking out fentanyl? It is totally bizarre and frustrating and I hate when I come over all blue and I try to pull myself up by my bootstraps and all that but you know, sometimes I can’t.

Last Mother’s Day, I was so close to the brick wall impact that it terrified me. I called in march-3every single one of my helpers. God love them, they were there, and took me seriously. There is nothing like getting support to sustain you in a crisis – and all of my professional helpers were right on the money. Friends somewhat less so, but I didn’t tell them much, and everyone has their own load. I know how hard it is to respond to someone with deep mental health problems. It’s awkward. The words you might use for other illnesses don’t fit well.

“Get well soon!” seems insulting for some reason, and the suggestions of “You just need rest,” and all of that pop in the air and leave an door of superiority.

Because, of course, I KNOW what to do. Eat properly. Get some air and exercise. Laugh, play your ukulele, dance. Read a book that sucks you in and makes life seem worthwhile.

But see, when you are depressed, you know all of that but you can’t summon up the energy to do it. You avoid the cheerful. You hide the joys of your life. You can’t concentrate on a book.

I’m fortunate that I still cling to the “be a good parent” mantra – I can’t do anything like suicide to my kids. It would hurt them and for a long long long time. Often that’s the only thread that keeps me going.

So I’m playing with my brain again, trying a new combination of medications that should help me through the anticipated winter blues. It of course terrifies me to take brain altering drugs. Who knows what it may do to the rest of me! But I can’t risk the deep downs again.

I personally hope the drugs will make me even more charming and delightful….and slim and elegant…

My mother was so afraid of mental illness she wouldn’t let it be discussed in the house. She banned counselling and refused to deal with any issues. My mother’s family were dynamite people, but they had their little ways, God rest their souls. Denial ran rampant.

So she kept us away from my father’s family, where there was a history of mental illness, and by Jove I’m still mad about that one because that group are to a person delightful and I’ve missed out on sharing my life with them until just recently.

(XOXO to all lovely cousins, on both sides, by the way. You’ve enriched my life in so many ways.)

I cope well 98% of the time, though my output is less than optimum (book still unwritten, dishes unwashed, etc), but even so, I know that dog is nearby. I’m hoping this new medication will help put him in the closet where I can’t see him anymore. And for those who read this and wonder, I am OK, today. If you don’t see me for awhile, I might not be. Drop me a text? I’ll do the same for you. Life is grim in the Trump era.

And why write about this, in a public place?

There’s still a stigma about mental illness as I’m sure you know, and heck, if all I can do is bleat about it to highlight its existence and the fact that a fairly competent person like myself can also be suffering from depression so deep it frightens me, I’ll do it.



Well, F*** it all, anyway.

29 03 2016

img_1503-1I’m in a mood. I get in a mood whenever my MS takes a little bit more of me away.

When I’m IN that mood, the following things make me furious:

Statements like, on the website: “MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them.” HA!

Statements like: “My XXX has had MS for years and she still walks five miles a day. Healthy living, you know.” GRR!

Statements like: “Oh, you don’t have spasms like XXX has. His are really bad.” OH REALLY???

Or anything that either suggests I can’t possibly do something, or, alternatively, that of course I can do something. Or people telling me I have it good, or people feeling sorry for me.

It’s an angry, crotchety place, my current locale, surrounded by thorns. Can’t move in any direction without being offended or put out or frustrated or angry. I’ve been in it for a few months now and I don’t like myself in this spot. I much prefer to be the cheerful, “Well, tomorrow is another day” kind of gal. The one who copes well all the time, the one who LIVES her life instead of dragging from one day to the other.

The one who doesn’t feel like ripping the throat out of anyone who says anything about MS or life or feeling or anything. Mine or their own.

My excellent counsellor tells me I am grieving. That I need to allow mys11855132-largeelf to grieve to let things go. Well, I don’t know how to grieve. I’ve never learned. I can fake it, yes I can, I can look moodily out into the middle distance, etc, etc, but grieve? Nope. Not in my makeup, not anymore. Too much has gone by ungrieved I have a bloody ice jam in there and the surroundings will likely be flooded if I chip away at things. So it just piles up in huge lumpy blocks of coldness…

So much hurt, so much loss, so many things I’ve tucked away into their own personal hurt lockers and slammed the door. Everything from when I gave out Valentine’s Cards in grade eight and the boys who received them put them on the floor and stomped on them, to when my brother called to tell me my dad had died and I was just pulling the turkey out of the oven for a dinner with friends and I sat there and made polite conversation like I didn’t care. From being a married mother of three to being a divorced mother of distant children. From living with the loss of my job and identity through MS through constant struggles to find meaning in the new life I deal with every day.

But then I give my head a shake. First world problems, I tell myself. You have enough money to have a comfy home, good food, can go out and have fun occasionally, you have friends who put up with you and the occasional more-than-friend who holds you close. Your cat loves you. So what if every action requires days of recovery? No one is bombing you or starving you (alas) or hurting you. You have nothing to complain about.

And truly, I don’t. I am grateful for so much, it seems churlish to complain.

So I’ll just try this grieving thing and hope I can undo the ice jam, just a bit. Time to think about my blessings. Time to do some “aggressive self-care”, as my lovely cousin puts it. Beware of flooding. And maybe take a page out of Roald Dahl’s theory of life and try to think happy again. If only to look lovely…





Losing my boss

10 02 2016

a294e7bd9e71d075a5318146d38e792aOne of the little things that we folks with MS have to deal with often is the residue of the minimal (or more) brain damage caused by the lesions and inflammation of the disease.

For me, it’s all about my boss-brain. Executive functions, they call them. I used to have them, once upon a time. Apparently it’s fairly common to have problems with them as MS progresses.

My poor friends and family have to put up with my whip fast mind-changing – I toss ideas through the air, get all excited about them, change my mind, and race off in the other direction. I seem incapable of choosing a route and following through, and the poor folks who listen to me are probably hurt and confused as I waver to and fro.

God love them, so far they have simply commented. I recently nearly lost a good friend this way, and it drew me up short. How to cope with my Anne of Green Gables-ish enthusiasms, which seem to take no one else into account? I must appear completely selfish as I toss myself here and there – thinking of moving here one day, changing my mind the next, planning a trip or an outing another time, rejecting it totally the next.

I’m working on being less reactive, but I do suspect most of it has to do with the holes in my brain. (Which I can never say without channelling my ex, who used to quote the following:

There Are Holes In The Sky, by Spike Milligan

There are holes in the sky
Where the rain gets in
But they’re ever so small
That’s why the rain is thin.)

My holes in my head aren’t so thin anymore. Things flash about in there and the boss brain is out to lunch or off playing a round of golf or perhaps shagging the secretary (cos God KNOWS I don’t have anyone writing down my decisions or ideas!).patrick-star-sparks-o

I always liked the thought of a creative wander everywhere mind, but that’s when my boss was still about to rope it in when I needed to organize my thoughts or accomplish things or make decisions or think about what I want to say. Now it’s a bit too free-range for me. I really don’t want to spend the rest of my life alone, shouting WTF!!!, but I’m afraid now. If I get close to someone, how will the brain act? Will I end up hurting people all over again?

And given that MS is a chronic, progressive disease, wouldn’t it be better if I just hid myself away, said nothing, kept to myself, walls fully up, just so the laser beams sparking out of my damaged cortex won’t fry anyone?

It’s a conundrum. For the moment, trying yoga and meditation, CBT and DBT, self-regulation and prayer. And lots and lots of apologizing to those caught in my brainstorms.

Of course, on the bright side, maybe I’ll lose the ability to speak/type/communicate…but where’s the fun in that?



Dear mum

25 01 2016

Well, Margaret Warner, actually. Unsinkable, certainly.

I’m thinking of you today. I’m not sure why this bright winter day brings you to mind, but maybe it’s a confluence of two things I’ve read. The first was “Dear Fatty”, by Dawn French – her memoir, written as a series of letters to people she knows and loves. We never shared Dawn – she came on the scene here a little bit after you left. I know you’d have loved her, her crazy humour – that is, if you could get past her being so round and the occasional shocking bit.  I can hear your voice saying something like, “She’d be so pretty if she weren’t so heavy,” much as you said to me on more than one occasion that I needed to lose weight but, I “could still move well.” And I had “such lovely skin.” I think you’d have loved her parish council in The Vicar of Dibley, given your work with the church and probably a very similar council.

I don’t think you’d have liked French and Saunders – I think something about their drinking and fooling around would have left you profoundly uncomfortable, as you seemed to be with Monty Python. Do you remember when Life of Brian came out and there was all this fuss about the sacrilege? You came down on the “not to be seen” side, as I recall, but I saw it anyways and it remains one of my favourite movies.

Thank you for being that someone I could test myself against, push my ideas against, form myself against. We didn’t think alike in most ways, and now that I am about your age when you discovered your cancer, I realize that I missed getting to really know you. We spent so much time butting heads, politely, always politely, but I missed getting to know the fun you you shared with my cousins and your friends.

You had mothering goals with me and I suppose I am the same with my kids, trying to be accepting and encouraging and laugh endlessly with them but always having that motherhood light attached, blinking concern at the wrong moment, putting my foot wrong. I used to think I was such a good mom. Funny how that changes as you grow older, how you see the gaps where you could have done better, where you missed that bit, where that little bit of mothering knitting dropped a stitch, purled when it should have knitted. I wonder if you ever felt that.

You always seemed supremely confident. But maybe you, like me, sang “Whistle a Happy Tune” as you stepped into new situations, faking confidence, you with such élan. I wish I knew. Maybe if I thought you’d had doubts I would have felt closer to you, as I fought my way to adulthood. As it is, I felt all weakness was an embarrassment to you. God knows how you would have taken my bouts of depression. Mental illness, to you, was a sign of weakness. And scary as hell. Because of this we barely saw my father’s family with their admitted mental health problems – though to tell the truth I often thought your family could have done with a little counselling now and again.

But maybe, maybe, it was so scary to you because you knew it, fought against it, dreaded the contagion that comes when a depressed person gets pulled into another depressed person’s circle. I know that feeling. I hide, too.

The other thing that brings you to mind is a short story, “The Woman who Sold Communion” by Kate Braverman (McSweeney’s early fall, 2004). In this, a woman is denied tenure and falls apart, heads down to meet up with her mother, a woman she ran away from, a woman who lives like a hippie out in the desert. She goes there because she knows she is safe there, even though she and her mum don’t seem to have much in common.

Once, when my marriage was falling apart, in the early days when I was expecting my youngest, I called you. I had had enough, I said. I couldn’t bear being with such an angry man. Your response was: “Come home.” I was shocked. You were, above all, a staunch Catholic. Leaving a marriage was a big thing.

I sometimes wish I had trusted you and perhaps taken that step. Instead I thought you were looking for company, and resisted. But the fact that you said what you did to me made it safe for me to continue on, to stick it out for another 15 years, some good, some bad. Because you gave me permission not to, and a safe place to go.

Miss you.

On anger, depression, Robin Williams, Terry Pratchett, and writing

25 09 2014

I read an article yesterday by Neil Gaiman about Terry Pratchett, author of the fantastic, funny, wise, and seriously wonderful Discworld series. Neil was asked about Terry, about how he must be such fun.

Neil told a story of Terry, about how he’d been furious one time and about how he’d told Neil that it was the fury that drove him to write. He was furious about his Alzheimer’s. I felt a surge of recognition.

Though I try to out a good face on it of acceptance and “enjoy each day”, I am completely furious that multiple sclerosis has robbed me of my life. Scrape the surface of my cheer and you’re likely to see tears or rage. I spent years, years, educating my mind. I was moving rapidly forward on my career, heading for a position where I could have significant impact on things. I wanted that, I tasted that, I respected people with a mission. And then MS came and struck my brain. Cognitive assessments tell me I should concentrate on things requiring no more than 20 minutes concentration.
This is very true for complicated tasks, and , alas, my writing. So I’m trying to shift my focus to less verbal/executive/numerical things, to more generalized creativity, but I feel the loss. I feel it every day I get up and am baffled by simple tasks. It breaks my heart, every day.

And so I rage. And like many, I turn that rage inwards, towards depression. Part of the depression is because of the MS brain damage – perhaps the depression associated with Parkinson’s damage was the final push for Robin Williams, poor and wonderful man. Part is because, like Terry and Robin, I share the telescope-turned-backwards view of a progressive, disabling disease that will not just kill me, but will make me a crippled, incompetent, incontinent, dependent thing first.

It’s all about generativity. About the ability to contribute in some meaningful way. For Terry and Robin, perhaps the thought of no longer being able to be brilliant is/was too much. I’m not burdened by assumptions of brilliance – I’m nowhere near these guys on the scale. They bring (still) joy to millions, I might do the same for a few, and I’m content with that, most of the time.

Other times I grieve what I might have been.

And then I give my head a shake and vow to make every minute count while I can still manage those twenty minutes. So I pick up my pen, my creative projects, my advocacy, my friendships, my joy, and surge onwards…

Because it’s the rage that fuels me, too.<<a

Creativity and madness

27 07 2014

I’ve struggled with depression for years. It started with my multiple sclerosis and was the first symptom spotted. Coincidentally, I restarted writing.

My family always tells me I’m the creative one, the one who thinks oddly, out of the box (though I would argue my older brother is also gifted in this area – and my kids are wildly so). I know that, during my brief career in management, I was often on a completely different page than many. This led to feelings of failure and isolation and utter hopelessness…

So, now, I’m having a bad bout with the MS – blurred vision, muscle spasms, pain, confusion, the whole package. And depression. And I feel at these times, any challenge is beyond me, AND, at the same time, my life is meaningless if I don’t do something important. It’s a tough place to be stuck. So I decide to quit everything I am doing and try new things in a flurry of trying to succeed at anything, anywhere.

51TTMH+FdgLAlong comes Maria Popova’s excellent Brain Pickings today: Creativity and Mental illness. Sometimes, at my most paranoid, I think she secretly knows me, her postings are so appropriate for the day…

And suddenly I don’t feel so alone. There are many others here in the murk (with occasional northern lights and lightning) here with me.

Now all I have to do is decide. Do I quit the writing game? Or do I listen to my chafing neurons and continue?

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