I look at you and see a helpless smile;
my pain is yours, we share each piercing wound
that bleeds and weeps and shocks us from denial.
The fear is real and shouts but without sound,
it s volume rising till we can’t be heard.
We feel a shaking of the earth beneath
and while most days we will not be deterred,
emotions are awash with silent grief.
But each day sees us here and still we breathe;
our gratitude for life together soars.
Your painful smile diminishes and we’ve
come through another day with hope for more.
And though life’s tough and sometimes we will rage
We sing our song together from one page
The Same Song (Sonnet)
12 Sep 2015 39 Comments
in Poetry Tags: denial, determination, disability, gratitude, grief, hardship, hope, illness, pain, Progressive multiple sclerosis, struggle, togetherness
Crying Over Spilt Tea
30 Jul 2015 52 Comments
in Poetry Tags: a ceptance, carer, disability, fear, loss, MS, sadness, spilt tea
This morning I spilt a full cup of tea
over the bed;
my hand simply gave way.
It happens.
Everything soaked through
including myself, and
you, the stoical carer
already overloaded with
extra chores, and a time schedule
that used to belong to me,
rose calmly to the challenge,
stripped the bed,
placed stained linen carefully to soak
and went out the door
to collect our grandson
for the day.
From the corner of my eye
I could see it – disability
sitting on the sidelines
gloating, large as life
with a smugness I could have slapped.
Sometimes I feel like a child.
But unlike a child,
I watched your face as you
cleared the mess;
the pursed lips, unassailable truth
in the extra crease on a forehead,
that said
this wasn’t on today’s list.
We said nothing;
silence grew louder
until we both heard it –
the sadness, sobbing softly
for our loss.
Sonnet
16 May 2015 59 Comments
in Poetry Tags: acceptance, despair, disability, hope, longing, multiple sclerosis, sadness
I long for what I can no longer be,
strong limbs that move and never question how.
I long for who I can no longer see,
the one who disappeared and left me now
to tread life’s path a very different way;
a stranger in a world that I once knew
where land and sky just seem to fall away
and raging, rolling seas, my soul imbrue.
Until a shaft of light somewhere appears
and lulls the tempest to soft whispered waves
that ripple on the shore, allaying fears
restoring peace and hope my spirit craves.
The sun, the moon, the earth now realigned,
and I am who I thought I’d left behind.
We Dit It Jack!
05 Jul 2014 56 Comments
in Poetry Tags: courage, disability, dog walking, fear, joy, MS, walking through fear
I don’t usually post two poems so close together but the day after my last poem “Dog Fears”, Jack and I went out together for a walk, just the two of us, for the first time in three years. It has taken that period of time since diagnosis to accept I need a mobility scooter and then a further period towards having the courage to use it on my own. I feel the two poems are very much connected. After all, “Dog Fears” was about not only Jack’s fears, but my own too.
We Did It Jack!
Just me and you,
we bit the bullet and barged straight through
that cloud of fear that leaves us fraught
sometimes for good reason, others for naught.
I could hardly believe it, my spirits were high,
emotions soaring became part of the sky,
bumped into birds all busy in flight
but they trilled and shrilled in utter delight
at this precious success, or was it just me
wrapped tight in a flight of fantasy.
You stood so well my lovely boy,
kept looking up at me, saw my joy
which then became yours as you walked with pride
heads high, the two of us side by side.
I knew we could do it Jack, just you and me,
together out walking how it used to be.
I just needed a little courage that’s all
and when I saw you there standing so tall
I’ve never let go of fear so fast;
we did it Jack, we did it at last!
A Bad Good Dream
26 May 2014 61 Comments
in Poetry Tags: bad good dream, disability, dream, forest of night, moon path, multiple sclerosis, sadness, tsunami of sadness
A Bad Good Dream
Eyes half open
you realize it’s morning
and although a dream-soaked
forest of night,
star-scattered moon path,
insisted everything was well
and as before –
so excited you found you could run,
right arm normal again
pointing full stretch toward a Snowy Owl –
daylight now smirks a different truth.
You slide from the bed
good side first,
drag a broken body to the bathroom.
The mirror witnesses it all;
tsunami in a single tear of sadness.
This is just how it goes sometimes. Writing and sharing dilutes these emotions, restores gratitude, and maybe others going through the same feelings may at least realise they are not alone.
Disability
11 Dec 2013 57 Comments
in Poetry Tags: disability, grief, longing, MS, sadness
She doesn’t wear it well,
it doesn’t suit, not her style;
some things just make you look old.
But she hadn’t read the small print –
no refund available,
exchange maybe, if unworn.
There’s plenty she would change;
freedom to walk her dog for a start,
spontaneous trips out by herself,
baking those delicate pastry things.
It’s too late now,
she’s worn it for too long,
but she still doesn’t wear it well.
The Tree, Heraclitus and Me
13 Nov 2013 56 Comments
in Poetry Tags: acceptance, Challenges, change, contentment, disability, equanimity, Heraclitus, multiple sclerosis, paths, peace, roads, spiritual growth, tree
From where I sit at home my gaze falls every day upon the same tree in the garden. It has been a focal point for thoughts, reflections, doubts and fears, my coffee companion and a calm source of inspiration for the beginnings of many poems, which leads me to wonder where I would be without all that surrounds me in my particular corner of the natural world, its beauty and how it speaks to me. The tree appears like an old sage, calm, stoical and accepting no matter what; I could learn much if I took more notice. It weathers storms as well as scorching sun without expectation or judgement, and today it is telling me in its own gentle way that very soon all will change, and it will be okay.
I don’t like change, but as we know it is the one constant in life. I researched the origin of these wise words; they were said by Heraclitus, a Greek philosopher pre Socrates; he lived 500 years BC. I think he and the tree in my garden would make a good team.
So, how do I manage this constant of change in the context of my illness and its pernicious nature as it steals more and more from me? I think, sometimes, not very well, although this may be a little harsh (tendency to berate myself lingers), until I remind myself or receive a reminder from elsewhere that tomorrow’s bit hasn’t been stolen yet, so why dwell on something that hasn’t happened.
Life’s journey takes us along many different roads; some of them we can feel are unwanted and, for me, Multiple Sclerosis is one of them. Along this frightening path so far I have stumbled over stones and tree stumps of disbelief, denial, grief and despair many times. Some of those tumbles have been headlong. I have sustained heavy bumps and bruises, most of them very distressing, but maybe necessary, to bring me to awareness within that I never thought was accessible, of coming to know myself with all my imperfections and faults, learning to acknowledge them without judgement, rather like the tree. As time passes, hopefully what I continue to learn will gift to me some wisdom to reflect on all I have accomplished in the past and to celebrate it so, rather than bemoan the fact that those things are no longer possible for me to do. I am presented with daily challenges (we all are), and I can either use these as opportunities for growth or see them as an obstacle in my way; the choice is mine.
The road is long. As a friend of mine says, who has travelled alongside the debilitating effects of MS for many years, “We do what we can till we can no longer do it, and then we find something else we can do”. The key for me is to keep on finding, and feel a sense of peace and contentment with it despite the changes, a new satisfying place to arrive at. I visualise a purple hillside strewn with heather where I can allow myself time to simply be, and admire the ever changing view of my part of the natural world.
Today the wind blows wild. Leaves are falling up instead of down; a few branches are broken, others have snapped and fallen to the ground. The tree stands tall, roots grounded firmly in equanimity.
The “Bee”!!
05 Nov 2013 57 Comments
in Poetry Tags: bee, disability, emotional roller coaster, halloween party, mood changes, MS, party, Thich Naht Hanh weather quote
Hi everyone,
I decided to post a photograph of myself as a bee at our recent Halloween party, one reason being for fun, as a few people have asked to see this “splendid” sight. But another reason is to lighten the mood a little after my last poem.
In order to manage this condition of MS, I often use practices which are Buddhist inspired. One such practice is to liken our emotions to the weather in its ever changing states, and simply allow ourselves to feel rather than fight the feelings, acknowledging that they are impermanent and will change.
I am a great follower of Thich Nhat Hanh, a Zen Buddhist monk, author, poet and peace activist. His book Peace Is Every Step has helped me enormously since my diagnosis, to come to terms with subsequent physical limitations and the accompanying roller coaster of emotions.
“Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor.”
― Thích Nhất Hạnh, Stepping into Freedom: Rules of Monastic Practice for Novices
The Party is Over and Pointless Wishing
30 Oct 2013 52 Comments
in Poetry Tags: balloon, disability, Halloween, independence like a casual accessory, limp, party is over, pointless wishing, pumpkin, tired
The Party is Over and Pointless Wishing
has reared its ugly head again.
I have a sense of being
left behind,
out of the loop of a life
that once defined me.
The Halloween party was a joy,
but it’s over now
and a bubble of “normal” I blew
for its duration has popped.
Family and friends have left,
wearing their independence
like a casual accessory
flung over a shoulder, and
I sit and look at the wonky,
creased up smile on a tired
pumpkin faced balloon
as it lies limp on the floor.
I, too, am limp;
I haven’t the energy to
pick it up
or to do anything else at all,
and writing poetry or reading,
which, especially at times such as this,
is what usually keeps me feeling alive,
just isn’t enough.
I simply want what I cannot have.