Sonnet

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.

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Glenda and Me – Swimming Away from the Titanic

Sometimes as we find ourselves wading through adversity and maybe feeling a little lost, the sweet fragrance of synchronicity fills the air and the room suddenly becomes laden with summer flowers in full bloom on a cold January morning.

When I decided to join a writing group 15 months ago. I entered the room tentatively and with trepidation, feeling somewhat clumsy with my four wheeled walker. I was even more nervous as I was joining a couple of weeks after the term had begun and felt the others would have already started getting to know each other.

As I was introducing myself the door opened very slowly and another lady new to the group was arriving.  She was in a powered wheelchair and took up her place next to me; we smiled. She introduced herself to the group as Glenda and a light bulb moment occurred for me. Was this the same Glenda who my hairdresser Chris, had told me about? He has been trying his best to make me look beautiful for many years so we always chat quite intimately, and because he knows of my MS he told me, not long after my diagnosis, of another client of his called Glenda, who  has MS and how he now goes to her home to do her hair as she can no longer sit at the salon. I had given Chris a copy of my Journey Into Poetry book and he asked me if I had a spare copy, could he have one to give to her because he knew she liked poetry. Glenda duly received her copy of the book.
During the break I plucked up the courage to speak to Glenda.
“Does Chris Wallbank by any chance cut your hair?” I said. She looked at me, a little puzzled, and said,
“Yes, he does, why?”.
“I’m called Christine”, I said,  “and I think you may have a copy of a poetry book I have written”.
“Oh my goodness”, she said,  “I have!  Chris has told me all about you!”.

We were not aware of it on that day, but a strong bond and friendship was about to begin.  A year later, we are firm friends and it feels like we have been so for years.
A while ago I was going through a difficult time with the MS and was telling Glenda all about it; she was very supportive. She is further along this rocky road we both ‘walk’  and has encountered, and been hit by, many huge, frightening boulders along the way and yet always remains positive, looking for the small daily gifts. To use her words, “Adversity heightens our enjoyment of life as it keeps us more in the moment as we experience it, and it creates shining highlights for us”.
Her wonderful support that day led to my writing the following poem for her. I emailed it to her and she told me she was overwhelmed by the fact that I had written it for her.  We become closer by the day.

Swimming Away from The Titanic

I suppose we are quite different
in many ways.
But here we are, thrown together
at a random moment in time
by creativity and illness,
two of us keeping afloat
on the same flotsam of
our own personal Titanic,
waltzing with icebergs.

She seems better at it than me somehow,
this illness thing,
more professional, more skilled
while I flounder about, a mere trainee
unable to cope with this or that
or the other.

I wish acceptance grew on trees.

I ask her for advice,
tell her how I cant stop crying
at something seemingly trivial
and she understands.

I want to be able to help her too;
maybe I do.

We have come together
at different stages of our journey
and I am very grateful.
I look for something to thank
so I gaze at the stars
with their brimming drops of light,
and say thank you for a cold January morning
when limbs protested far too much,
and we both grappled for the same
small piece of wreckage that is still afloat.

Maybe one day, together, we will swim away.

Winter

Winter – (sonnet)

How sad and pale the tree is looking now
her faded skin, dry bones that now pierce through
and shiver every twig along the bough
as if she dreads what now may be her due.
Does she grieve the loss of summer’s face
when filled with life she whispered with the breeze,
or simply bow her head with gentle grace
to brilliance that waits beneath to ease
our aching hearts, for all, it seems, is dead.
There is no rush, the earth will slowly move
her way through darkness, new seeds to be fed
and once again her certainty will prove
that season’s change has come for reasons known,
embryonic life already sown.

The Tree, Heraclitus and Me

 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.

 

Update and a poem – A Wheelchair Called Wilmer

I have just returned from a trip to Ireland; it has taken me over a year to do it.
Until now I simply haven’t had the emotional strength to accomplish it, as the
only way it was possible was with the aid of a wheelchair.
As I “grow into” managing chronic illness, I am re-learning the process of
acceptance with all its complexities. The biggest thing I have learned so far
is to have compassion for myself. The numerous hurdles will be cleared
when it is their time; I have ceased berating myself for taking “too long” to
accomplish the next thing. One of these next things is to actually own a
wheelchair rather than hire one. This may or may not happen soon.
I just need to keep chipping away at my part of the process.

The following poem was written in Ireland after my first long wheelchair “trek”.

A Wheelchair Called Wilmer

It was definitely on its last wheels,
heavily weighed down with ghost scars,
years of invisible struggles piled,
precarious, on an old sagging seat.
If I hadn’t been so heavily reliant,
I would have jumped off and
helped it into the lift.

Then a waitress on the ferry
knocked it as she passed.
It quivered like a frightened dog
and I felt sad.
A strange feeling of empathy
washed over me and I reached out
and touched it, gave it a name.
I told her not to fret and said
this time she could travel light.
There would be no scars left by me;
this was going to be a good trip.

Journal Entry – Bruce Springsteen Concert

 

 

Wednesday July 24^{th –} Part 1

This morning I am consumed by three feelings, excitement, anxiety and fear.  I am going to a concert tonight and I am excited.  I will be going to a new state of the art arena on its opening night, and whatever the collective name is for butterflies, I have it deep in my stomach; it is obviously as excited as I am at the prospect of seeing Brue Springsteen live. Not that I am “into him” in any big way, but his music evokes in me memories of a time  when I was, and I am looking forward to the atmosphere of a live concert as much as the music itself.  The butterflies have divided into groups matching how I feel, and some are clinging fervently to fear and anxiety.  Why?

Because in order to do what I am going to do tonight, I need to use a wheelchair for the first time. So I have been working hard on changing my attitude toward my illness and its progression. The tickets were booked back in February; the concert seemed an age away and it was very easy to decide to go.  I have given it very little thought since then thinking, perhaps in a rather convoluted way, that July might never arrive and I wouldn’t have to face what is now upon me, at the same time wanting very much to face it willingly.

I spoke yesterday to a friend in the same situation, but an “old hand” and she suggested to me that by agreeing to use a wheelchair I am being kind to myself, showing care and compassion. This makes sense to me, I think. (I am smiling; it’s not as though thousands of people are going to the arena tonight to see me).  She then said, “If you feel you need to, just wear a fake pot and pretend you’ve broken your leg”.  This made me laugh and ponder the strangeness of the human mind, how we can so easily think illogically.

Time to go and get ready for “The Boss”.

July 25^th – Part 2

This morning I am feeling soberly hung over. I am still drinking in, absorbing and processing the success of last night’s efforts. I also feel very proud of myself for finally breaking down another huge barrier surrounding this illness. Oh, and Bruce was pretty good too! He performed non stop for more than three hours and his audience participation skills left me smiling out loud. He was well worth the heartache I had given myself in the weeks preceding the concert, and I had dished myself more than a fair share.

The wheelchair experience wasn’t anywhere near as traumatic as I had imagined it would be. I just kept in mind the words of my friend, who said that when sitting in a wheelchair, we have a very different view of the world; it consists mainly of bums!  I now know this to be true!

I do believe that most things we go through in life involve a process. When I was in early recovery from alcoholism, I learned that we change things when we have had enough pain; until this happens it is not possible to move forward.  It applies in other areas of life too.  I am aware that I recently arrived at a place where the desire to do something, in this case, go to the concert, began to outweigh the fear and anxiety of accepting a wheelchair, the end result being a chance to move forward toward new adventures.

My souvenirs from last night’s concert – a programme, (£15!!!! but essential!), a T shirt, a mug, and a gentle reinforcement of the knowledge that nothing changes if nothing changes.

Let It Be

Cry your heart out if you need to,
rail against the world and
all its seeming unfairness,
because acceptance isn’t a pretty gift
tied with pastel ribbon bows;
it’s a trundling wagon making its
way clumsily over rough terrain,
and you may often

lose your grip, fall off in the
desert sand, find yourself on
all fours like in a bad dream
trying to catch up, cling on,
feet dragging in flying dust,
helpless and hopeless.

What I think I’m trying to say
is keep going, keep clinging,
reach out and don’t ever give up,
but allow your sorrow
its rightful place;
let it be.
It is real.

 

When We are Ready

Life can be full of challenges,
some of them towering exclamation marks.
I call them hurdles,
not in negativity, but because I believe
we clear them when we are ready
and not a moment before.

Like a young horse being asked
to jump for the first time,
tentative, doubtful, afraid;
a few firm refusals,
perhaps kindly led by hand
for a while, encouraged gently
though with persistence.
But when he is ready to go
he knows,
and oh, how he flies!

And so will I.

This poem was written when I finally
purchased a mobility scooter last week;
not a decision reached with ease.

Dancing in the Dark

In my mind I am still Dancing
(with Bruce Springsteen)
in the Dark;
those kind, moonlit hours
that shower me with freedom
to feel like me again,
till daylight beckons when
I leave him to his Glory Days
and I to mine.
And they can be glorious
if I let them.
But I will dance again tonight;
I’m told there’s a new moon.

Bruce Springsteen – Album – Born in the USA. Released 1984

Dancing in the Dark
Glory Days

 

Trapped

Acceptance just flew away.

Accompanied two magpies as
they took off over gardens,
into distant fields now green again,
able to breath from welcome thaw.

I opened the door,
saw the grass,
sensed a sharp edged wind
as loving as it was harsh,
brush against a pale
complaisant sun.

And I wanted to run again.