I’ve always had the heart of a writer and it’s at
times of great difficulty or trauma I turn to writing for my therapy. A lot has
happened over the last few months and I want to try and channel the sunshine
through the storm because right now there is so much storm I feel like I am
going down with the ship. Instead of focusing on the trauma I want to look back
at my life and share the memories that are the things I grip to when the
physical suffering is almost unbearable. I want to write all these down. I want
to remember when life was bigger then it can be now.
I couldn't start recalling anything without starting in Canada. I understand you may think the thing I would, or should start with and cling to is my child and my husband. I have to be honest though in times like this when things are so hard and as deeply as I love them they are part of the storm because I see their pain, anxiety and grief at the journey my health has taken us on so. I feel their tears crashing down on me like the sea envelopes the rocks by the shore and over time as water does it changes the shape of a soul.
When I am undergoing some awful medical procedure that feels
like medieval torture, the pain is too much to bear, I’m waiting to be put under for a major surgery or I’m fighting
for my life in my mind I go to Canada. Every time.
We have dear friends, who really now are family I have known my entire life and my first thoughts are always sat on Lorne and Marilyn’s porch stripping corn,
don’t ask me why when I have all these incredible experiences in Canada that
that is where I go first but it is. I’m sat on the porch with Judi another family friend stripping
corn. Marilyn is in the kitchen, Lorne is at the BBQ and everyone else is
milling around and I feel completely and totally safe and at peace. It’s hot
and I am in the place my heart always felt most at home until I met my husband and a few years later we moved to where we live now.
I float from that memory to another. We are walking through
the woods, those woods that felt so magical and exciting and how like every
thrilling woods in children’s literature tells you they should be. My sister and I are walking to Frog
Pond with Melanie and Erica and even in my young mind I still remember feeling
absolutely astounded that THIS was just beyond someone’s backyard. There are no fences or barriers from the yard to the woods and the woods to the pond (which really is what we in the UK would call a lake but compared to lakes in Canada which have their own tides really is a pond!!) it was so joyful to me.
I remember drinking vast amounts of Rootbeer which my
sister and I would pretend was real beer in our games which felt so grown up
and important and we would eat our weight in Tim Horton’s donuts. How many
times I have been having tubes pushed or pulled in or out of my body retching
and crying involuntarily naming all the types of TimBits I could in my mind to
remind myself in that horror that pleasure exists in the world and has in my
life. Sometimes with my prognosis I contemplate having a bucket list, or a f*ck
it list as my adopted sister Misty and I call it (that’s a story for another day)
and I often think out of everything I could put on it a weekly delivery of 32
TimBits that I could eat (well chew and spit, sorry it’s gross but if you
couldn’t swallow food anymore would you give it up entirely?) all to myself
would be top of the list. Before anything. 32 Timbits. Timbits are the hole from a ring donut with all the taste and filling as it's, (I don't know what to call it! A donut surrogate?! Ha!) counterpart. Whoever thought to keep the donut is a genius!
You may have had a Krispy Kreme donut but in my
opinion you haven’t lived until you’ve eaten Tim Hortons, their hot chocolate
is also a drink of the God’s, the best in the world. In my mind anyway. That’s
probably all those happy endorphins those times produced mixed in with the
powder to give it its taste!
Stan Rogers, Tanglefoot and The Rankin Family (All Canadian folk singers) can drift me out of
the most intense suffering whether that’s physical or emotional. You wouldn’t
believe the emotions that hit you when a bed is brought in next to yours so
your husband doesn’t have to leave your side. A body can only endure so much and
Stan Rogers voice is my lullaby, it is like wrapping up in a warm blanket in
front of a fire. It takes me back to
making smore’s, what a day that was, I don’t think you ever forget your first
smore. I will forever hold a place in my heart for whoever came up with that
idea!
I was blessed
to meet the love of my life at the tender age of 17 and I haven’t loved anyone
else romantically since, Stan Roger’s 45 years, is my song for my
beautiful man. That is my gift I pass on to him. “And I just wanna hold you
closer than I held anyone before, you say you’ve been twice a wife and you’re
through with life oh but honey what the hell’s it for? After 23 years you think
I could find a way to let you know somehow, that I wanna see your smiling face
45 years from now”. I really do. I want to see his smiling face 45 years from
now.
The machines that beep around me I try to get in time
to some campfire song Lorne taught us or a rousing Canadian folk song. It won’t
mean anything if you don’t know the song but oh the times I have been singing “GOD
DAMN THEM ALL” from the song Barret’s Privateers by Stan Rogers in my head or “BLUDGEN THE
BASTARDS” from Tanglefoot’s Seven a side when I’ve had to bear down on anger
and grit to get through. I don’t like going there but there are times I must. I
am in a fight and it won’t be to the death, not yet, I have more to do. I let
anger build in my chest and in my mind build a fort around me, a fort solid and
safe. It’s only once the assault is over and the fort walls break down that the
tears and anxiety come. Amazing how you can not fear death when you face it but
fear it after you have passed it. That’s when I lay in Tony’s arms and sob at
just the injustice of it all. This isn’t right. No one should face this. I
struggle when people say ‘’You don’t deserve this’’ because no one... no one
deserves this. There is such much love and joy in my life too but I cannot
ignore when this disease has ripped through us as a family. If I did it be failing
everyone else living with the disease.
To soothe myself when those feelings flare I go back
to the beach we arrived at one evening whilst on holiday in Canada, around dusk, the beach was littered
with star fish and my sister and I threw them back into the sea, I remind
myself they got a second chance, maybe it was their third, four or fifth and I
take comfort that I have those chances too. I allow myself to believe I am the starfish and someone is going to throw me back into the ocean.
I transport myself too over the other side of Canada
with different friends (who again have become family) on the other side of Canada on a prairie farm so vast I can barely believe it, in so
many of my childhood games in my mind I was a pioneer in Canada and here it was actually before me. You have never seen a sky so big until you have stood
in prairie land. It sounds crazy but the sky is HUGE. There’s nothing like it
in the UK. It is spectacular and if I ever need to be reminded how small I am
in the grand scheme of things that is where my mind goes. The hospitality from
Cindy and Henry was as big as the sky!
The excitement of experiencing my very first county
show still brings a sense of warmth to my chest. So much to see and experience
and everything was just so…big! I had been writing with Charlene who was the same age as me and when we were allowed to go around the show by ourselves I felt so grown up and in my mind allowed myself to believe I was indeed Canadian and no one knew any different. That is of course until I opened my mouth and spoke! 7 Brides for 7 Brothers was my and my sister's favourite movie as children and again a game we frequently played! Although that is set in America I use to pretend it was in Canada and being at that show was like it was the modern reality of 7 Brides.
My heart swells at the memory of sitting down with
everyone for meals whilst staying with Cindy and Henry, this huge gaggle of us, two families combined and no
unrest. Like when we stayed with Marilyn and Lorne it was just so easy.
Maybe that is one of the reasons I long for Canada so
and it is always the place my heart and mind takes me. I never felt unrest in
Canada. Everything was just…so.
Oh Gosh I remember going with just my Mum at Easter to Marilyn and Lorne's one year and a large Passover was planned, being the youngest in the house
apparently tradition called that I speak part of the Passover... in Hebrew! I was
so desperate to get it right over and over I went on reciting it in my head, trying to
phonetically get it which is….tricky to say the least. I just know my love and adoration for
Lorne ran so deep I wanted to do a good job. Goodness knows if I did but I took
my responsibility seriously and as a woman now it brings a smile to my face. To this day I couldn't tell you the translation was of what I said! I guess I should have asked at the time!
It was during that Easter break that I got one on one time with Melanie and Lara (Marilyn and Lorne's adult daughters that again, I'd known my entire life) and that, was a 10 almost 11 year old girl felt like the "coolest" thing... EVER, can you imagine!! One evening Lara took me to the mall and to this day every single time I hear "Video killed the radio star" those memories come flooding back and I want to talk about them so much so that now when we hear it Amelia (before I can start!) starts recalling them to me!! I can't say she has the same enthusiasm telling them as I do!
Melanie had always been very kind writing back to me and being my penpal and one evening had me over to her apartment to have a takeout pizza and movie night which once more, when you're 10 feels like the coolest thing ever. I think when you're a child and begin to get those nuggets of independence you lap them up and they stay with you your whole life, before and since I have never had pizza taste so good or watched a better film (even though I couldn't tell you for the life of me what it was we watched that night!)
When Melanie was 16 she and another family friend (once more I say friend but now they are family) called Dan came and stayed with us and we showed them good old 'blighty' (Britain) during the summer (which meant visiting a lot of landmarks in the wind and rain, a REAL experience of the British summertime) and the Christmas of 2019 Dan flew over and spent Christmas with us which was such a treat! I'd been in hospital for 2 months by then (with another 2 to go) and was given home leave from Christmas eve morning until I had to return boxing day. All the children absolutely adored having Dan over and it was so very special to see that next generation starting to build a relationship and memories with our Canadian family.
I am incredibly incredibly blessed with the wonderful Canadians I have met (well my parents met and as a child I was taken along for the ride!) in my life.
Off again I go beyond the suffering and in my mind I drift to all the
antique shops we went through on so many different excursions with Marilyn and
Judi, there were so many antique shops and it’s easy to meditate on all the
treasure inside, to focus in on something beautiful and rare and create a story
for it rather then feel what my body is dragging me through. I find joy in those
stories. I imagine what the shop keepers looked like and create spectacular lives
for them. I’m not in my life then, I am in theirs. I'm not in hospital. I'm free.
I have stood in The Rockies and seen lakes so blue
they are turquoise, like sheets of crystals. Completely, totally untouched,
surely it is a painting but no, I walked amongst the trees, I smelled the forest, I hiked down to the water. I’m sure my mind could never fully recreate such a beautiful scene but I
try.
I’ll never be able to express my gratitude to the wonderful once band Tanglefoot (who disbanded a few years ago to pursue new chapters) because they brought pieces of Canada to me when life made it so I couldn’t go anymore. That became especially poignant once the illness kicked in because I have many beautiful happy memories of twirling, dancing and throwing Amelia around (not literally, just in glorious free dance) as a baby and toddler to their music… how we would twirl, Amelia’s long hair chasing behind them.
I had the joy of Canada pulsing through me before I was
ill and now because I have those memories I can close my eyes and still I am
dancing. I am twirling. I can feel my muscles remembering how that felt, I can
feel the music in every part of my body and soul. I had a song I would dance in
total abandonment to with my Mum as a child, called Mairi’s wedding so it is special
to have those memories with my own child. Down another generation.
Amelia was actually born whilst a Tanglefoot song called "For the day" was playing. There is a song of theirs ‘’Jenny
Wren’’ (available on spotify) and if I had to pick one song to listen to for the
rest of my life that would be it. When it looks like I might not be winning the
battle Tony knows to put that song on repeat in my headphones even if I’m not conscious.
When I am lonely and afraid in hospital a long way from home I listen to it, I couldn't count the hours I must have heard that song play for the last 10 years since my body started falling apart! It has become like the cement that gives me the foundation to rebuild when everything physically has been knocked over again. It makes me dig deep. I am Jenny Wren and my EDS most definitely
is the devil and it most definitely didn’t know I could fly. It reminds me in
all this I have held onto my soul, There may be a day that my body can’t do
this anymore but I hope people can rejoice because just like in the song I’ve
swept right out the window.
Jenny Wren they say you dance with the devil,
Jenny Wren they say you move like an angel,
Jenny Wren how did you hang onto your soul?
You burned up the floor with your spinning and
turning,
Jenny Wren do you think you were learning,
What you already knew,
How it feels to fly.
The music was
reaching,
Down through
your body and up to the sky,
The devil endeavored
to have you forever,
But he didn’t
know you knew how to fly,
Jenny Wren you seemed to be in a trance,
When your feet left the floor and you kept right on
dancing,
The people all thought, the devil had got your soul,
Like dry Autumn leaves that dance when the wind blows,
You and your partner swept out the window,
Old men wept, young girls were heard to sigh,
The fiddle was screeching,
The music was reaching,
Down through your body and up to the sky,
The devil endeavored to have you forever,
But he didn’t know you knew how to fly,
***********************************************************
I’ll leave you to listen to the fantastic beast monologue halfway through the song!
I can't say how frequently I'm going to be able to write this blog again but I'm really pleased the journey has begun and like I say, it couldn't have happened anywhere else in the world.
