"My journey with MS" - a poem
Stefan, who was diagnosed with relapsing remitting MS in his final year of university, shares a poem he wrote that explores his journey with MS.
I hope this poem can help someone, even if it's just one person. I wrote it because my friend told me it could help my depression and because he knows I like to write poetry. I found that writing this was therapeutic and helpful for me. Something that I used to find embarrassing (like my bladder problems) I found easy to talk about. I hope hearing me talk about it can help someone else.
My journey with MS
At times I speak slurred
lacking clarity.
Unless
I speak
slowly.
Anyway
I remember that night and my sight,
A traffic light with a dulled glow was a sight
or
lack of.
Of course eye was told that my sight would not be restored - Typical.
Fam, this is not a joke ting I was vex and I wanted to flip,
but
Nothing could be done,
I wanted to run,
but anger revolted they held me. My vision
was tinged
with denial.
It just did not feel real.
I liked to run although not quite like the video, catching Kayla.
Instead of a track I'd run and collapse at the door - Numbness.
What's more, counting to thirty became Difficult.
Memory problems
are 'Invisible',
I grew Irritable, and that was not invisible...
I struggled to count to 30, the Embarrassment,
I knew something was wrong.
In the end I returned to education,
once more I Felt normal
till my words
stumbled, they ran with no regard to clarity. I often finished sentences
with sounds or phrases.
seminars were a mental magnifying glass.
On my potential condition,
A drama, my own rendition,
I focus on the word 'potential'
Because everyone with MS not diagnosed knows they Have something – fact
In the end I changed the way I speak
the past, present and future were always
changing and overlapping.
I began to feel walls for balance,
anything really;
not many people know how loyal a wall is,
Tis always there, supporting you,
It never changes
Bill Withers,
To all
Thank you.
Videos of I were a snapshot of my
condition, physically and mentally I had come far;
I was scarred and scared,
for I knew of only one person who had the condition
and that did not help...
I'd say I was a Scared boy for I knew little and Cared Too Much.
Sober I'd walk and talk, but
nevertheless
a stranger
dared to ask if I was Drunk,
despite the wires running down my leg.
There was also the time I Cried
as I was not served alcohol,
Apparently, I was Drunk
so I paid and left.
I went to a bar, I
waited for my girlfriend now Wife
and Cried
like a baby;
because of this Now I rarely drink in
public.
I also had
a seminar for
English Literature.
I forgot what my class had discussed,
It's normal I know, but what if I told you it's Daily?
I answered a past question,
some
Ridicule
and
Pity
My final year, Enter spasticity and the worsening fatigue.
Spasticity to me,
wastes Energy
and I don't have lots of that to give...
My leg bounces even once I have finished
moving
I've lost balance too, so again,
I am not Drunk
Now I admit
sleep?
Is used sometimes as a time skip
I can be tired
As sometimes I do not want to
deal with it.
Fatigue? I'll elaborate.
Each step is late, slow so
I wade through invisible mud
the thickness cannot be seen only
Felt.
This year was by far the toughest,
not because of uni; not because I had just moved; or work;
Or even the night buses from uni going home,
but because of the
Diagnoses;
Perhaps this is where an early depression started.
Despite the MS Society and their
Orange, The Swedish Syringe hinged on the good; out weighing the dark dingy depression - Escape.
Anyone who has been in that state knows how dark depression is.
My 5 stages of grief: Denial check
My old familiar - Anger.
I was angry most of the time
To the people affected, I am sorry.
Bargaining, despite rumors nothing could ‘cure’ MS - Fact, maybe One Day.
Depression damn that was tough,
man.
The ‘last’ stage 'Acceptance', it has been over 9 years, I have finally Accepted my diagnosis. But
the phrase ‘last stage’ is incorrect
There is no last stage.
Sad, right?
The stages age, hibernate till Next time.
The cycle is endless.
My pace was changing and still does,
Now, I lean and touch everything. I sometimes trip
because of my drop foot.
Often I am in pain
but no one really notices.
Once my face would reveal winces, and since this
I've learnt to disguise my lies.
The things people do not see bother me daily like
Processing speed
MS
An acronym? It's so much more and My Nerves are a wish for Normality.
Also battling the elements can be tough.
I have forgotten what Normality feels like. Or at least what regular balance feels like and let's throw the bladder problem in there too.
Always searching for a loo
sometimes there is urgency,
accidents can happen
also
Eating my dinner sometimes
takes two
although,
you may think two is too many
My hands and arms can feel
heavy.
It took a while to acknowledge that
sometimes
I need help
so
sometimes
my Wife helps me
eat.
And often I stretch,
like I just woke up
the stretch briefly erases my hourly
stiffness.
Check this,
in some ways
it's
Some weird type of
Paralysis.
And... It's not my choice
Don't Touch Me
when it happens
I've got no balance.
Only talents with
No
balance.
You may guess that
My leg is weak,
And is also, at times,
half asleep.
So instead let's discuss fingers,
when I write or type I dread
the weakness
as it ironically travels
Quietly and Quite Quickly
watch me deteriorate
from
fingers
to my hamstring
to my
calf
to my
ankle
until my whole leg struggles.
To Lift
Anyway,
now I'd say that now
my pace is Eventually
A Walking Stick is Often Used,
but,
In the Pool i'm Weightless and Painless,
I'm a black shark it's over.
I remember a trip to the Zoo.
My splint went over my trousers
On display for the public to see.
I No longer cared.
Before I was embarrassed,
Now with the strength I've harnessed,
I can now admit it is MY MS and MY disease, it's Mine
there's No denial no more.
One of my walking sticks has a metallic golden lion
On top
I'm not lying or
Stretching the truth
With my MS I have traveled,
I've Conquered the Conquest of Hikes I've seen Volcanoes and Mountains; like Mt Etna and Mt Blanc, Different heights, Long days, twists and turns,
I'm a published Poet and
Swimming will Forever be my thing,
I've
Contested the fear of traveling - alone
taught in a foreign place,
Memories.
I was on pace for a 2:1 but
that final year was tough I wanted to drop out from uni..... but
I didn't
I Graduated with a 2:2
No one can take my degree away although not just the
Degree
But my MS Journey....
MS Didn't win anything
I did, I Won It
All.
But hey, everyday with MS is different.
But I now know my MS journey has only just Begun