Guest MS & Me Blog from Stefan

My name is Stefan I'm 32 and live in London. I was diagnosed with MS in 2017. I am a teacher, a poet and a huge swimmer. I hope you enjoy this poem and also hope that you know that you are not by yourself in dealing with MS. I wrote this poem because my friend thought it would be a good idea and that it would help me. He was right and now I want to share my experiences with you. Always remember you are not alone! Enjoy the poem. 

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 travelled, 

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

The views and opinions expressed here are those of individual contributors and do not necessarily reflect the views of the Multiple Sclerosis Society of Ireland. Whilst every effort has been made to ensure accuracy of the information provided, the editor is not responsible for any error or inaccuracy contained herein.
If you have been affected by any of the content, please contact the MS Ireland Information Line on 0818 233 233

Comments

Hi Stefan
First of all ... Thank you for sharing .... and one word that I would love to share with you is "gifted"
Your piece is powerful , a strong punch of reality , and a warm essence of inspiration , and motivation
you have a beautiful gift in expressing through words , that was music to my ears ... and spoke a unique message of its own
Thank you , it brought a smile to my face ..

I am so glad you enjoyed it! Thank you for the comments!

Very powerful poem Stefan! You really captured the raw emotions of despair, helplessness, determination and everything in between. So true about the stages of grief repeating over and over. Love that swimming is one of your superpowers - I love it too. You have an amazing talent for words. Thanks for sharing & best wishes!

Hiya I am glad you liked it! Thank you for your comments.

It's funny because that is exactly how I describe my swimming, I remember once I was away with my wife and we went to the beach. I limped to the sea front and people were watching me, which i'm used too😅. Anyway, I got in the sea and did my swimming and got out 2mins later (need to cool off), people were watching me again but this time it was different.

I love when that happens, people often say something to me too.

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