Long... Difficult... Scattered... Unrelenting!!
So I will keep it simple here for the moment. I was out climbing one day the year after finishing my UIAGM Mountain guides qualifications. I was leading the 2nd or 3rd rope length of a 6 pitch climb and my head started spinning, or the mountain started spinning. My partner got me to the top safely.
That was my first of 3 or 4 attacks that summer. At the same time I started getting crazy amounts of tinnitus. My doctors told me to wait and see, diagnosis was difficult until further tests were done.
By fall I was fine and we thought the worst was over. I guided clients all winter and ski toured through to the last week of the season without a single vertigo attack. And lo and behold on my last week of work walking across the alps on skis the vertigo came back for another visit.
4-5 years after that first episode doctors were finally leaning towards a Menieres Disease diagnosis, and the best remedy they had for me was go home and learn to live with the loss of hearing, constant tinnitus and random episodes of vertigo / dizziness / grogginess. There were times when I was having vertigo once a week and there were plenty of 4-8 month remissions where I was able to continue with my guiding career, but I never did tie my rope to a client ever again.
Needles to say my career as an International Mountain Guide was having difficulties.
In 2012 I decided to take a break from guiding and look at my life from another angle. Thats when my hopes of starting a Swiss Menieres Disease Association began. I still want to do that, but I need a network of people to work with and now I would rather raise lots and lots of money to put into research. The money could go into Vestibular research just as easily as tinnitus research or hearing loss research as long as it is centered around Menieres Disease.
After years of having tried everything from physiotherapy, acupuncture, medications, homeopathy, and many many more treatments of all types, I have come to realize that there is nothing out there yet to cure me or anyone else of Menieres Disease.
Ok so its not going to kill me!! But it has shut a lot of doors that I was hoping to have open for the years to come.
I'm looking forward to the day when Doctors or therapists or anyone with a bright idea will find a cure for this horrible condition that so many people are suffering with. As time goes on I meet more and more people that are suffering from symptoms similar to mine and have never been diagnosed. Some 'only' have tinnitus, some 'only have a bit of hearing loss, and some are stubborn enough to think that feeling groggy is normal.
I guess it depends a lot on where your dreams are fulfilled, mine were on the tops of the mountains and luckily I still have the possibility to go there now and then. I consider myself one of the 'lucky' Menieres sufferers and plan on using that luck to help all those that are completely unable to leave the house due the the persistence of their symptoms.
Oh
Menieres Disease
Oh Menieres disease,
my dear menieres disease.
Oh how I would love you, if you
would just go.
I know you have come to like it
here, but you are no longer needed in my ear.
You have broken me down!
Bit by bit,
peice by peice.
One dream at a time you have
broken me down.
The time has come for me to break
you down,
bit by bit,
peice by peice.
One symptom at a time, I shall
brake you down.
Oh vertigo, my dear vertigo.
Oh tinnitus, my dear tinnitus.
Oh hearing loss, my dear hearing
loss.
Oh brain fog, my dear favorite
brain fog.
Not to mention all the other
symptoms of symptoms of menieres disease, some of which could be
considered as diseases in their own right.
Anxiety, depression, loneliness,
antisocial behavior, fatigue, insomnia, blurred vision, aural
fullness, head aches, migraines, hyperacusis, anger, naussea,
weakness, and oh so many more!!
You four are the accepted four,
the four that make one,
Oh menieres disease.
I would have been satisfied with
just one of you, but you all ganged up and chose to come as one.
Oh, Menieres disease.
Oh vertigo, oh vertigo, my dear
dear friend vertigo.
Oh how I wish you would just
go...
You come as you please!
You spin shake rattle and roll,
and you go without warning only
to surprise me once again, when you please.
I do my best to apease you when
you visit,
and when you go, I obviously hope
you never come back.
You take my courage and crush my
ambitions... I am left rewriting all my dreams.
I love the remissions... enough
to let you know that I am done fighting with you.
You WIN!
Oh tinnitus, oh tinnitus, my dear
dear buddy tinnitus.
As you endlessly whistle, rumble
and buzz in my head, I silently cry for silence.
Silence, the most under rated
form of non-noise, that I would love to hear again.
When I finaly manage to accept
you, you choose to change your tune.
I just want to let you know, I no
longer want you in my head.
If and when you do manage to go,
please remember never to come back.
You have won and you are no
longer welcome!
Oh hearing loss, oh hearing loss,
my dear companion hearing loss.
You were the first to show,
without any sign of your friends in tow.
You are nothing, yet you have
taken the most and left me with 'what, I'm sorry, pardon me?'.
I'd love a little silence to help
grieve my loss.
I now find myself lip reading
without knowing how.
So much for communication!!
You WIN!
Oh brain fog, oh brain fog, my
dear beloved brain fog.
Now aren't you a great one to
have around.
I do my best to get on with your
mates yet you stand in the way.
I make plans I take notes and yet
your cloud never clears.
You leave me speechless in a
state of poor expression, longing for the bygone days when decisions
were easy.
You make it really hard to heal.
Oh menieres, oh menieres my dear
old menieres disease.
How I could live without you!!
You come disguised as a team of
four.
You brake me down and beat me up,
bit by bit,
peice by peice.
First goes my hearing than comes
the screaching,
without warning you set yourself
to spinning, boucing and wobbling.
It really is no wonder, I've lost
all sense of direction.
Oh menieres disease my dear
menieres disease!
You've taken my mountains, you've
taken my friends.
You've taken my hearing, and left
me with screaching.
My jobs absolete and my future is
unstable.
You've left me in bits and
peices!!
You leave me with not much hope
and very few possibilities!
I've become the innocent
bystander in a life I never knew existed.
My thoughts are jumbled and my
expressions mumbled, my visions unfocused.
I come in peace, with arms full
of hope and compromises, and yet you show no signs of retreat.
But let me make one thing clear,
for as long as you leave me standing with one scrap of hope, I will
continue the on the trail that you oblige me to follow an I will look
for better ways to coexist with you in my mind, body, and soul.
But I do think you should just
go.
Oh! How I wish you would just
GO!!
Trust me... I'll get back to
being me as soon as you do, leave me be!
Stephen Hadik
UIAGM Mountain Guide
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