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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based on given prompts.

Tuesday 21st April: Reflection 

This is a day to reflect.  For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day.  Reflect on your journey today.  What are your thoughts and hopes for the future?

Currently, I am reading an emotional and uplifting book, called The Life List, by author Lori Nelson Spielman.  It tells the story of loving daughter Brett Bohlinger, struggling after the death of her beloved mother.  In the book, she is left not only struggling with the death of her mother, but also is then left to pick up the pieces of her shattered life, after also losing her job at the family business, and then learning that her mother’s will, has one big stipulation – to receive her inheritance, Brett must first complete the life list of goals she’s written at the age of fourteen.

The Life List by Lori Nelson Spielman
The Life List by Lori Nelson Spielman

In the book, therefore, she is reintroduced to the goals and ambitions she made as a child and to reflect on the choices she has since made and the life she is currently living.

During my formative teenage years, although I never made a written list of the goals that I wanted for my life, just like anyone else I envisaged what my future would look like; marriage to a wonderful and kind man, a couple of children, and a successful career helping people for instance.

It is interesting though to ask about the efficacy of making such life lists.  Are they a useful tool to direct your future toward a life that you wish to live?  Or, do they only serve for disappointment when the life you saw for yourself is so far removed from your current reality?

For those living with chronic illness, for example, none of us or wanted or imagined the life that we have been stuck with.

There is nothing we want more than to be productive members of society, but unfortunately, our bodies have other plans.

Once upon a time, we imagined a life full of love, happiness, career successes, but instead, our lives revolve around our symptoms, hospital appointments and cancelled plans.

What would your ideal life list look like?
What would your ideal life list look like?

Admittedly, if I were to compare the life that I saw for myself as a teenager, like Brett in the book, and the life that, as if often seems, was planned for me, I would feel enviable disappointment regarding my life, and envy for those who are still able to pursue their life-long dreams and ambitions.

In the book, however, Brett embarks on a personal journey in search of her adolescent dreams, and by doing so she finds that life’s sweetest gifts can be found in truly unexpected places, and happiness can look remarkably different to the life that we imagined or had planned in a life-list.

And I believe that living with a chronic illness can also teach similar lessons; our lives may not have turned out as we imagined, but sometimes we may find little gifts which make life better than the one we imagined.  For instance, if it were not for the neurological condition I live with then I would not have found a passion for blogging, and I like to think that although I do not have a career which entails helping people, I do good work maintaining this blog and perhaps helping others in the process.

Another gift I have discovered on this chronic illness journey is the wonderful friends I have made along the way, and continue to make every day.

The support and friendship among the ‘spoonie’ community are astounding, and every day I am discovering new friends who are special and making friendships that will last for many years to come.

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Reflection…This is a day to reflect.  For WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted.  Reflect on your journey to this day, what are your thoughts and hopes for the future

I am writing this post whilst lying in bed.  It’s yet another bad day thanks to the neurological condition that I live with; it’s another day in which my legs are incredibly weak, and the trembling in them is severe that I am unable to walk far and so I am confined to my bed.  It’s days like this which we are able to reflect – to reflect on the past, present as well as what might have been and dream of a brighter future despite illness.

I was a typical girly girl when I was a child. I loved the fairy tales and the idea of a happily ever after.  That’s what I thought would happen when I grew up – that I would meet my own prince, get married and then live happily ever after.  I had a very naive and child-like view of the world, and suppose my parents shielded me from the horrors and sadness that can very often exist in the world.  Never did I imagine that I would live a life, like the one I am stuck in, I suppose that no one imagines a life with a neurological condition or any chronic illness.  But that was the hand that I was dealt.

I obviously grew up, and developed enough self-esteem to realise that my happiness was not dependant on some hypothetical Prince Charming to sweep me off my feet.  Instead, I dreamt of going to university in order to establish a career for myself.  I eventually decided to study Psychology with the aim of finding work to help other people in need of support and understanding.

However, this particular dream was not to be, and instead of graduating with honours from University and entering the world of employment or even further study, my symptoms became worse.  As an alternative to attending job interviews, my life became all about attending doctors’ and hospital appointments, to attempt to find the cause of my worsening symptoms.  It was to be a long and difficult journey on the road to diagnosis; for example gaining the original referral to see a neurological consultant was a battle as the GP was adamant that my symptoms could be explained by the anxiety disorder I had originally been diagnosed with.  That and long waiting lists to see consultants and for tests to be conducted.

Now, I have a definitive diagnosis.  It might not be what I wanted or expected and the knowledge that the condition was a life-long one was both a shock and a disappointment – knowing that the symptoms may get progressively worse, and the knowledge that the symptoms may prevent from me from ever being to work.  Yes, the journey has been difficult and the symptoms have become worse but on reflection I have learnt that despite being diagnosed with an untreatable and long-term neurological condition does not mean the end of my life.  Life indeed does go on, and despite not being able to work I have discovered that I can still have a purpose in life and help others.  I am involved with a new community for those affected by neurological conditions called Neuro Nula  and am excited by not only the work that I have already done for them, but for the work in the future; to develop the website further and to help others who are facing similar situations that I once faced after being diagnosed. To make someone realise that they are not alone like I once felt.

On reflection I have also learnt that despite living with a neurological condition does not mean that I cannot accomplish everything that I dreamt of as a child.  The journey towards those dreams may look different  and may also take longer but they are still achievable.  This is summed up brilliantly by a quote that I came across on Twitter:

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Welcome all again.  It’s a bright, beautiful sunny morning outside, on the 21st April.  And time for a new post for the WEGO Health ’30 Days, 30 Posts’ Challenge.  The prompt for today is as follows:

Health Madlib Poem…Go to http://languageisavirus.com/cgi-bin/madlibs.pi and fill in the parts of the speech and the site will generate a poem for you.  Feel free to post the madlib or edit it to make it better…

I have to admit that I hadn’t a clue what a Madlib was, which was where Google came in very handy.  Apparently, Mad Libs is a word game frequently played at parties and is especially popular among children.  Mad Libs (from ad lib meaning a spontaneous improvisation) is a phrasal template word game where one player prompts another for a list of words to substitute for blanks in a story, usually with funny results.        Information taken from Wikipedia.

In this particular challenge, the website given in the prompt asked me to provide words such as nouns, verbs, adverbs and adjectives and then generated a poem using the words I provided.  The following in a mixture of my words and those of e.e cummings, based upon his poem entitled ‘somewhere i have never travelled, gladly beyond’.

 Here is my Health Madlib Poem:

alone i always fall, fall almost broken

any room, your lesion lies there invisible

in your most inner brain are things which seclude me,

or which i cannot see because they are too deep

 

your trivial look quickly will turn me

though i have looked at their lights

you feel suddenly dizzy  by dizzy myself as flashes brightly

(grasping tables, falling) her weakness obvious

 

or if your wish be to catch me, i and

my legs will stand very shakily, uncontrollably

as when the scene of this world spins

the vertigo increases intensely

 

nothing which we are to do in this circumstance can

the power of your intense movement; whose strength

compels me with the nausea of its disturbance,

legs buckling and crumbling with each tremor

 

(i do not understand what it is about you that causes)

and reacts; only something in me damaged

the stem of your brain is scarred than all others

falling, not even the crutch, has such fast reflexes

And here is the original e.e. cummings poem of ‘somewhere i have never travelled, gladly beyond’:

 

somewhere i have never travelled, gladly beyond

any experience, your eyes have their silence:

in your most frail gesture are things which enclose me,

or which i cannot touch because they are too near

 

your slightest look easily will unclose me

though i have closed myself as fingers,

you open always petal by petal myself as Spring opens

(touching skillfully, mysteriously) her first rose

 

or if your wish be to close me, i and

my life will shut very beautifully, suddenly,

as when the heart of this flower imagines

the snow carefully everywhere descending;

 

nothing which we are to perceive in this world equals

the power of your intense fragility: whose texture

compels me with the colour of its countries,

rendering death and forever with each breathing

 

(i do not know what it is about you that closes

and opens; only something in me understands

the voice of your eyes is deeper than all roses)

nobody, not even the rain, has such small hands

So, what do you all think?  Please leave a comment below, love to know your thoughts!  Have you created your own madlib poem, please share them, would love to read them.

Until Tomorrow…

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