Thought Picnic: On the politics of adversity and the expectations I refuse to respect

Exemplary beyond words

I was listening to a BBC Radio 4 programme last night titled No Triumph, No Tragedy presented by Peter White who as the Disability Affairs correspondent of the BBC was born blind.

He was interviewing Melanie Reid who in 2010 suffered a fall whilst horse riding and the injuries sustained turned her into a tetraplegic. There were so many things she touched on the subject of life-changing adversity that I could relate to, that I thought I might write something in relation to my experiences.

One particular phrase she used was, ‘The Politics of Disability’, which I understood to be a particular thinking and mind-set that appears to create a community of people with a common experience and agitates to maintain or set a standard for how people in that setting should identify, project, speak or advocate.

The pressures to conform

As a tetraplegic and her stubborn desire not be defined by that condition, she had come against some opposition from others in similar situations who expected her to more accepting of her situation and a more vocal advocate of rights, positions and policies to serve that community.

Whilst, I have had my share of adversity and none as serious as the principals I have heretofore written about, the concept of politics is even broader than that of disability. It covers such areas as the medical, the economic, the social, the cultural, the religious and the familial dimensions of the person, their community and their society.

When you consider race, sexuality, long-term conditions, survival from cancer, attendant chronic conditions and adversity, there has always been some perception and thinking one has had to prevent from encroaching into what is essentially one's own personal story which is not entirely unique.

Expectations I refuse to respect

Yet, I find that from all those apparent groupings that have their loosely agglomerated communities, there are expectations and demands. That I am black, I am expected to identify with a political slant without questioning else I am a sell-out. That my sexuality is a private and not a subject for public discussion, I am considered either lacking pride or courage for who I really am, whereas, that is just part of who I am and hardly the whole.

Other matters on the issue of disease and the management of it, we've had cancer which in some cases is both politics and an institution beyond which it could even become a kind of lifestyle. A resignation to fate whilst the fight continues to survive and meet certain life goals. Last week, I was literally bullied into signing a petition to keep the NHS public, especially when I mentioned I was a cancer survivor, I got a good earful.

Knowing where your loyalties lie

Yet, I owe my survival not to the UK NHS but to the Dutch healthcare services that acted promptly on noticing that I had a serious condition, where they are more interventionist than reticent. A chronic condition discovered for well over two years now in our NHS has had doctors do everything but go for dealing with it. I have been observed and sweet-talked in the notion that the real damage is probably a decade away when we could address the condition now and be done with it.

It is unsatisfactory and it does make you want to find a pressure group agitating for quick decisive action rather than what looks lackadaisical almost to the point of uncaring with the hope that we expire before we cost the NHS anything for our treatments.

Reviewing this situation allows me know where my loyalties lie, knowing those who really did something as opposed to systems that pay lip service to situations they never practically affect in a positive way. In other spheres too, you begin to know that your loyalties must be borne of profitable experiences of humanity rather than have your loyalties determined by default to what pigeonholes you have been allocated.

Know your story and stick to your life

On the matter of adversity, the counts are numerous and only a few people know to any extent what the experience was, the losses were many, yet hope lives and thrives in ways that celebrate the resilience of the human spirit.

There are reasons to identify and conform, but in the end, you have to have your own personal experience written as your own story in your voice and in your time, extricate yourself from being a statistic or a number, not a patient, not a victim, not a mishap or an unfortunate reportage, but a person with a name, with a life and life they are living their own way.

Politics has its place, but the stubborn will to be different is the best story that can be told of any life that has lived on this planet earth. For that, I commend Peter White and Melanie Reid for teaching me more about facing life, not as a triumph or a tragedy, but as life the best way you can.

Opinion: Tackling the Culture of Blacks Handling Disease

The taboos we must break

I found myself nodding in agreement to literally every line I read in this article published in The Body magazine – The Complete HIV/AIDS Resource – titled Breaking Through: HIV and African Americans.

If we removed HIV and replaced it with cancer, diabetes, hypertension, or misfortune, we would have subconsciously listed a sliding scale in terms in growing confidence to talk about how certain issues affect us.

Someone dying of the complications of HIV might only be able to accept that they are dying of cancer, the visible signs and sometimes along with diabetes means, we never attempt to ask more probing questions.

Our false stories

As I read the article, the writer informed that he had lost three relations, presumably African American to AIDS; two women, including his aunt and a man who insisted he was a heroin user when it was quite possible he was gay.

We have never been able to approach the reality of our diseases for the so many factors raised in that article. It is not just an African American thing; it is particularly African and probably broadly affects all non-Western cultures.

When I write blogs like this, I am wont to excerpting generous portions of the source material to make my points. However, I have decided we need to get the courage to begin to face the many issues that plague our communities as we suffer in silence, perpetuate the stigma and look at disease as the otherness that will never approach our steads.

We shock to numbness

We cannot deny that HIV/AIDS and cancer cuts a swathe through our communities like a wild forest fire that we treat as if it is insignificant, as our silence becomes a coping mechanism of convenience.

This means we fail to access health options and healthcare early enough for radical and timely intervention until it becomes an emergency exceeding effective medical treatment leaving us with just one option of palliative end-of-life care.

The story then becomes one of hospital visits, close family in shock at the apparently sudden deterioration in health of their relation as life slowly ebbs away no one the wiser about the truth until a nurse pulls one of the most affected relatives aside to say exactly what the diagnosis was. AIDS? Cancer? Usually not enemies scheming in the backyard, held at bay with Psalm 35.

There and then, the world collapses around every loved one and the questions start to flood the mind with prefixed inquisitive phrases of how long, how bad, how did, what can, how much – we have experienced this many times and yet we willingly hop on the vicious cycle of the culture of blacks handling disease badly.

The signs we ignore

We ignore the warning signs in the cause of the worry about the loss of our livelihood and the economic distress that accompanies a disease. Then visit our temples hoping and wishing for miracles with mountain-moving faith that had moves nothing more than the air that comes out of our mouths in fervent prayer, because we are in the mortal grip of fear; we rapidly approach an avoidable expiry date.

We listen to stories and conspiracies, we search for Shamanist cures in grottos that have defied the onslaught of civilisation and logic, imbibing awful concoctions too rotten for a recipe list and yet the temporary relief presages a catastrophic relapse before it is passed off in an obituary as a brief illness or a sudden death.

No fairy tale

These are the facts, Fela Anikulapo-Kuti, the “Nigerian multi-instrumentalist musician and composer, pioneer of Afrobeat music, human rights activist, and political maverick” died of Karposi’s sarcoma, and it is a form of skin cancer usually brought on by AIDS.

His brother, a prominent AIDS activist and former minister of Health could only talk about AIDS affecting his family after the man had died. Nelson Mandela’s son also died of AIDS, but we only learnt of that after the fact.

As a cancer survivor, I know how much I have revealed about my condition and the secrets that I still keep for the fears, the shame, the stigma and many other attendant issues that dog our cultural outlook to disease.

Yet, as the article states, and this I will excerpt, “Magic Johnson has not been cured by some medicine being kept from us.”

Ignoring our possibility

We can expect better medical outcomes if we talk, if we act or react immediately and seek professional advice when things are changing in our bodies that we cannot account for in our daily routine.

Karposi’s sarcoma as a result of HIV/AIDS complications was already treatable in the 1990s, and anti-retroviral (ARV) drugs manage HIV to the extent that people living with HIV can live very productive lives.

We cannot ignore our way round reality, nor can we bargain away disease with the false comfort of vows and the sudden laying on of hands; we need to accept first by understanding what we have* and that will inform the kinds of interventions that medicine or therapy can help us with, in a timely fashion.

[*This includes, HIV/AIDS, cancer, diabetes, hypertension, depression, mental illness, misfortune – tag anything you want to the list.]

Medicine is not evil and churches are not hospitals, but the beginning of dealing with the problem that plagues our community with the poison of silence is to read an article in a HIV/AIDS magazine about respected black women in the family dying of AIDS in today's America.

Finally, go for that test, it is about your life and keeping it.

Click on the link and read - The Body - Breaking Through: HIV and African Americans

Thought Picnic: In life, we will always differ

Of secrets deep inside

Following on the issue of acceptance and understanding of my parents and relations concerning things that affect and define me, I realise there is much we probably will never get to talk about.

Many decisions and allowances have become the story I have never fully told, yet, I have friends urging and compelling me to reveal more facets of my makeup.

Finding a new direction

Beyond that, there are elements of activism that I am not too conversant with, but I have experience of because of whom I am and what I have.

To some, these issues are lifestyle choices, but to those who live within that framework, if we could really make those choices we would have made completely different ones.

There is no reason to go against the grain to prove a point deliberately, we are not obstinate and stubborn people geared to offend, upset and embarrass anyone, we are just human.

We suffer in silence

However, elements of our humanity are still difficult to understand and accept; some of it comes with fear, with shame, with stigma, with discrimination and sometimes violence unwarranted.

Besides this, some of us bear in ourselves a death sentence, organisms seeking to sap away our life force and yet we refuse to give in – we are survivors, telling a tale mostly to ourselves that we will see another day, another year and more beyond that.

Both different and the same

We just want to get on with our lives and not have to face the unremitting scrutiny of people who want to define our lives by what they consider the norms to which we cannot adhere.

When we do sit down to talk about some difficult and hard truths, we might be different but no less than anyone else engaged in the pursuit of love, happiness, peace, joy and a life worthy of remembrance and positive impact in our communities.

Nigeria: A case for jail threats against those refusing vaccination

Protecting our shared community

I would hate to be in a society where vaccination is forced on people, but we need to understand the responsibility to be vaccinated if we are to participate healthily in our shared commonwealth, society and community.

The news is that 120 parents or guardians were arrested and threatened with jail terms if they continued to refuse to allow their wards be vaccinated. [Punch]

Polio or infantile paralysis, is an acute, viral, infectious disease spread from person to person, primarily via the faecal-oral route. [Wikipedia]

Herd immunity

It is preventable by immunisation or vaccination and recipients of this preventative measure block person-to-person transmission of wild poliovirus, thereby protecting both individual vaccine recipients and the wider community (so-called herd immunity).

The operative phrase here being herd immunity, the threshold in percentage terms a community population has to reach in vaccination numbers against preventable diseases to avoid an outbreak leading to a possible epidemic. [Wikipedia]

Source: Herd Immunity - Wikipedia

The chart above with regards to vaccinations against Diphtheria, Measles, Mumps, Pertussis (Whooping Cough), Polio, Rubella and Smallpox with the attendant modes of transmission implicitly confers a societal responsibility on everyone, first by not being a vector for transmission and avoiding that by being vaccinated.

With thresholds ranging from 80% of the population for Polio to 92% for Pertussis and Measles, it would be considered irresponsible for certain members of the public to shift the responsibility unto others by hoping the coverage of herd immunity when they interact with society assures their immunity if they have not yet been vaccinated.

Preventable means taking responsibility

More pertinently is the fact that in 2008, the WHO estimated that there were 1.5 million deaths amongst children under 5 due to preventable diseases. Preventable and avoidable possibly if those children had been vaccinated. [WHO]

Now, where there are no vaccines or a community has not had the opportunity to avail themselves of this life-saving activity, one’s sorrow and sympathy flows unabated as one also advocates for more vaccination drives to the unreached or deprived ends of the world.

Dread and death

However, where religious ignorance and rabble-rousing rhetoric of stupefying controversy as happened in Nigeria has bewitched the people into thinking the vaccination drive is to sterilise the population, then one wonders about the choices between needless childhood mortality or preserving maternal fertility creating a perpetual cycle of birth and death, joy and sorrow until indifference sets in.

That is not to say there is no cause for concern, vaccines are not perfect and as in the case of the Pfizer experiment in Northern Nigeria; what they did was unforgivable, the unethical conduct was reprehensible, and it set back the global vaccination drive that has left Nigeria as one of the only countries in the world with a polio problem, however, we cannot because of it stop the need to vaccinate and avoid preventable childhood deaths. [Wikipedia]

Just one and it spreads

Back to my premise for this blog, just because certain parents refused to take the MMR jab, in 2013, there was a measles outbreak in Wales, which affected 1,455 persons, 664 of those in Swansea and there was one reported death, in August 2013, there was a measles outbreak that found patient-zero in an evangelical mega-church in America.

The whole point I am trying to make is this, it is your prerogative not to get vaccinated, however, if you intend to share the same space as others, breathe the same air they breathe and interact with others as another social being, then that prerogative has to be subsumed to a greater good – you taking responsibility as much as others to be immunised or vaccinated and prevent unnecessary hardship, avoidable sorrow and needless deaths.

The choice is clear

It is in view of this that I support the jail threats made to the people arrested in Niger State of Nigeria, whilst it might be read as an encroachment on their rights, the wider responsibility is to society, with the desire to interact with the community comes a responsibility to help keep that community healthy and safe by attending to the smart obligation of being vaccinated.

Obviously, you can completely isolate yourself from civilisation, but then, hopefully you are too far away from any community to pose any risk at all, else, get vaccinated at the earliest opportunity.

Thought Picnic: The sentence of death in ourselves

Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us. II Cor 1:9-10 [NKJV]

Learning of something

With this in mind he made his way to the place where the first indication with be given of what his life might turn out to be. A salvation with amazing luck of being untouched but the foreboding of sudden misfortune of a life that will change forever.

As he was counselled, he expected no surprises, he almost knew what the result will be, though they were to run another battery of tests again to be sure that what they saw the first time was what it really was.

The nurse came in and gave the news, he was impassive, reflective and quiet, absorbing the news with the stoicism of what next, what next after this and get on with it.

Concern from someone

Without company or support, his lonely world had to grow to share with itself the gravity of happenstance, the nurse himself was moved to tears that the patient became comforter for the sorrow that was felt about him – then he intoned, “This might eventually kill me, but I will not go down without a fight.”

With that, pamphlets of information were gathered and shared, he was to feel anger, be in denial, be despondent, be regretful, feel hopeless, probably suicidal and cycle through every form of despair but through the cloud of this misfortune he felt the pamphlet was missing one thing, the thing that takes you on a journey of life when death is roaring at the door; hope.

Cistern of some hope

He did not know what the next day will bring, the week was further, the month had possibilities, but years were like a dream, something not to be dared in thought or by expectation, but 11 years on after learning, he yearns to keep stern that he might yet earn much beyond concern.

No, it has not been easy, with it has come great loss and privation but in that story told to many to sympathise, to empathise, to encourage and to embolden, they have gone on to do great things too because the sentence of death only hangs over the head of those who have stopped living, where hope abides, we trust that there will be another day, and another day that leads to a week, a month, a year, a decade, some gratitude and great thankfulness.

We are still here, and that is wonderful to behold.

Thought Picnic: The Couch Did Not Recline

In the beginning

My meeting with the clinical psychologist started slowly, she had some notes with her taken from previous discussions with other staff but now we had to elicit from the detail the particular, the critical and the general.

My tale which has a trigger in 2002 but brought catastrophic devastation to the world I once knew in the year 2009 with precipitous consequences that trail my survival like a comet in the night sky was once again engaging.

I do not present a demeanour that belies my battle weary existence as other issues loom with the urgency of an emergency which in the right hands can be resolved once they are fully understood.

A whale of a tale

We walked the timeline line of decline, disease, diagnosis, drugs, debt, deprivation, destitution, desperation, depression and death. The summation of disaster that had become the story of life and then the promise of progress and promotion held in the fragility of hopes dashed and rekindled for new change.

We did speak of death because it signalled an understanding of frailty and vulnerability made too palpable by the passing of my partner just 5 days after I left hospital, my voice broke for a moment but the tear ducts kept their waters.

Emergent and urgent

Critically, what we need is new accommodation, some sustenance and then a job, I need to tap into support systems with the help of my medical team and other ancillary staff – there are possibilities.

As the session drew to an end with a preliminary assessment that I did not present any of the classic mental health symptoms, we agreed that one issue that I need to address is one of anticipation, preparation and pre-emption of circumstances requiring urgent and emergency redress.

I guess I have live for the day for too long, I need to consider longer time-spans. That is much food for thought before a whole set of appointments and meetings next week.

Therapy is good and having professional help in that area is always useful.

Thought Picnic: I am Perfect for my Role

Knowing me well

It is beginning to sink in and I need to grab this and run with this like a man with a mission who just realised that his train is about the leave the platform doing everything I can to get on that train.

I have done so many things under my strength, by my ability because of my eligibility and my capability, a self-made man who has an amazing history, a depressing present and from a mere man’s perspective a very unclear future.

In the midst of this, I have come to the realisation that I am perfect for my role if I allow the call upon my life to be exhibited not in the boasts I can give about what I have done but by allowing certain truths that underpin the basis of my Christian faith to shine out of my imperfections.

My imperfections prepare me

O yes, I am an imperfect man, with unmatched tools and unworthy causes set out for a job that I am unqualified for, that has me weak in strength, stuttering in incoherence and lacking in all confidence but it is what makes me perfect for my role.

Why will the weak say I am strong? Why is it that it is those that become like children that have the greatest chance of entering heaven? Why is it that it is the foolish things of the world that have been chosen to confound the wise?

All because God does not want us to rely on our strengths, our abilities, our magnificence and the many things that allow us to boast about what we have been able to do such that God is grudgingly given the glory for where we have arrived at. Until we begin to realise that all things are for the excellency of the God’s purpose and power to be revealed through us that if we might be tempted to boast all we can boast of is in the Lord, we are still doing things under our strength.

The Act of Letting

Where we are not doing things under our strength, we accentuate our weaknesses using those as excuses not to be step forward and be counted because as men we are schooled to use heaven as a augmentation to what we have rather than let heaven’s grace radiate from within us in all our imperfections for men to see the power of God expressed in the weak such that God might be glorified in us.

I am perfect for my role, having lost everything, with chronic health issues, lots of experience brought to nothingness by perceived unviability, almost without a name and struggling with too many things to mention, else this will become an endless read – at that point where acceptance is the beginning of radical change – letting go and letting God – in the most clichéd of evangelical phrases to perfect His will in me.

The Power of Acceptance

I remember not so long ago as I navigated the Kubler-Ross Five Stages of Grief, only then the grief was dealing with disease, the moment I accepted I had cancer I was ready to look at the next stage of my life, winning the battle and putting it into remission – it happened and by medical assessment, my consultants thought the speed of my recovery was both marvellous and miraculous.

Now, the grief is catastrophe manifested in misfortune and I think I have reached the stage of acceptance where what now lays before me is a future that will stretch my imagination.

The path to realisation

I am no doubt a work in progress, ready for what is ahead of me by reason of what I could not have anticipated. The moment I began to realise that people are blessing me not so much because I am so liked but because they themselves are just amazingly and innately good anyhow, I have begun to get some perspective of the level of gratitude I should have for the too many wonderful things that have become the story of my sometimes ordinary and sometimes extraordinary life.

This story is just about to take off.

For those who might be so inclined to elicit why I have come to this realisation, I have been listening to Pastor Steven Furtick of Elevation Church who preached a number of sermons titled – Living a Better Story – there might be some truth in it for you too.

Useful links

These links point directly to the MP3 files

Living A Better Story, 4 Reasons Our Stories Struggle (Part 1)

Living A Better Story, Suspension of Disbelief (Part 2)

Living A Better Story, Cancel the Audition (Part 3)

Living A Better Story, Turning Point (Part 4)

The Elevation Church HomePage.

The Elevation Church Podcast portal for audio, video and HD video archived podcasts, all free to access.

Thought Picnic: A total loss looms for restart

The threads for this yarn

When this story gets told in some book where all the threads that reach the present are twined into a rope with some pulling power, you can only wonder what it would be used to moor to the docks of history.

Many narratives exist where it all seemed to be at a dead-end, hope appeared to be lost and there was nothing in the horizon but the darkest clouds of storms that have never once before been predicted.

Somewhere in the past the seeds were sown that have become wild orchards of poisonous fruit harvested to ills that do not take to medication, the cramps being more persistent, the pain without respite and end unimaginable approaches at speed too high to manage as one.

The losses accumulate

A day so close looms with the risk of losing everything but life and a slither of hope that the rebuilding from scratch would be merciful, swift and tolerable.

Whether one likes it or not, the survival of something as life threatening as cancer when it was a battle that could be lost in a month to almost two years after suddenly seems as one of the little battles raging to claim ones sanity and many other things.

There are basically no solutions that appear to be in sight, sometimes you just want to pack a bag and walk away from life leaving behind memories of the many lives of cat lost with probably just one or two lives left.

The house that Jack lost

Looking around you remember the old nursery rhyme; “This is the house that Jack built” with everything you can see of what is in the house that Jack built and then because of so many things, situations, circumstances, hardships and probably a run of not so good fortune, you wonder if the next day will end with; “This is the house that Jack lost.”

For all the external calm, the turmoil is great and tumultuous; sometimes you happen to live and at other times life just happens to you.

Thought Picnic: My hopes coaching my reality

Wanting to board

Days come and go as a recent past seems to hang on to my present with a grasp that beclouds the future offering a story that I feel is already worn and probably excites no more of the context it once had over a year ago.

My options appear varied but the direction is fuzzy, it is like I got to a station and the train I was about to board just sped through without stopping and there is no inkling when the next would arrive.

The strings on my violin have been strained out of tune, somehow the chap who was diagnosed with cancer just over 19 months ago, who more or else enjoyed 5 months of chemotherapy and returned to work within 6 weeks of that appears to be at a loss.

Laurels looking tarnished

My experience could stand me in good stead but it does not seem to be enough, it appears one has been left behind with the stark reality of having to recoup, realign, rearrange, rethink, refocus and probably restart.

A fearful crossroad looms where divestment of a life of acquisitions might well be the lightened burden one needs to consider however uncomfortable it might be.

I call it the long tail of disease, it does not really stop when you appear to be well enough to reengage, the residual effects continue long after one has been through the darkest recesses of life when all hope is so distant it takes the love of many and some amazingly daring faith to come through it all.

Getting beyond around

At a point where I seem to be losing my religion and running out of ideas of maintaining relevance without going back to the fundamentals you really hope rock-bottom provides a bounce of sorts and a plateau that is much higher that the depths and travails that encircle making your heart skip multiple beats as you draw deep breaths contemplating what is ahead.

I am continually asking questions whilst I am working to appreciate what change is required like writer’s block this is looking like a career block the jobs out there all just seem to have one hurdle more, one requirement more, one barrier more, one consequence more, it all appears to add up to something beyond reach.

I dare to think I have not really reached that stage but what I have left is really my hopes coaching my reality; it is needs to be exercised to the point where all my capabilities are resolutely with much to spare beyond my realities.