Saturday, 29 October 2011

Keep Going Forward, However Slowly

Sometimes, we cannot avoid standing face to face with ourselves. Seeing all that we are and seeing all within us that we cannot celebrate.

Barriers are built strong and high. Feelings are strangled or rationalised to death. Perhaps those barriers were necessary in the past, to protect us from some grim realities we could not safely confront. Perhaps they solidify to the point of lingering much longer than is healthy for us.

Yet, feelings and emotions are colossal forces and refuse to be cast aside completely. They might not enjoy the immediate attention they deserve but they will steadfastly hang around, waiting for their time to scream louder than they originally might have.

When we look within ourselves, we wonder how much of who we are was decided long ago. How much change we can effect. How far removed from the past we can become. How many of the same mistakes we are destined to continue making.

Our backs might feel bent by our burdens. Our memories filled with those we have hurt, those who hurt us and those who touched our lives but are now no longer part of it.

Life might seem to continue to deal us bad cards. Reminding ourselves that there are always others in a worse situation and of the blessings in our lives might sometimes not do the trick. Compassion and gratitude might not always win through.

Ultimately, we must discard any attachment to the notion of fairness. There will never be any solace possible in clinging on to such a concept.

We cannot get back what is lost. We cannot undo the hurt we caused. We cannot travel back in time and alter the past. We are a melting pot of our experiences and our decisions. The dice have been rolled.

The future might be full of fear. The past full of regrets. The will to carry on might be weak. The outlook may seem bleak.

And yet, the path only goes in one direction.

We must keep going forward, however slowly.

Friday, 7 October 2011

From Here ... To Where?

I write this with a growing sense of dejection, with a vastly reduced sense of hope and with an anger I cannot deny.

Those are all my personal feelings and I take complete ownership of them. They are not positive or healthy but they exist.

However, I write this entry on behalf of others rather than myself.

The Whittemore Peterson Institute existed as a beacon of hope for those with an illness where hope and progress had been in short supply. Whether it was foolish to invest such hope in an institution is an argument for another time perhaps. The point is, the WPI represented something tantalisingly appealing for those of us who felt we were not being taken seriously by the medical community.

The events of the past week or so have been extensively documented elsewhere so I will not cover that ground again in this post. What I will say is that I have observed a complete lack of compassion or engagement from the WPI towards a patient community who are desperately sick and who have probably sacrificed much in terms of personal donations and the work required to advocate on the WPI's behalf.

As the week unfolded, I tried to centre myself and put the emotion to one side. This was not easy but I managed to keep quiet about what I was observing.

Other than the sense that the WPI did not value its supporters, I was struck by the reality that they were abysmally lacking in any sort of public relations or customer service expertise. The communications coming from them were either sporadic, irrelevant or downright unprofessional.

Today, Annette Whittemore was supposedly holding a Question & Answer session via Facebook that would also address the questions/concerns that had been emailed to them (I had emailed questions in advance of this Q & A session being announced). What followed was something I can only class as a debacle from start to finish.

Pertinent questions from people who were making their health worse by taking the time and effort to be on Facebook and type out their concerns were ignored. No planning had taken place on how to structure answers or group questions into categories. In fact, it was a poorly thought out exercise that only served to make the Institute look even more inept and insular.

Instead of questions being answered, we were continually threatened with posts being removed if they contravened the Institute's 'social media policy' (whatever that might be) and were treated to the WPI's office manager telling us they were hurt by some of the comments. Forgive my lack of a bleeding heart for your hurt feelings Kellen - I place much more importance on the feelings, and poor health, of those who are now left with unanswered questions and a lack of hope for the future.

The upshot seems to be that the Vivint funds and personal donations were made to the WPI and will remain with the WPI. I am no lawyer so I cannot comment on how that stands up legally.

What seems an altogether different prospect for potential legal action is the VipDx testing that many patients paid a considerable sum of money to have. Annette Whittemore stated more than once that the results of the test had been 'clinically validated'. In light of recent events, I feel quite sure a lawyer could have a field day with this.

In the interests of full disclosure, I am a patient who has donated sums of money to the WPI and I have also invested significant amounts of my rather limited energy to support them via advocacy and voting contests. I am therefore feeling some personal antagonism in relation to this whole mess.

However, my anger is mainly on behalf of those who are much more sick than I am. Those who do not have any quality of life. Those who are too sick to talk or sit up in bed. I suspect a large proportion of those who paid for tests fall into that category as such patients will want to grasp any glimmer of hope for improved health.

A divorce is usually messy and we are often forced to take sides. I am not in possession of all the facts and cannot really comment on who is to blame for us being where we are now. What I can comment on though is how I feel in my gut.

My gut tells me that Dr Mikovits has a passionate concern for the future of ALL patients with M.E. - my gut tells me the WPI do not hold the same passion or ethos. I am deliberately putting the emphasis on ALL - I am sure I do not need to spell that out further. I do not feel valued, respected or important to the organisation I donated towards and advocated for. I therefore cannot justify supporting them in the future, regardless of any promises they make about treatment options.

None of which brings me any further forward in answering the question posed in the title of this entry - From Here ... To Where?

Saturday, 1 October 2011

What Can We Ask Of Others?

A friend on Facebook posted this poem today. Often, people post poems or affirmations and they strike me as too sentimental, too Pollyanna-ish or, in some other way, they simply don't 'speak' to my soul. This one was different though and it had a powerful impact.

I'm guessing, without doing any research, that it was written in response to the death of a loved one. However, I was immediately struck by how it applied to chronic illness and to what I have previously written about grief and acceptance.

I truly wish I had known these words when things were really bad for me. When I couldn't get out of bed for months on end and when I couldn't articulate what I needed from others.

Perhaps those who are still facing those struggles will find a use for this poem and can use it to let others know what they really need. Or, perhaps it will simply be a source of personal comfort for them. Either way, it feels worth sharing.

Please Be Gentle

Please be gentle with me for I am grieving.

The sea I swim in is a lonely one

and the shore seems miles away.

Waves of despair numb my soul

as I struggle through each day.

My heart is heavy with sorrow.

I want to shout and scream

and repeatedly ask “why.”

At time, my grief overwhelms me

and I weep bitterly,

so great is my loss.

Please don’t turn away

Or tell me to move on with my life.

I must embrace my pain

before I can begin to heal.

Companion me through tears

And sit with me in loving silence.

Honor where I am in my journey

Not where you think I should be.

Listen patiently to my story.

I may need to tell it over and over again.

It’s how I begin to grasp the enormity of my loss.

Nurture me through weeks and months ahead.

Forgive me when I seem distant and inconsolable.

A small flame still burns within my heart

And shared memories may trigger

both laughter and tears.

I need your support and understanding.

There is no right or wrong way to grieve.

I must find my own path.

Please, will you walk beside me?

By Jill B. Englar