A Call For Help

Maria's Story - Click for YouTube vid

We are getting close to Christmas.  A time when many of us spend a lot of money on luxuries.  I am writing this post to ask that you consider directly helping someone in need of something more basic - a home. 

Maria is a Facebook friend who has been dreadfully ill.  I know from my own illness how devastating many of her symptoms can be.  One of the differences between myself and Maria though is that I am lucky enough to live in a warm and safe apartment that is not making my health worse.  You can hear from Maria's video (link at beginning of post), and read from her note below, that she is not so lucky.

It takes great courage to ask for help.  As Maria has said on Facebook: "I am so ashamed to be doing this as everyone I know is just as strapped financially as I am. But I am desperate and maybe this will fall into the hands of someone who is able to help so I am swallowing my pride and posting."


I have counted by blessings and donated to Maria's cause and I hope you will consider doing the same.  I sincerely thank you for doing so.

Barry

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Link To Donate

Maria's appeal:

clean safe housing critically needed for wheelchair/bed bound young lady

I desperately need safe housing where I can continue my fight against late stage neurological Lyme disease. I am 99 percent bedridden and I live in a very old trailer that is filled with mold and mildew. The bathroom wall is turning to mulch and the floor rotted through to the hall closet. I cannot afford to use the central heat as the unit is antiquated and costs half of my monthly income to run. I have no insulation and I can see the wind blow in the kitchen behind the stove with the doors shut. I get birds inside with the doors closed as well. The electric sockets on one side of the trailer get hot enough to burn when you use them or run the washing machine. I am in a wheelchair and can not fit it in the the bedrooms or the bathroom and I have no wheelchair ramp so I have to scoot on the floor to get out the front door and down the steps.
I have been dreaming of what it would be like to be in a clean house or apartment but I live solely on disability which is less than $700 dollars a month. My hope is that someone will be able and willing to help me with this dream so that I can get well and pay it forward to others in hazardous situations.

Shame

Decaying as I am
Need not some promised land
I know that I am failing
Acceptance was their plan

No silence in the sea
Nothing tranquil awaits me
Useless and used up
Too much using to do

I have chosen everything
This is what makes it so bad
No matter what the action
Situation was created by me

My life is different
These gray streets will only get me down
They will never fool me
Integrate me as their clown

(JJ72 - Improv)

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.

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?

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

My Story - Published at Becoming Visible 4 ME

I was honoured to be asked to tell my story for publication on the Becoming Visible 4 ME website. This has 'gone live' today and you can find the article HERE.

After some deliberation, I decided to tell my story from a personal point of view rather than by focusing upon a male perspective of chronic illness. Mine is the first story published on the site by a male but I wanted to try to demonstrate that we are just the same as women when it comes to dealing with such massive life changes. The emotional aspects, rather than the physical ones, have primarily been the focus of my blogging and I wanted to stay true to that.

My story was written prior to moving to my new apartment so it is already somewhat out of date. However, it does capture that post-acceptance period of my life where I finally moved forward and decided I must carve out a life alongside my condition.

The site is the brainchild of Dominique, whom many of you may know from the ME online community. The aim of the site is to tell people's stories, one at a time (monthly) in the hope that the stories are shared and a wider knowledge of what living with ME is like can be provided. Dominique is a formidable woman who has herself battled serious illness and who continues to be a driving force within the community with her website and various other projects. I am deeply grateful to now be able to also call her a friend. Please share the great work she is doing by posting the link on Facebook etc.

Take care,
Barry

Gratitude

Wow - such a long time since I have written here.

I shall get to the gratitude part soon, promise. Firstly, just a quick update on my living arrangements and my general level of health.

Last Thursday saw me move out of the house I shared with my ex-girlfriend and into my own little apartment. Healthwise, I am doing surprisingly good since the move - which leads on nicely to the main subject of this post... gratitude!

I was struck today by a feeling of how much I have to be grateful for.

The house move is complete and I am in an apartment I adore. It is such a pleasant place to live, to convalesce and to reflect. Sunlight streams in through the massive Georgian windows, the character and age of the property makes for very satisfying aesthetics. It is quiet, for the most part. Birdsong is the most prevalent sound - so all rather pleasing on the ears.

Today I managed another short walk in the grounds and ventured a little deeper into the undergrowth, leading to the canal. I ate wild berries from the bush and I marvelled at how an area left untended by humans blossoms into something most skilled gardeners would struggle to match. An abundance of supposedly endangered bees were sharing in my appreciation of all the wild flowers that were around.

Sure, the first few nights of living here were strange. I felt very isolated - especially as I had no internet connection. I missed my ex-girlfriend, I missed my cats, I reflected on a 7-year chapter of my life closing. Moving was right for me though. It was right for many reasons. My quality of life is already infinitely better due to having the whole property on the same level. My ability to feel like I can move forward and begin a new chapter in my life has increased too. My desire to be as independent as I can be alongside having M.E. is being tested and satisfied too.

The past few days have been filled with a sense of how lucky I am. My mother has been conscious of me being a little 'needy' during the adjustment phase and has been ringing regularly to chat and reassure me. My postman has been delivering a constant supply of 'welcome' cards and postcards from kind-hearted friends. I have been managing to dawdle around the apartment doing what needs done, slowly but surely. Everything has been positive and has reminded me of the connections, both old and new, I have made with people.

My ex-girlfriend has dropped in since the move. We were able to chat as friends, effortlessly. Of course, I am sad that the relationship is over but I had already done the grieving part of that prior to the move. Now comes the acceptance and the joy in knowing we will always be friends and that we can happily spend time together.

And today, I received a visit from an old friend. I surprised myself by being able to engage in conversation for 4 hours. We put the world to rights, shared memories and laughs and had tea and cream cakes.

It was wonderful to be able to catch up with her but it also gave me a sense of confidence in the future. That I can carve out a bit of living amongst being sick. I have been very cautious with my health since I got ill, scared to trigger any flare-ups for full-blown crashes.

Now, I think it's time to cast off that caution and replace it with a more balanced approach. To be sensible and careful but to make sure that my life also includes a connection to the outside world. I have felt trapped in a bedroom for the past year or so, partly due to my own choices, and it's time to give more focus to the freedom I can allow myself. I may never be the person I was before M.E. entered my life but I am okay with that. I can live with the uncertainty and the lack of control I have over the outcome.

Much to be grateful for :)