A Life Hidden - Blog posts by Naomi Whittingham

Tomorrow it's ten years since Emily Collingridge died and in May it's five years since the death of Merryn Crofts.

In Memory of My Friends

Quotes:

Emily and Merryn had spirits that shone through unimaginable pain. Even as their bodies failed and survival seemed unlikely, they never stopped hoping. The hospice team that cared for Merryn in her final months said that they had never witnessed such suffering. Emily, too, experienced a level of illness that confounded those treating her. And yet they both continued to believe that life was worth living. Right till the end, they gave something special to all around them.

...

Today I honour the memory of Emily and Merryn. I give thanks for all they brought to the world as a whole and to me personally. And I count the precious years that they and their families have lost.

They will never be forgotten.

 

From the always wise and thoughtful Naomi Whittingham:

Reclaiming the Narrative: Finding the Real Me

For me, the creation of fundamental mistrust of my own body and mind would have had far-reaching consequences at any age. But for it to have begun when I was still a child increased the impact dramatically. The repercussions have been more profound than I could begin to convey in a short blog post. But one day, maybe, I will share more.

What I can say is that, bit by bit, I am now starting to find the real me. A me that I have never had the opportunity to know before. A me that was, for so long, lost in other people’s versions of who I am.

In revisiting some of the darkest times of my life, I have been surprised. Buried beneath what I thought was failure, I have instead found a courage that astonishes the adult me. I’ve found a girl who endured the truly unendurable; who clung to life, even when it was the hardest thing she could have done. The very antithesis of giving up.

It turns out that nearly everything I thought I knew about myself was wrong, or at the very least badly distorted. Finally, after a lifetime of being lost in other people’s stories about me, I am hearing the words of truth that reside in my own heart. I am reclaiming the narrative of my life.

 

There are some lovely comments in this thread. Thank you everyone.

 

Agreed

 

I still have my records of conversations with Emily's mum at the time who reached out to our support network, desperate to secure specialist advice and help.

Emily and her family were failed.
Merryn likewise.
Also now Maeve O'Neil.....

I too have a 'sense of failure' as we are worse off now than when we (East Anglian Group's) came together as a collective voice.
This week another Local group has has to close down it's charity activity in Solihull.

Likewise Colchester MESH group who we aligned with and submitted to NICE with.
All I feel we can do is honor their memory and keep on trucking on....

 

It's an age related thing ... RIP Robert Crumb!

 

'Buried beneath what I thought was failure, I have instead found a courage that astonishes the adult me.'

I have been always been astonished by the clarity and wisdom of Naomi's writing and I think it's always been clear that the person behind the words is remarkably strong, intelligent, capable and resilient.

@Naomi10 I am so glad you are able to recognise, or at least begin to recognise, your own incredible strength and courage.

 

That’s such a lovely comment. Thank you x

 

Another great post from Naomi Whittingham. I truly admire her intellect and pen.

Why the pandemic isn't over for me

Individual reasons for ongoing covid caution vary. For the immunosuppressed, especially those who have been unable to mount an immune response to the vaccine, covid remains a serious risk to life. A wider group includes people like me who have the ability to fight the virus, but whose underlying condition is vulnerable to its impact.

What follows are my own personal reasons for continuing to actively avoid covid. I share them as an example of why, for so many of us, the pandemic isn’t over.

...

A major pandemic was always going to present huge challenges to my life, and yet the great paradox of covid shielding has been that an ostensibly more restricted existence has offered significant benefits to my health. As a result of largely avoiding viruses for four years, I now have a level of functioning that I couldn’t have imagined at the start of the pandemic.

...

Despite having had profound health problems since childhood, I am not under the care of a consultant and receive no medical support whatsoever for my condition. Were I to suffer a serious relapse, this wouldn’t change: there would be nothing available to me by way of treatment, symptomatic relief, or even basic support and guidance. Were I to require hospital treatment, I know that I would almost certainly be discharged in a far worse state than I went in, so damaging is the hospital environment to me. For this reason alone, I will always err on the side of caution with regard to my health.

 

@Naomi10 thank you for this beautiful thoughtful piece.

For me I will share this with those who may not hear it from me.

I have tried with very limited success to convey that when you sicken further as a person with an ME diagnosis already, you are on your own. There is nothing.

If you are already severely enough affected by a chronic illness or other impairment, not to be a part of the workforce, then there is little incentive to invest time and material resources in your health and welfare. All of us in this bracket experience this in word and deed from those we require assistance from. But from the beginning of the pandemic this political position was made explicit. Put into writing and directives not to care for those who become seriously ill with COVID-19, people who were as disabled people already registered as in need of a few hours of care per week.

Eugenics had gradually receded from public view in the previous decades but lo and behold. Out it sprang fully formed as bold and brash as it ever was. With such head turning rapidity it rose up from its accustomed zone of occupancy. Spread across the surface of everything. No longer pulsing and pulling just below the surface. A magnetic pull upon every aspect of “healthcare” and everything else, it now announces itself, here as it always was, but now they acknowledge its presence with gratitude. A powerful ideal a foundational ideal an ideology to rely upon once again. In our modern digital health systems it had hung on in RAM, no reach for something filed away.

A murderous horror not new not news to disabled people. It hurt nonetheless for its old age. A brutal blow. A rupture. To experience our disposability, so cheerfully espoused and expounded by our most well known and powerful public figures. On news broadcasts clearly not meant for us. To have such ideas, ideal’s, the foundational ideology used as something solid and reliable. Something to hold onto in this time of fear and uncertainty. Self-reassurance by the as yet non-disabled people or don’t yet require care-‘high functioning’-disabled people, an assurance that they are not in the firing line, because we are. That’s of course an obvious and self-serving falsehood, proposed by those in a position to know well the contradictory facts of the matter.

‘Healthy people’ have underlying conditions too, disabled people are workers too. Workers have disabilities too. Non-disabled and workers die from deadly viruses. Because of the virus and other people’s exploitation of their bodies. They exist on the front lines and they are damaged and disabled and killed by the people who put them there. Placed by careless employers in the danger zone of our deadly virus ridden world, offered none of the life saving protections at their employers disposal. Government leaving the choice to employers discretion. Profits are paramount, life saving measures are almost nowhere.

I wish sometimes that I could not know this terrible truth. The expendability of all of society’s living beings for someone somewheres numbers sheet and assurance of safety and luxury.

But at this time a little knowledge is the only protection we have. We will of course see things differently to people so far surviving and thriving. Even with most of us in precarious circumstances, some of us are closer to the edge than others. As you so beautifully express in this extract:

Despite having had profound health problems since childhood, I am not under the care of a consultant and receive no medical support whatsoever for my condition. Were I to suffer a serious relapse, this wouldn’t change: there would be nothing available to me by way of treatment, symptomatic relief, or even basic support and guidance. Were I to require hospital treatment, I know that I would almost certainly be discharged in a far worse state than I went in, so damaging is the hospital environment to me. For this reason alone, I will always err on the side of caution with regard to my health.

Because she’s worth it.