Voices from the Shadows

All around the world, even now as we speak children are taken from mothers and the gravely ill are sectioned in psychiatric wards. ME/CFS has a torrid history and the medical profession is left useless in its wake, relying then on the tried and true strategy of blaming this enigmatic illness on the patient.

We who suffer with this illness, become cynical and hardened by the constant fight. By the need every day to gather the willpower to choose to keep fighting this unwinnable battle, while on the sidelines the medical profession yells taunts and derision at us. Their inability to puzzle out our illness, makes them condescending and dismissive. They are stymied by  ME/CFS and rather than treating it as a common enemy, they turn on us.

Right now in Spain a very sick child has been taken from her very ill mother. Even though leading Spanish ME specialists have declared that the child has acute ME and should not attend school on days she is too weak. Even though a judge declared that challenges made by the government to remove guardianship from the mother (also sick with ME) was not in the child's best interests. Even then, the Spanish government has taken this child and put her in a psychiatric ward and refused the innocent mother access to her sick child.

In England a man visiting from Canada who was also very ill with ME has been sectioned in a UK hospital. And this is not just a foreign problem. It happens to Australians too. It has happened to two people I know. Likely more, because it is a shameful thing that people do not want to share.


There is an estimated two hundred thousand people in Australia with  ME/CFS.  Of those a likely forty thousand are house or bed bound, silently screaming for help

The film Voices from the Shadows is a documentary film created by family members of a severely ill ME patient. It speaks for those of us who are unheard. It is important viewing for everybody, but crucial viewing for anybody who loves someone with ME/CFS.

Voices from the Shadows Trailer from Josh on Vimeo.

A reviewer from the Chicago Sun Times has written a review almost as moving as the trailer. Scott Jordan Harris ironically is also a soldier in our war. He too has ME. It is worth a read A howl of desperation for those who cannot howl

Crazy Cat Lady

It was innate in me, the predetermination of my fate as a mother.  I was never one of those people that planned to be married and have a child by a certain age, but I always knew I would have children at some point.  So this last birthday, yesterday in fact, was particularly bleak.  Because now I have had to face the reality that I will not be a mother, that I will not nurture and raise my own child or any child. 

I am thirty-four, which again, has never bothered me.  Age didn’t really worry me, but looking at it refracted though the lense of illness, is different.  Each year is another nail in the coffin of motherhood.  And this year, it has been inescapably dark. 

Throw most anything at me, and I’ll keep getting up, keep fighting, but the realisation that I will never hold that role has near obliterated me.  So much so I have found it hard to even admit to myself out loud, for fear I might sink never to get up again.  It is not that I am without hope that I will ever get better, but at my age with the combining factors of Endometriosis and PCOS it would have been a battle anyway.  Then just recently I had this revelation,  I have always known that short of finding a brilliant partner to support me, that it would be impossible while I am sick to even consider mothering a child, but then I realised that there was a good chance, if current research is correct, that I could pass on this insidious beast to my child.  And there is no way I can gamble on that. Ironically the fierce protective mother in me won’t let me be one.

  

But I am a Ma to two fur babies.  And as much as I used to take the piss out of obsessive pet owners with their stupid pet clothing and accessories and toys, I’ve now become one.  I draw the line at clothing, but toys and furniture, I’m all for it, because without my two fur babies, this blow would be too much.

So my adoration for them has increased if that is even possible, and my heart sometimes feels like it might burst because it just cannot fit all that love in there.  In moments when things are at their worst, when I cannot move but cannot sleep, I put my ear to the bed and Tobey’s purr reverberates through my head and I listen to his sighing breathing and it puts me to sleep.  Then when I toss and turn, Cooper lifts his head off his front paws and chats to me, berating me until I lift the doona so he can crawl under and curl into a tight little ball against my chest literally protecting my heart.

They make me smile every day, and laugh and yell, and without them I would be terribly alone.  So in future when I hear someone talk about their pet as though it is their child, I will nod my head in understanding.  It is not so silly after all.  Maybe the crazy cat lady isn't so crazy.