my house made of straw

i LOVED the story of the wolf and the three little pigs when i was a child.

The stupid pig building his house of straw…imagine the insecurity…the pig should have been lying there waiting for a change in the wind, or a wet day never mind a wolf to blow his house down. the sill pig.

YET i find myself stuck in a very strange place in my world of ACCEPTANCE. My condition, chiari malformation, my brain problem has wounded me, seriously and permanently it seems now. Chiari is a rare neurological condition. And i feel when the doctors diagnose that it is tinged with the knowledge that you are not getting something RARE as in a collector’s item? NO you are getting something RARE as in medically quite uncharted, and unknown.

Then you get to see that you have REALLY drawn the SHORT straw when your Neurosurgeon, who in my case I love, says “i HATE your condition” as there is so little that can be done to change life with it.IMG_7455

i wouldn’t dream of depending on straws to protect me, to cover me, to shield me…and YET, my world is MADE manageable only by clutching straws…

My condition will most likely over time get even worse. I can ACCEPT parts of it- although not easily.

  • i still- irony- do HAVE my brain.
  • i HAVE and NEED a black comedic sense of humour.
  • my musical , creative side is as thorough, as extreme, as demanding as ever.
  • i can walk for a few minutes….YES in pain.paini
  • my PAIN is just tolerable.
  • i don’t think “why me?”
  • i think “there could be worse” – on my better days
  • my legs if they remain with the few steps i could cope with….

BUT i am very much EXISTING at this level. not LIVING. certainly not ENJOYING LIFE.To-Live-Is-The-Rarest-Thing

i am waiting.

and worse i am just about managing to wait

and i am like a drowning man holding on to straws…waiting until THIS or THAT…but not able to GRIP those straws …and not able to go further and ask “WHAT IF I LOSE GRIP OF THAT STRAW?”

I am hanging on to a few straws….for life….



gripping with all i have…. hanging onto the HOPE that:

  • my appeal for a wheelchair with assisted wheels which would enable me NOT to look cooler, better, but to MANAGE to travel the series of hills that is my home town. TWO YEARS of being at home, housebound, unable to use my wheelchair on anything more than flat streets – i.e shopping centre, i DO have a trolley but that trolley is MORE than enough for me- more than i currently feel, perhaps perfect for me in 20 years but not now. I ca and do use my wheelchair, but i CAN NOT go up my own town.  SO I AM HANGING ONTO THE HOPE THAT THE APPEAL WILL BE FAIR AND I WILL GET THE GADGET WHICH MY OT AND MYSELF HAVE TRIED.
  • A very kind friend drew this in the hope that the chair appears…


  • Another of the fallacies i am hanging onto like a child is they can fix my pain. i live in CONSTANT pain but variable levels of that all the time. Day and Night. I can medicate as i am, ruining kidneys, liver, bowel as i go due to combined side effects.  I Recently met anothe lovely guy – my pain management expert.
  • GRAB. HANG ON. I hear myself telling him all about the super wheels. And then he describbes a new level of “surgical procedure” we are going to try SOON. And in this case I did go into the realms of desperation. I hear my voice saying shakily ” And if this doesn’t work, is there MORE? Cos you are a STRAW i am clinging to, that we have OPTIONS to control my pain”…. his placatory YES there are other things we can try was enough for me on that day. In hindsight? That straw is barely floating with that answer…no promises. no definites… Should i be looking for more?IMG_7458
  • my neruopsychology and OT are part of my lifesavers. They are the people who keep in there…who look for what you now need…has your condition changed? how are you adjusting to this new version of YOURSELF? They are i guess the straws i reach for FIRST. They are in the front-line. The KNOW me. They see me most often.  They challenge me but the also support me. But they KNOW ALL the straws I am dipping in there… they ALSO know that they can’t keep me hanging to them, not cut the straws yet.

IMG_7456 They KNOW that my acceptance has still got BOUNDARIES.

That i have STRAWS am hanging onto and THEN i will live not exist

They also KNOW what can break me. “WHAT IF THIS IS IT?”

I am the little pig…just waiting for the rain…me and my WORLD depend on straws.IMG_7457



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