Wednesday, 26 November 2014

Groaning, Talking, Frustrating

Her groans are an attempt to talk but she does not speak. It has been said that Steven Hawking's brain works at 200% while his body lost 100% to ALS. Conversely Miranda may be fitter than a couch potato, with the TV always on to stimulate her senses. With only half a brain much of the operating software for her body functions is impaired, despite a daily rigorous physiotherapy. She even seems to lack linguistic memory and we have no idea which part of her brain is recoverable, if at all. Her associates once called her a live wire. Can you imagine how frustrating a dynamo, possessing an active mind and a highly energetic life, staring blankly into space for much of the day? The stage of whether she speaks or not is crucial. Even a yes-no response would be encouraging. If not she would still be in vegetative state. That means I'm still responsible to decide for her life. Dreadful.
What can one take away from such life-changing debilitating experience? We are born into the world with nothing but our tiny physical bodies. As we grew we also deteriorate to our deaths, some of us making bigger dents in society than others. This illness is an affront to our mindless accumulation of wealth, fame or assets. I knew that but then only in theory - Miranda practiced it. The lives she touched and relationships remained from so many who came to wish her well and others who think of her recovery.

Thursday Nov 27: Something to be thankful for - she's starting to swallow more. Pray that she takes enough to have her meals without the feeding tube. Then she can exercise her gums.

Friday Dec 5 8 am: We have a problem. Due to the surgeon's oversight a hole was made in her gut to remove waste when she first went into coma. Now the colostomy bags were changed so often that bleeding sores have multiplied around the stoma. But it was a blessing in disguise for the last 3 years. Just have to manage it until she recovers her consciousness to request for toilet breaks. 

Wednesday Dec17 5 pm: Last 2 weeks of dealing with waste management. Now to encourage her to make eye contact and to respond to touch. She still cannot turn her head to focus on visitors. 

Christmas Eve 9 am: Spasms and epileptic fits - is this bad or a good sign that the brain is trying to restore? Seeing her bravely going through it can bring tears. Back on the nerve tablets. May the blue Christmas be cheery. And the New Year better.

Saturday Jan 10: Ever since the new year she is struggling to sense the surroundings, crying out at night. But still vegetative, she is not able to eyeball anyone around. 

Friday Jan 16 Noon: Pray that she continues to improve internally although she appears to be inert externally. That she can begin to sense the right side of her head. But I think she's enjoying her exercises.

Tuesday Jan 20 1 pm: So yesterday I decided to introduce the dogs to her, whom she loves like her children. She regarded each one in turn, but the attention span was brief, both ways.

Saturday Jan 24 1 pm: Sleeping by day and groaning by night, what is she saying? But at least she groans. She communicates by her eyes, so I believe that visitors nowadays will connect also, if you look straight at her.

<End of Post>  Next: Steady State