My Christmas Wish

My niece Ly, Kairit's sister, sent me this poem today:

May all beings have happiness
and the causes of happiness.

May all beings have no suffering
nor the causes of suffering.

May all beings dwell in supreme bliss
free from all sorrow and suffering.

And may all being rest in great equanimity
free from all attachment, addiction, indifference and aversion.

And may all beings wake up
to recognize their true self-nature.

An emptying glass...

There have been no words for a long time.

The lack of information is not unlike the lack of treatment and no cure when one is diagnosed with ALS. You might as well disappear into a black hole. Research has yielded some genetic markers that may one day lead to a cure but Kairit's glass is now less full. It will be too late for her. 

There is no good news these days. Kairit spends her days in bed and requires help to sit up. She is dependent on her mother and her boyfriend, Anto. Despite their blowup a few months ago, Anto has hung in and has been supportive. It has not been easy.

Kairit is in a very angry stage as she realizes that she is not going to improve. Her muscles continue to deteriorate and her mood darkens each day. There is no doctor, no treatment, no hope of getting better. Whatever is killing the motor neurons in her body is also killing Kairit's spirit.  The family feels a sense of frustration and the glass that was is now almost empty. Kairit insists on staying home for as long as possible. Without Anto, this would already be impossible as he is the only one strong enough to carry her to the WC and the shower. The desire of the patient can cause stress on everybody.  But love conquers some of the difficulties.

My half-sister, Aino, is also not well. She will soon undergo tests for severe stomach pain that has worsened over the years. Estonia's health care system needs an overhaul as well. It takes too long to see a doctor...too long to get tests...too long to get results....too long....while patients suffer and people die.

I am not in a particularly good mood. I try not to let the problems of loved ones so far away and so much out of my control overtake my optimistic self, but the holiday season of 2010 is not cheerful. What we need is a miracle.