No Hope

At a moment in time when Isabelle Allende was sitting by her 28 year old daughter, Paula, who was in a coma from porphyria she wrote ‘Now I am in a blind alley with all doors closed to hope, and I don’t know how to handle so much fear’. I feel so connected to these words as I experience deep sadness and fear living with Karen and MS. Karen is my soul mate, best friend, mother of my children and the love of my life. Every day MS is taking a little more of her away from me. Walking one step is now a difficult and painful manoeuvre and her body is in pain in many places. Sometimes she cries out in the night as sharp pains shoot through her body. She constantly has pins and needles all over her body and often has one foot burning hot while the other is ice cold. If I look back I see that each month that passes she has got progressively worse. In the moment it is heart rending to watch her struggle with no ability to do anything to help. The future looks bleak. The specialists look on with their serious face and tell us the best outcome may happen and Karen will not decline too fast. She is declining fast and there appears no hope its tortuous path will be curtailed. It is certain she will get worse with many of the outcomes too horrible to contemplate.

How can I handle so much fear and sadness? For once in my life I don’t know the answer to a hard question. The rational and creative gifts I have been given have no solutions. Attempts to live in the moment, keep positive, build on what is good and to be active give temporary relief but the sadness and fear soon return. They visit more often and for longer now and turn their screw deeper each time. It is difficult for friends to know how to help. When we meet they say how well I look with my outdoor tan and the smile I paste on the outside. Few see the pain and sorrow inside. I can start a day full of wonder at new flowers on the scene, the scent of a new season or admiring the sun rise with the busy birds on the way with their day. Then all my strength is sapped as I watch tears, pain and the tortuous destruction of the person I love most in the world take place before me. I hold her in my arms, stay by her side and seek a new distraction to find some joy we can share in some way. We recycle our useless statements such as ‘it is not fair’, ‘why me’ and ‘this is just so cruel’ and often cry as we pass through another day without hope.

‘Now I am in a blind alley with all doors closed to hope, and I don’t know how to handle so much fear’. Isabelle Allende wrote the story of her life to Paula in the hope one day her daugher would read it. Her writing is moving, rich in love, honest and although hard for me to read has given me some strength to keep going. Paula never recovered from her coma and I don’t know if Isabelle has yet recovered from her grieving. I will read The Sum of Our Days to see what she says but know the scars of living without hope and in fear will never perfectly heal. Today I am sad inside and full of fear of what is to come.