My siblings needed help to live not help to die!

I lost my brother, Vincent, and sister, Lucy, to dystrophic epidermolysis bullosa a cruel disease which they were both born with. My siblings lived to young adulthood but the condition they had affected every part of their life and became more severe with every passing year of their short lives. 

In their last years which were mainly spent in bed because they were very weak and in pain I watched them fight and never give up, they wanted to live past the short sentence this condition had handed to them. Many people might think that if that was them they’d rather be dead – what would be the point of continuing living in that way? You can’t do things anymore you have no quality of life you are a burden and of no use to anyone . . .  My siblings lived every single day of their lives in the best way they could and they made such a difference to me and to the world around them.

My sister was a journalist for The Guardian newspaper and lived in London. She was the strongest and most amazing woman I will ever know. She spoke at conferences and really impacted people and she still does today through all those who remember her. Her obituary in The Guardian gives an indication of how many lives she touched. My brother was my hero and best friend, through his pain he gained great wisdom. He understood life and used his experiences to help others in such a selfless manner. 

Both my brother and sister would be sickened that in this country we are now looking at the threat of Assisted Suicide which is saying to people like them that your life has no value. It’s encouraging us to think of the elderly, sick and disabled in terms of cost to society and the burden they are to others. Have we learned nothing from the horrors of the past as well as what is happening in other countries where this has been legalised? 

What is needed in our country is compassion and better care for the sick and terminally ill. This might not be an easy task but one we all need to embrace as none of us are getting out of this world alive so let us put funding into palliative care and cherish life to its natural end. 

I held my brother and sister when they died I felt my sister’s last breath on my cheek, it was an honour to be with them. Had they been tempted to end their lives prematurely we would have lost so much – hard and painful though the final months were for all of us I can confidently say: Life is precious, every last fragile minute of it, and worth fighting for.

Sally