Monday, 13 January 2014

Siobhan Is Dead

Siobhan Rock-Zych died yesterday; a part of me died with her. Siobhan (for those of you not in the Gaelic know, you say it "Shivaun") was a beautiful young woman who leaves behind three wonderful children, aged 2, 4 and 19; a terrific husband, Tom; and an amazingly supportive, kind and loving family. Her life was stolen from her by ALS, stolen too soon, as if any time would not be too soon. She was diagnosed with ALS while pregnant with her youngest child, and fought this horrifying illness for these last few years of her life.

I met Siobhan online, in an ALS forum on Facebook. Her posts, always supportive and bright, felt so real to me, so personal. After the first few months of anger and frustration with ALS, I decided to do some travelling, part of which was a visit with her and Tom last summer. I posted about it in my blog from September 1, 2013. It was an amazing, laughter filled couple of days complete with hugs and jokes and wine and Scotch, food, family and fun. She left in me an impression of a woman in the prime of her life, in spite of her struggle with ALS.

The truth is that I am drawn to strong women. I have two women who serve, not so much as role models for me in my struggle with my illness, but as examples of how you can deal with ALS and still retain so much dignity and so much personality. Siobhan and Ellen, who I wrote about both in a blog entry and in poetry. (Just so you know, I have men who I am close to in the ALS community too but this is not their story.) Both of these women, so different from one another, attacking ALS in such different ways, have shown that life need not be defined by this affliction. They both, each in their own unique way, have made it very clear that they are alive inside their withering bodies, just as am I.

Siobhan and Ellen both have young children. Siobhan, with an older son too, has seen at least one of hers grow to adulthood. Ellen is fighting to be with hers as long as she can; as she ruefully noted yesterday, ALS may take her in a few days, or it may wait for five years. Each day Ellen makes the most of that day; each day Siobhan lived her life fully and completely.

This is a disjointed writing, an entry not well crafted. There are tears coursing down my cheeks as I write this, the sadness disproportionate it seems. After all, I've only know Siobhan for a year. Yet that year seems a lifetime, that two days with her and Tom a beacon in my journey. She made a difference to me. Siobhan made a difference to many people.