I hold his hand but he doesn’t hold back. His darting eyes are the only windows left.
Ruth’s Tribe is a beautiful intimate memoir not just about husband Simon’s ALS (a motor neuron disease) nor is it focused on her friends, and fellow “Tragic Wives Swimming Club” tales and woes. It’s about everything that happens before and after disease decides to become a permanent family member. It’s the desperation to believe in and try every remedy or treatment on God’s green earth! It’s the torturous crawl as ALS steals Ruth’s beloved from her and their young children, much as the tide erodes the land. Each loss Simon suffers, the deterioration of every function, is a fresh gutting of the family. Before the gravity of their new reality struck Ruth, there was hope and belief that it could be fought! This line moved me “Alternative diagnoses seek unconventional cures. It’s a road that Simon is compelled to limp and trip upon.” Anyone who has ever dealt with illness knows too well the search, the desperation for answers, for ‘fixes’ and it’s not just the patient who lives with the despair. The healthy pass so much time angry that all they can do is watch in helpless horror as their loved one’s health is in decline. Those doctors are a last resort, they aren’t making it better! That journey, with the strength of friends, won’t change the outcome but the sick aren’t the only ones who need to be healed. Love and friends who can bear some of the burden, people who are solid, who can bring life and joy if only to still the chaos for a moment sometimes that is all you can ask of the universe. Ruth is lucky, and blessed with the best people in her life.
With everything so bleak, they decide to try for more children. The family grows and grows, Simon is there and yet not. The beauty of this novel is in the memories Ruth shares, from before she knew Simon and was just a young girl, to their early love when everything was so much easier to control, to the present when she admits she isn’t always kind and resents the things his family does for her. So often illness is wrapped up into a beautiful present, not so here. There is anger and fear. The children trickle in and out, one a worrier, another a ‘war baby’ all of them learning to have a father that cannot interact as ‘normal’ father’s do. Somehow it should feel more tragic, and it does, but there are moments so deliciously tender or silly that makes the reader feel a deeper connection to them all.
It’s tragic, of course it is! But life forges ahead, children grow up, there is no alternative to living with what the universe gave you. People talk a lot about love, but this is a genuine love story. There wasn’t a moment when I questioned the love Ruth has for her husband. I wish we could get into Simon’s mind though. I really wish there was a whole chapter about his thoughts and emotions, I cannot imagine the stillness, watching life spinning fast around you, unable to interact as much as your mind longs to.
It’s a poetic, honest, unflinching confessional of loving a man with MND, loving the children you have together and commiserating with other women, swimming to keep your sanity, swimming too against the disease. Some of her choices make their life harder, I’m stumped, but that’s how we human beings are. We want to change direction, because maybe tweaking the plan can change the outcome? The book is dizzying at times, and I thought it was perfect for a mind consumed by the weight of illness.
Incurable… disease isn’t the only incurable thing we have to bear. Life itself is incurable, and so we go with the tide….
Publication Date: March 6, 2018