I can think back to the first time my sister told me about her new friend Emily. I could tell by the way she spoke about this woman that they would be great friends forever. Of course I was right.
Then came the news of her son Ronan’s diagnosis with Tay-Sachs. It was devastating. This was not just some random child that you saw a poster of their face at the doctor’s office. This was Emily’s child, this was my sisters close friend. Since that time I have come to become friends with Emily as well.
Emily and Ronan have taught me so much since he was first diagnosed. So many things came into focus for me after reading Emily’s blog and hearing her words. So many things shifted into place about my own struggles with having a child with Prader Willi Syndrome.
I asked Emily some time ago if she would write a 3 word guest blog for me. I couldn’t think of a better person to have on my blog. Emily is a professional writer and I knew her words would be powerful and poetic.
This is what she sent me last night. It is amazing, as I knew it would be.
I encourage you all to read this beautiful piece of writing and then take some time to learn about Tay Sachs.
You. Can. Imagine.
What are the limits of imagination? Can we truly ever breach those limits (which are themselves imagined), and what would happen if we did? I’ve often asked myself these questions since my son Ronan, nearly two, was diagnosed with Tay-Sachs, a terminal illness that will land him in a vegetative state before his likely death within the next year. From parents (my own and the parents of other children), friends, colleagues, strangers, the dearest people in my life – everyone says: I can’t imagine. I couldn’t do it. I would die.
I believe that none of these statements is true. What makes the situation with my son so horrible is that one can imagine such a loss; if you allow yourself to feel great love (which is not an option when you are rocketed by love for a child, a connection that allows for no option but to be all-in), then you must imagine gutting loss. You cannot have one without the other. To fully live is to tremble, always, on the lip of losing everything, which is why true love – of a child, of a parent, of a partner, of a friend, of a pet – is so terrifying, and why many people never allow themselves to feel it fully. I certainly didn’t before this experience with my son, and I am grateful for what he’s taught me in this respect.
I fully understand people’s reactions – I myself don’t want to imagine my son’s regression and then his death, so I can see why other people resist picturing such a scenario. However, when people tell me they can’t imagine what I’m going through, it creates a false sense of distance between us, when the single only thing that mitigates my grief is authentic human connection. When faced with impossible situations, human beings are both incredibly vulnerable and impossibly resilient. Nobody wants to be stranded on the planet of grief on his or her own – it’s lunar and lonely and barren enough as it is. My imagination has saved me – it has helped me write Ronan’s story; it has helped me envision what experiences inside his compromised, immobile body might be like; it has allowed me to live more authentically because I can see a new way of living without my old fears, my silly stories. This, in many ways, is not what people expect to hear from the mother of a terminally ill child. It’s not what I imagined I would have done, had someone told me that this would be an experience I’d face in my life. But now, here I am, and the only thing I’ve got that makes me think I can survive this journey is my work – writing — which runs on the engine of imagination.
Imagination fuels all of our lives. We imagine jobs, partners, projects, homes, careers, evenings out, outfits, meals, gifts, holidays. Without imagination we would have no hope, no memory, no ability to feel either despair or desire. So yes, nobody likes to imagine the death of anyone in our death-phobic culture, least of all the death of a loved one, of a child.
But in the end there are no limits to what one can imagine. It’s how humans are built; it’s how we survive. You could care for a dying child if you had to, because that’s what love would require. You would not die (although you will eventually, of course, as we all will); you would survive it – again, because you had to, and because you’d find a way to experience yourself differently, to see your life differently, to imagine the world differently.
I’d like to have another kind of conversation – one that creates connection between myself and other human beings (all of us mortal, in the end, all of us terminal), instead of distance, instead of space. People often ask me: what can I do? What would help you? This is my answer: imagine. Let yourself imagine. Go to the outer emotional limits of what you think you can bear. Imagine what it would be like to lose the people you love most, to never see them again, to bury them, to mourn them and then to miss them for all the remaining days of your life. Allow yourself to feel that rib-cracking pain, because this is the deep, dark, glittering side of the logic-shattering love that all of us, if we’re lucky, feel at some point in our lives. I am lucky to be Ronan’s mom; in a sense, I never could have imagined that I could love so much or give so much or lose, of course, so much. You can imagine. Is there really, truly, any other path to choose?