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You Can Imagine…Guest post by Emily Rapp

13 Mar

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?

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4 Responses to “You Can Imagine…Guest post by Emily Rapp”

  1. jamesvincentknowles March 13, 2012 at 7:38 pm #

    It’s difficult to form words of empathy and compassion without reference to one’s self … the words “i, me, my, etcetera,” yet it is the paradoxical nature of life, wherein evidence exists all around us we are all connected. Why else would another’s caring, sympathy, empathy and compassion make any difference in our own lives?

    Indifference is, it seems, where we find the value of empathy and compassion. Your pain may not be my pain, but i do know pain. And because i do know it, i am capable of understanding the value of empathy and caring. I know the emptiness of indifference. It is the same pain we cause ourselves by rushing through life, day after day, year after year, without stopping to investigate the garden. Any garden. Just imagine someone pulling over to the side of the road rather than rushing to get to that all important destination, stopping to spend a few minutes enjoying something as simple as flowers in someone’s front yard, a park, along the side of the road. Stopping to catch that first breath, to inhale the moment, to observe up close the colors blending, to pause and allow imagination to wander. Right there, anywhere, where indifference ends, and life abounds.

    Weird thought, huh? Sounds ridiculous, doesn’t it? We know we can do, but few of us ever actually do-do. haha. . . “doo doo”~!

    What I’m really trying to say is, I can indeed imagine what you’re going through, Emily. Reading your post, it is very much like stopping in traffic, halting the rushing hurry of meaninglessness and pulling over to peer into someone’s garden. Therein i find the beauty of mystery, the paradox of life fully lived in love and the fear of losing the joy brought about by the courage that requires. Most of all, i notice my own heart beats without breaking, though it is skipping a bit as i read & feel your love pouring forth, and as it does so i recognize my own mortality. And very much like observing the garden teeming with life of all description, there i also notice the decomposition which nurtures everything that grows in it.

    And while i realize this post is, in the end, nothing more than another way of saying what you’ve said so much more eloquently, it is my hope it at least conveys with some empathy and love of love and life, imparts a bit of compassion & caring, and gives you a tiny bit of sympathy derived from a knowingness of how being aware of the treasure of real love, deep love, the giving-over of one’s self entirely sort of love, the allowing of every possibility type of love of which you speak. And in doing so, connects soul to soul, just a bit. A sort of spiritual conversation. A belonging-ness manifested. So okay . . . thank you for causing me to pull over, to take some time, to make some time, to imagine such love, and the loss of it, to death. Because of your post. You connected with me, Emily. My imagination is running wild.

    Namaste

  2. icanseealotoflifeinyou March 13, 2012 at 10:55 pm #

    Thank you for taking the time to write and most importantly, to share, such a true, beautiful, heartfelt piece. Sending prayers and wishes for strength, comfort, peace, joy, and laughter to you and Ronan. Also sending gratitude for your message, which is one of the truest testaments to love that I’ve read.

  3. Tasha August 25, 2012 at 4:30 pm #

    Your blog is amazing! I had a young family member pass away from sandhoff’s disease. You really come to appreciate life and to see how strong you can be for your loved one, they appreciate everything you do in caring for them and loving them. Life is so precious. Stay strong for your little one. My thoughts go out to you.

Trackbacks/Pingbacks

  1. You Can Imagine…Guest post by Emily Rapp « Manifestation Station - March 13, 2012

    […] Click here to read this gorgeous essay on the 3 Words For 365 blog! […]

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