“What does it mean to be human, at this time, in this country? I believe it means practicing a radical generosity and empathy, especially when it’s a struggle. You must look around in the soft darkness of your waking life, which is the partner of your dream life. You must understand that accompanying you always is your animal, primal, complicated, desire-driven, calm but desperate, brutal and brilliant self, blinking and breathing gently in the dark, waiting for you to let in the light.” –Emily Rapp, “Someone to Hold Me“
Early Friday morning my friend and mentor Emily Rapp lost her two-year-old son, Ronan Louis. At just ten months Ronan was diagnosed with Tay-Sachs, a genetic disorder that is always fatal. I wrote to Emily shortly after Ronan’s diagnosis. I searched endlessly for words, knowing that sometimes there simply are none. Finally I simply wrote that nothing I could say hadn’t already been said by so many others, and that there are no words anyway, nothing anyone could do say or do would take the pain away, but I’m sorry. So very, very sorry. What I really felt though, was a need to burst into tears and cry out I can’t imagine your pain I hurt so badly for you and am here for you and want desperately to do something, anything, to help, but I’m not sure how well I communicated that. I wanted to somehow take some of her pain away, to cry with her, anything. But this was her son, her baby dying in front of her eyes, her pain – and I wondered how I could even begin to understand what she was going through, particularly because I don’t have any children of my own.
Sometimes I feel other people’s pain so acutely it overwhelms me. I’m not one who can hide my emotion, and am not particularly interested in doing so anyway, but do recognize that many people are not comfortable letting any feelings, let alone grief, seep out anywhere other than privately. And I know from experience that often others don’t know how to respond or how to take someone who does reveal themselves that way. I tear up all the time, over books, movies, songs, sometimes not even knowing where the tears came from, or what they’re for. But usually my tears are for other people, many whom I’ve never met, and often for animals.
On occasion, my teary-eyed moments have been met with curious expressions by people who, it would seem perceive the extent of my emotion as “inappropriate” to whatever precipitated it. I’ve been told “You’re just, you know, hypersensitive,” or asked “Don’t you think you’re overreacting, just a little?” Sometimes these perceptions have led me to question myself, and stifle even brief surges of emotion, saving them for private moments, when I’m more comfortable letting go and simply feeling what I feel, whoever, or whatever, that emotion is for.
But this feels wrong, is wrong, and what I should really question myself about, if anything, is why I would keep compassion to myself. This is tantamount to hiding the fact that you care about someone, or something. As if we could be too compassionate, or treat others too kindly.
The more I’ve reflected on it, the more I find this absurd, this notion of over-empathizing.
As if we could measure empathy.
As if we should.
Not a day has passed that Ronan and his family haven’t been in my thoughts. After I wrote to her, Emily welcomed me to visit her in Santa Fe. I’d love to, and would have already, were it financially feasible. Many times I’ve imagined meeting Ronan, feeling his soft hand wrap around my fingers and smelling his hair and looking into those eyes, with his beautiful, long lashes. I wanted so badly to get out there and meet him and deeply regret not having been able to. But physically meeting someone, knowing them personally, is not a prerequisite to being deeply moved by them.
Reading about their journey has allowed me to look into their lives and learn about how Tay-Sachs affected Ronan’s body, to gain an understanding, as much as is possible for a person who has not lived what this family has lived, of what it means to watch a life you were meant to nurture slipping out of your reach, knowing it will be gone. It has allowed me to imagine how it would feel when others innocently asked about my child, and wondering how I would answer, to only attempt to fathom the vast and continually fluctuating range of emotions, and being forced to make impossible decisions, that should be required of no one. It has enabled me to empathize with a mother losing her child, though I have no children of my own, and to empathize with Ronan and his father and even other parents whom I’ve never met, who lose their children to this devastating disease. If you have read Emily’s words, you have gained an understanding of the grief and the anguish unique to parents whose children suffer and die from Tay-Sachs.
And if you’ve read her blog, you’ve also seen that not everyone is going to understand her grief, or agree with this particular way of managing it. Some have criticized, some have judged. This makes even less sense to me than criticizing another’s level of empathy: how you could criticize anyone wading through the current of grief is something I will never understand.
As if grief could be measured, weighed.
As if it should.
Grief is a wild card. There is no way to predict how it will hit you and no right or wrong way to deal with it. We will all know it at some point, and can only get through it however we may need to at that point in our lives. Some will find support with family, friends, or groups, some turn to religion, others will drown it out in a bottle, and writers will write through it.
As she watched her son progressively losing function, knowing he was dying, knowing there was no way to save him, Emily emptied her grief onto the page, sharing her son and their experience with the world in her blog, Little Seal. The strength she needed to nurse her son to his premature death, is beyond my comprehension. The courage it had to take to let the world in and experience this with her.
I believe that we read – and we write – to know that we’re not alone, as much as to let others know that they are not alone. We read and we write to understand each other, to understand ourselves. Empathy is essential.
“Empathy is the only human superpower – it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke social change.” – Elizabeth Thomas
I’ve read and cried through every beautifully-written post, grieving for her family, for all the families who have watched their children suffer and die, unable to prevent any of it. Undoubtedly many of you, like myself, were unfamiliar with the disease which, due to its being rare, does not get the attention that more prevalent illnesses do. But from Emily’s willingness to share Ronan’s story in her blog, and in her book, The Still Point of the Turning World, which comes out in just a few weeks, will come understanding. Empathy. Awareness. And with those things, comes hope.
Today, as I write this, my heart aches with a profound sadness. Some sadness for those who would limit their empathy or try to control grief, holding tightly to the notion these should be experienced the same way, to the same degree, by everyone. But mostly I am sad for Emily, and for Ronan. My tears are flowing freely, my love and empathy expanding boundlessly around me, and I hope they reach my friend, and her family.
Sometimes we are touched closely, by people far away. Sometimes we know them intimately, other times we are acquainted to a degree, but sometimes we don’t know them at all. Sometimes we find them along the way, similar circumstances drawing us together, the struggles we share pointing us toward each other so that we are not alone, or do not get lost trying to find our way on a journey that offers none of us a road map. Other times our experiences differ widely, and we may know little or nothing of what another is living, how it must be for them.
And yet we feel them. We feel for them.
As we should.
As we must.
A generalized truth: most of us have either imagined what we would do or have heard others name a few things they would do if they were the winner of tonight’s lottery, now up to over 640 million dollars. Pay off debt. Buy a house. Give some money to my family. Or friends. Or both. These are the most logical beginnings, and I am no different. Those are the first few things on my list too.
But even the $347 million left after taxes, should the winner choose the cash option of $462 million, leaves a lot of money. Even if you bought the most expensive house around. Even if you bought Oprah’s mansion. And took a string of expensive vacations. And bought an entire new designer wardrobe and got yourself that nice, new “Beamer” (sp? Guess I’m not much of a hipster.) you’ve been eyeing. What would you do with the rest? Even if, say, fifty people had to split it, they’d still each be receiving a phenomenal gift, one that should not be frittered away selfishly, in my opinion.
To the winner of this incredible sum, I offer a few suggestions:
- Most people have a favorite charity. If you don’t, pick one. Or several. If you don’t trust what they will do with donated funds, organize something yourself that will benefit that/those charity/charities. Or hire someone to come up with a plan.
- If, for some unknown reason, you can’t come up with one, ask your loved ones. Or don’t ask anyone. God knows the rest of the world will be watching, tracking your moves, to see what you do with the money.
- Whatever you give to these charities, there are a million and one other causes – and I’m referring specifically now to those that don’t get much attention – that truly need it. Those that certainly don’t get the attention they need and deserve. I will offer some of these now, in case you are undecided.
- National Tay-Sachs and Allied Diseases Organization (NTSAD). Tay-Sachs is a fatal genetic disorder that stops a baby’s development after only a few short months of life, then causes deterioration of their physical and mental abilities, ending in death. Before these babies die, they will lose their ability to swallow, experience seizures, become blind, deaf, and eventually paralyzed. Think about the horror of that for a minute. Then read about it, from someone living through this right now, on her beautiful and heartbreaking blog, Little Seal. Then ask yourself why there isn’t greater awareness of this disorder – which, by the way, can be detected with prenatal genetic testing.
- Child Sex Trafficking. Let me be clear: Children. Forced. Sold. Sex-Slaves. These are not prostitutes. They are children – our children (most children who are trafficked in the US are American) – taken and forced. Why don’t we hear about this more? Because people don’t want to talk about it. But that’s exactly what we need to do – talk about it. Draw attention to it. And if a group of teenagers can get together and form MINGA, a nonprofit founded by teens, to fight child trafficking by getting teens to work together, you can certainly bring yourself to give a little help too, can’t you?
- Pick something else that you don’t hear much about, another problem that doesn’t affect as many people as, for example, breast cancer, then start a foundation or a campaign to draw some attention to it. Rare disorders and diseases often get little attention simply because they don’t affect as many people, so you can imagine they get a lot less money and help. But I’d be willing to bet that some of the 30 million Americans that have these rare disorders would be eternally grateful. If you can’t think of any rare diseases off the top of your head, check out the website for the National Organization for Rare Disorders. They’ll have plenty of suggestions for you.
- Build a playground, a community center, a resource center, or something else and name it in honor of a loved one you’ve lost.
- Fund some research for a very common genetic disorder that, unfortunately, goes undiagnosed or missed more often than not (for reasons I’ll discuss in another post): hereditary hemochromatosis. When detected early it can be treated and lives can be saved. Undetected, it will cause all kinds of organ damage, and eventually kill you. Trust me. I’m one of the lucky ones.
- Or, if you just don’t want to invest the time, donate some to a foundation that will do it for you.
If I win the money, I will give some to all of these – and that’s a promise. (Now hopefully I’ll win and have to keep that promise!)