**I wrote this for myself and for my dear friends Dee, Sue, and Clarke who are suffering a great deal at the moment, I am sharing it because they felt people need to hear it. I am dedicating this to them and to all the people out there who are suffering silently and alone. Not just people who have chronically ill children, but people who suffer the after effects of rape, or alcoholism in their family, or have an “uninteresting” or “unpopular” disease that no one wants to have a telethon about or even sit down and talk about. It is the loneliness place to be.**

In Buddhism, compassion and empathy are central tenets in a philosophy that calls for Bodhisattvas to rise up and have such great compassion for the world that they give up all hope for moving out of the cycle of life and death because they are willing to stay to help others find enlightenment. In Christianity, Christ becomes the pinnacle that changes a faith from “eye for an eye” to “love thy neighbor as thyself” and his life is a demonstration that compassion and love for yourself and others is a great gift both to give and to receive. While the word empathy doesn’t appear in the Bible, the idea of “fellow feeling” is highlighted which is from a Greek word that means to suffer with another. It is apparent, since two such ancient and revered ways of living are calling for greater compassion and empathy in the world, that humanity tends to be lacking in that area. I personally believe that the instinct for empathy and compassion is innate in all of humanity and that it is something that is either learned out (the great American individualist mentality or “honey, don’t look at him, there’s something wrong with him”) or the instinct is buried by a life that is so busy and overwhelming that we don’t have time to be compassionate unless there is an immediate, specific, and interesting need to rally behind. It’s the long term, drudging call for compassion that is so hard to sustain. So organizations feel the need to produce uncomfortable commercials showing starving children digging in garbage dumps, commercials that are quickly changed by the viewers, including myself. So we send our check out, or in my case, it is automatically deducted from my checking account, to send nets to Africa and to support a child in the Philippines and we go on with our lives. According to my wise brother, in a discussion about Russian literature, Americans have forgotten how to suffer together and while I wouldn’t say it is strictly an American issue, I have to agree.

However, and this is a big however, so perhaps I should go back and capitalize it…HOWEVER, I am not in a position to be neutral about this topic. I am suffering at such a deep level that just writing this sentence literally makes my stomach churn and I am suffering in a silence that feels like a gag order has been placed on me. It is not good etiquette to stand out in the streets (or on the internet) and yell–HEY WORLD, I KNOW YOUR LIFE IS MOVING ON BUT…I AM IN AGONY. It’s considered bad manners to not respond to “how are you” with a smile and a “I’m fine, thank you, and how are you?” And the truth is, if it was only myself, I probably couldn’t break all these social restrictions as they are so deeply imbedded, but I know of other people who are also in agony and who are also feeling silenced by the weight of a world who really, really do not want to know the answer to “how are you” (I love you Sue and Dee). I am not advocating for a world in which every time a person asks the question they cringe as they prepare themselves to hear about how crappy each and every person’s life is, there is a place for social conventions and a place for sharing of agony. Well, I don’t know about the last, is there a place for that? I don’t know where it is. We create “grief support groups” so that grief can be contained in a circle that doesn’t leak out into society, think of the AIDs support circle in the movie Rent with people standing in a circle singing, “Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?” but without the camera wielded by a friend, no one would hear their suffering except those also suffering their same fate. Even among grief support groups we are segmented, cancer support, rape support, AIDs support, multiple sclerosis, adult children loosing parents, and etc., keeping our suffering neatly compartmentalized and contained. I was given a flyer at the hospital as being the perfect support group for me, but when I called, it wasn’t for me because my son doesn’t have cancer. What happens when your private agony doesn’t have an allotted place to grieve, where do we go then?

See a therapist, some would counsel, let’s further contain the suffering in a one on one closed room where we can fix it in anonymity and no one even needs to know. Some might say another option is to the doctor’s to get medication, and I am a great advocate of using both therapy and medication to help where it is needed, but let me be blunt here, and I do not speak only for myself–all the medication in the world is not going to change the reality that my son has a disease that not only cannot be cured, but due to other complications (like a twisting spine and closed off airway) cannot even be treated effectively. All the medication in the world isn’t going to change the fact that he needs oxygen to breathe, that he needs a permanent IV, that he needs nutrition pumped into his veins to support his body and he is STILL loosing weight, that his legs ache and his back hurts and he needs a wheel chair to go to Toys R Us. Medication will not change the fact that the world is celebrating spring and my heart feels squeezed under the pressure of nearly a year since surgery was ruled out and that a ticking clock drowns out the sound of my own heartbeat. Strangely, though, the silence is almost more nauseating than the sound of that clock.

I don’t believe that we should always have to pay a therapist to mitigate our suffering, or sit in a circle in a closed room, I don’t believe that we should always medicate our emotions–but as for what I do want, that is a much more difficult question. What is it that I really want, what is it that other people stuck in untenable situations of suffering really want? Some days I want the whole world to stop, to be honest, I selfishly want the  whole world to stop and pay attention, to see us, to hear us, to feel with us–but truthfully, people are good with “days,”  it wouldn’t be enough, because the next day people’s lives would move on and we would be still stuck in a horrible situation. I guess I just don’t want people to forget, I don’t want to feel like there is something wrong with me because I cannot just adjust, or compartmentalize, or accept our lot with quiet dignity so others aren’t forced to look at my pain. I want you to see my pain and not look away–but share it, not in the hopes that it will make it better, but in the hopes that it is simply not so horribly heavy.
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