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My dying friend

Adding to the pain of a debilitating and fatal disease, is the indignity of being socially shunned

A young friend of mine is dying from a genetic disorder that robs a person of all physical, cognitive, and psychological functions. For any person who is sick, no illness is an ordinary one. However, hers is remarkable for the agonies it perpetrates. It is a slow acting demon that gradually blunts your ability to move, to the point where your mostly intact, conscious mind becomes a prisoner inside your utterly paralyzed body that can wither indefinitely.

As her peers move confidently into their futures, my friend can only look back upon a fading past, as she teeters at the edge of a deep well. For now, she is prevented from falling by a rope consisting of family and friends, as well as her own sheer determination to keep living. Yet she knows that the demon will eventually loosen her grip on that rope and pull her into the darkness.

Almost every month, my friend and I write her memoir together. Her disease is relatively rare, and like every life, hers is unique. Too common, however, are the continued instances of fearful mistreatment by others that she has shared with me. She is not looking for pity and she is certainly not interested in being infantilized. She wants only what we all want: to be treated with dignity and compassionate understanding through the duration of her life.

Recently when we were writing, my friend told me with great sadness about a neighbor with young children who one day steered them away from her on the street. This is possibly because, as a result of her physical impairments, she at times appears strange; her jerky, discordant body movements can seem frightening to people who do not know her. I asked her, “If you had exactly one minute during which every person on the planet who might stereotype you were listening only to you, what would you say to them?” With her permission, I am telling her story, using her words:

I have a genetic disease and I am going to die from it because at present it has no cure. This is not my fault. I did not contract this disease through anything I did, and you cannot contract it from me. You all need to know that it affects me and others with this disease in three ways: in our movements, cognitively, and psychologically.


People like me may walk and talk funny, or dress in baggy clothes. But before I was diagnosed, I had a full life. I have lived all over the world. I can still talk about my travels and adventures. For now, I can still remember those things I love talking about. I still feel like me too, but that will not last for long. What do I need, a bigger medical bracelet or a tee shirt telling you that I am not crazy and I am not dangerous, only disabled? Try to honor people like me. Look past all that is on the surface and see what is in our insides.


When you run away from me, you are playing the role of a mother bear trying to protect her cubs. I get that. People instinctively avoid those who they assume are crazy or demented. I get that, but do not do that. That is what folks do to me. I am a victim of premature judgments. Please, learn to see and love the person behind the disability or the disease. Try not to judge us, for in judging us you are only judging yourselves.

My friend is knowledgeable about Judaism, so we talked about the famous teaching found in Pirke Avot, Ethics of the Sages:

Do not look at the bottle, look at the contents inside. There are new bottles that contain old wine and old bottles in which even new wine cannot be found.

On the surface, this is an ancient version of the warning not to judge books by their covers. However, I think this teaching articulates more beautifully and forcefully what my friend is trying to say about our persistent, fearful misjudgments that arise when we encounter people like her. Pirke Avot is referring to those young people, new bottles, whose few years mask the old-soul wisdom they possess within, and to those older people, old bottles, whose many years have done nothing to help them acquire genuine wisdom.

Well produced wine improves in quality with age especially in older, seasoned bottles, but apparently even in newer, less cured ones. Thus, bottles and their wine are perfect metaphors for the way in which outer appearances such as age can fool us into believing that we truly know a person. These metaphors also describe many fine people who, like my friend, suffer from the indignities of our terrified first impressions because of their disabilities.

I would only modify one part of this teaching. At times, the bottles are not new or old, but broken. The wine is still rich and robust, but it is leaking and soon it will be consigned to the earth on which it spills. The bottle and its precious contents are not garbage, they are gold. Treasure them, for they will soon be gone.

About the Author
Dan Ornstein is rabbi at Congregation Ohav Shalom and a writer living in Albany, NY. He is the author of the forthcoming book, Cain v. Abel: A Jewish Courtroom Drama, which will be published by the Jewish Publication Society in 2019.
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