On telling me how you feel

Hello, my friends. I’ve been absent, and I’m back. I don’t know how often I’ll appear, but I will do my best. I’ve been through the most hellish years of my life, the last few years (not that they are over), and I’ve learned a few lessons. In no particular order, here’s my lesson one: The truth is, I don’t understand how you feel, and you don’t know what I’m going through.

This is a truth we all probably know, at least on some level, and yet we often say these things: “I know how you feel.” We say them out of best intentions, from the deepest sympathies of our hearts, from a desire to help someone in grief or pain or hardship, and we are wrong. Because no one ever knows how anybody else feels.

I had done this myself, I’m sure, probably for many years, but I’ve become acutely and persistently aware of the phenomenon, more than I had been before, in the past year or so—at first because my health deteriorated into one crisis after another while my mother’s health deteriorated as well, and I was juggling her home hospice care and her crises while I was in and out of hospitals and juggling my crises at the same time; then because my mother died and I was flattened, destroyed, ground up by grief and sick and raw and barely alive from it; and now because my grief is in the background but my disease is in the driver’s seat, and I am declining and disabled and out of treatment options because my body tends to react to therapies violently and unpredictably, and attempting to treat kills me faster than not attempting to treat. And since there are a lot of nice and well-meaning people around me, I have been hearing on a weekly, sometimes daily basis that they know how I feel and they know what I’m going through.

What they are trying to say is that I’m not alone. What they end up saying is that I am.

Most people don’t know any details of my disease, but they know I’m sick, and they want to make me feel better because they’re nice. “I know how you feel,” they say. “I had a monster flu once that made me miserable for a week!” I hear it after dragging myself to rehearsal with pneumonia, pericarditis, severe abdominal pain, and widespread joint pain (some of which is in my hands, and I’m the pianist), and this is barely considered a flair-up–since I am, after all, able to stand up, and I am between a meningitis and an ischemic colitis, nor is my skin coming off in pustulous layers, and even though I’m hacking my lungs out, I can breathe, so my condition is moderate, not a crisis, and I’m at work. And I hardly know what to say to the monster flu remark.

A lot of times it’s both more wrong and funnier. “You look better!” they say. “You’ve got color, I’m so glad!” I don’t look better. I’ve got the sickly flush on my cheeks that comes either from my disease or from the huge steroids taper I’m on that’s up from my chronic steroids dose. But people want to be positive, so I have color. After a hundred times, though, it begins to wear on me.

Sometimes the conversation gets more serious. “I know how you feel,” they say. “I’ve lost a mother too. It’s been fifty years, and I still miss her.” Or: “My sister died only a week ago.”

Yes, we’ve all had loss, and in that, we understand each other. My mother, of course, is not my first loss. But here’s the problem: Loss is the constant of the human condition. Its similarity is unquestioned and unifying. The differences underneath are vast and make us who we are—the variety of human experience. The mother of the woman who still misses her after fifty years died suddenly of a stroke in a nursing home, and she got the news via a phone call. My friend and her sister, who died only a week before my mother, had not spoken in years and reconciled only days before the death. I will never understand what it’s like for my friend to have lived on the outs with her sister, to have found out she was on her deathbed and rushed to her side, to have some relief from final reconciliation and God-knows what feelings left over after her sister’s death: Guilt for not reaching out earlier? Resentment? Unfinished business? Unresolved conflicts? Unsaid, undone, unformulated emotions? Unasked questions? I don’t know what she is going through.

And neither she nor any of my other acquaintances, nor anyone, really, can understand what I feel after having given up my one dream, my call from God, to care for my mother, and having spent years shut up in the house doing it, all day and increasingly all night, crisis after crisis, wound care and daily care and emotional care and doctors and insurance and medications and symptoms and hygiene and decline and more crises and dressing changes and nurses and symptoms, fighting for what she needs and providing everything she needs, watching her light, her essence go out, understanding her when she could no longer find words, calming her pain, washing her skin, making up rhymes to keep her grounded, keeping her unafraid, being there always, always, no sleep, no rest, listening to her move at night, no one to share responsibility with, and she would reach for me like a child and smile, and it was all worth it—four years of deepening hell that was the hardest thing I’ve ever had to do, harder than I ever thought it would be, every day a moment I was convinced I couldn’t go on—and it was worth it. My life’s greatest ministry. My life’s greatest love. Now over. She died in my arms, and I washed her and wrapped her and filled in the grave.

None of the people I know can understand what I am going through, having accomplished this one thing: delivered my mother to the earth and heaven with this much comfort and this much dignity. And lost it. Done. Moving on to what time I have of my own decline. To find meaning in it. To leave behind more than my mother’s grave: Books? Perhaps. I hope. My sister and my father can come close to knowing this because they were there to see it and to help, but even they don’t know. And I don’t know what they feel exactly. What inner conflicts are brewing within them besides exhaustion and grief and loss: Is there guilt? Unfinished business? Resentment? Anger? Contentment?

I have begun to watch myself now, when I express sympathy, not to say “I know how you feel,” even though, I imagine, some people might find it comforting. We can’t ever please everybody, can we? But I am so aware of the untruth of it that I can’t say it anymore, and I say something else. A simple “I’m sorry.” Or “I miss her too.” Or the ancient Jewish formula: “May you be comforted among the sorrowful of Zion and Jerusalem.” A wish. I try to be short and simple and careful, not to give advice, and not to find a bright side. Some of the most awful things people have said and written to me after my mother’s death were the remarks attempting to find a bright side. “I’m sorry your mother died, but…” No-no. It doesn’t matter what follows the “but.” It should never be there.

Ultimately, I think it’s all right that everyone understands loss and pain but no one understands your loss or my pain. I’d rather people wanted to know what I was feeling than knew already, wouldn’t you? I’d rather be able to share and to complain and pour my pain out to someone who wants to know.

And so, if something bad happens to you, my friends, if you are in pain—let’s do that, shall we? Tell me, and I’ll listen. I’ll understand something of what you feel in relation to what I’ve felt, but your story will always be yours, and I’ll only speak after you tell me. And the unifying human condition will let us hurt together, and grieve together, and be, in our unique ways.

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    • Terry Wasinger on March 29, 2019 at 13:59
    • Reply

    Blessings, River Adams, blessings on you for this writing today! I needed to hear all of this; I need to learn from this. I am blessed by knowing you! Will write more later.

    1. We are mutually blessed, dear Sr. Terry. Thank you for being here. It is good to hear from you!

  1. Thank you for sharing your heart, grief, and experiences. I will not tell you that I understand how you feel but I do know how I feel. It’s been three months today since my sweet mother passed away at the age of 89. My husband and I moved back to the town where I grew up six years ago to care for her fulltime. I feel sad, a little lost, orphaned (dad has been gone for years), joyful she is no longer hurting, grateful for the six years I had with her every day – so many emotions. I’ve also had my share of physical illnesses – cancer twice plus other things. It’s really true that we never know what another feels but we can empathize having gone through similar experiences. My hope for your physical condition is that healing presents itself quickly and emotional healing through your grief process brings peace and comfort. Blessings always!

    1. It is true, dear Tracey. I certainly recognize some of my experience in some of what you’re describing, and I am hurting for you. That’s the nature of our lives, isn’t? Always similar and always different. I suppose, there wouldn’t be any point otherwise. Thank you for your well wishes, and I wish you most well also. My illness is incurable, but healing is not the same as cure, is it? Healing is an excellent word! Thank you for finding it.
      With love,

    • Eugene A. Koene on March 29, 2019 at 15:42
    • Reply

    It’s good to hear from you again. I came to know you through your book about Leonard Swidler. I’ve met neither of you in person, but you have both become important witnesses in my life through your writings. We are one in the Spirit. May you experience abundant comfort and healing.

    1. Dear Eugene,
      thank you so much for your wishes and your sharing! What a wonderful thing for me to know! Of course, I’d love to know more about your experience with the book, and I’m sure Len would love that as well.

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