A blog about living with ALS - and more

Voice

It’s the middle of the Jewish High Holiday season. I have been participating in synagogue services via Zoom, and I find that I miss saying the prayers out loud even more now than during Friday night services, which I also often attend via Zoom. It’s hard to feel completely present in the service without my voice.

A year or so ago, my son, Max, asked me which ability I most wished I still had since getting ALS. “Speaking,” I replied as quickly as I could type with my eye gaze device. Max was surprised that I didn’t choose walking. Sure, I would love to be able to move independently and do all of the things that go with mobility. Nevertheless, speech is the ability that would give me back my sense of self and independence the most.

My voice had an auspicious beginning. When I was born, hospitals still kept the babies in the nursery. My mom was in her hospital  room, resting, and she heard a baby crying very, very loudly. She thought to herself, “That poor mother!” Then the crying got closer. And closer… until it was in her room. She saw that I was “purple with outrage.” Her pity for the mother turned to pride, and she thought, “No one’s going to push her around.” 

For the most part, she has been right. I am no shrinking violet.

Getting back to services, I not only miss saying the prayers out loud, I also miss singing along with the congregation. Joining in song always flooded me with warmth and connection. Of course, if you ever sat next to me during services when I could still use my voice, you know that I sang extremely quietly, even silently. That is because I couldn’t carry a tune and I was both too self conscious and too considerate of those around me to sing audibly. 

A colleague of mine who was the school choir director told me that anyone can learn to sing. I heard the same thing from other professionals over the years. One of the things I had hoped to do after my kids were grown was take singing lessons. I just wanted to be able to sing on key, nothing fancy. I’m sad that I will never get to try.

In my next life, I want a beautiful voice. I want a voice that gets roles in high school musicals. I want a voice that leads others in song. I want a voice that lets me harmonize with my husband. I want a voice that allows me not to be a shrinking violet when the congregation sings.

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17 Comments

  1. Jessie,

    Thanks for sharing your thoughts and feelings with us. It’s lovely.

    It’s true that you’ve always had a strong voice. As your older sister, I also remember you as a baby crying and impressed (and maybe a bit scared) at how loud you were. You were purple! You got our attention!

    I would say that your voice is still strong, even through your eye gaze device. Your voice is beautiful. ♥️

    Sending lots of love and a hug from far away,
    Dina

    • Leonard Podis

      Dear Jessie,

      Thanks so much for this wonderful blog post. Your sister Dina says it perfectly: your voice is strong and beautiful. Reading your post, I couldn’t help but think of Keats’s words in “Ode on a Grecian Urn”: “Heard melodies are sweet, but those unheard/Are sweeter; therefore, ye soft pipes, play on.”

      With warm wishes,
      Len

  2. Sandra

    I too struggle with carrying a tune, which was difficult in my musical, sing-a-long family. In my 30s I took voice lessons which improved my breath support for a short time but didn’t significantly make me sound better. 🙄
    Maybe next time around we will both be beautiful song birds.🐦🐦❤

  3. Leanne

    Beautifully written. I can relate to so much of what you said. Jessie, you continue to have a strong voice. Hugs to you.

  4. Harriette

    Sending you hugs and love. The things we take for granted. Thank you.

  5. Ilana

    Jessie, I can only imagine how there are so many things you must miss. You were never one to sit quietly in a corner – that’s one of the things I love about you. You are always so good at telling people what’s on your mind. We can count on you for your honesty, your opinions, and we know that you will be straight with us. All of this remains true. Here’s hoping we both come back in our next lives as amazing singers.

  6. Mary MacKintosh

    Jessie.
    It has been so long since I have seen you. COVID made visiting impossible. I am glad you have your glasses, and that vision works to give throat to your thoughts. Purple with rage is a good start in life, and you will never shrink, violet or otherwise. Small, but fierce, you are. Sending you warm thoughts!

  7. sara esrick

    Dear Jessie- I agree with what everyone has said above. Your voice still is strong and powerful—I still hear it loud and clear. Love you. Sara

  8. Jay Lender

    ❤️

  9. Julia Chase

    Dear Jessie,
    Yes, you are still speaking to all of us, and inspiring us too. Here is an example: When Zoom Church first started for me in March 2020, I would sing the songs aloud here at home. After not long, I stopped. It seemed too weird to sing along with just my voice. I missed my fellow congregants singing along (we were all muted). Over time I found I was getting less and less from the worship service, since I was not engaging. After reading your inspiring message I found myself singing along last Sunday! It felt great! I felt more connected to my Church Family. Then Joe even joined in. I hope when you listen to your Services you will pick a voice that you like and pretend it is you singing! Why not? And thank you for the voice you do have! You continue to be a really great teacher with a very devoted audience! Thank you!

  10. Jenny Love

    Dear Jess,

    I loved reading this post. How wonderful that from the first moment of seeing you, your mom took pride in your powerful voice! I agree with you and others about your strong, assured voice.

    In addition to your verbal self-assurance, you listen really well, communicating lots of interest with your eyes and expression. I’m not sure how common it is to be both attentive and assertive, but I see these qualities wonderfully cohabitating in you.

    Thank you for your inspiring thoughts on voice and presence.

    Love,
    Jenny

  11. Shawn Simpson

    I can hear your voice in this blog! It’s still roaring . Lots of 💕

  12. Kathi

    Jess,
    Your voice still comes through even though your vocal chords are silent.
    I share your love of vocalizing as well as the hesitation to sing in public (my off-key enthusiasm was not appreciated by my kids, who still claim that the most effective motivator when they were teens was when I threatened to sing. Sometimes it was the only way I could get them out of bed for school in the morning…) May your dreams be full of glorious song, and your voice lead the chorus in your next life.
    Thank you for sharing, and for lifting your voice here.

  13. Miriam Rahav

    Jessie my love,
    Your words are so honest, humble, open. They invite us to come in and hold space with you and your experience. You are so loving. You create opportunities by your sharing for us to share. I’m flooded with memories of you: Nathan Bishop middle school in Providence. That crazy dog you had- who gave you such a hard time and how loving and patient you were. Seeing you in your school in Tacoma and your most recent visit with me in NYC. How precious each memory. Holding you in my heart with all my love and gratitude for our friendship.

  14. Rachel Nussbaum

    Sending love your way, Jessie. I’m sad for you that you don’t get to have the singing and speaking voice that you want right now, in this life! But, as others have said, your voice still comes through so clearly in other ways, especially through your powerful written words. As you continue to attend prayer services on Zoom and engage in conversation with friends, my prayer for you is that you are able to hear the strong and melodious voice of your dreams reverberating in your head and heart, the way the rest of us can. <3

  15. Judy

    When I read your posts I can hear your beautiful voice coming through 🙂

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