A blog about living with ALS - and more

Successor Skepticism

In the new Marvel TV series, The Falcon and the Winter Soldier, the government introduces a new Captain America. The new one replaces the original Captain America, Steve Rogers, who retired from his career as a superhero at the end of the movie, Avengers Endgame. Max, who was watching the show with me, rejected the new Captain America right away. I tried to keep an open mind, but it was hard. We loved Steve Rogers. Any successor is going to have to prove himself.

On Thursday I had a similar experience at my ALS clinic visit. The ALS clinic involves four teams of specialists who rotate through the exam room. One of the teams is the care coordinator from the local chapter of the ALS Association, along with a social worker. Some months ago, Suzy, the fabulous social worker, left. On Thursday, a new social worker appeared. I will call her Rhonda.

As with the new Captain America, I tried to keep an open mind about Rhonda, despite her off-putting first moves: when she entered the room, she went right to the computer without saying anything. After a minute, she introduced herself to me. She never acknowledged Barry. She only acknowledged Ellen, who was there via FaceTime, after I called attention to her.

Rachel, the care coordinator, joined us by Zoom, and took the lead on asking questions. One of her questions was, “How has your mood been?” To which I answered, “Pretty even.” That’s the truth. I definitely have episodes of sadness, but most of the time I’m content, due partly to a low dose of anti-anxiety medication. 

Rhonda had been silent throughout the conversation. As we neared the end of their time, she asked, “How’s your mental health treating you? Are you still seeing your therapist?” 

Seriously?! First of all, we don’t even know each other, and that’s your opening question? Second, weren’t you listening when I answered Rachel about my mood?

In my stunned state, I responded that although I’m not currently seeing my therapist, I still could if I wanted to.

She followed that with, “Do you feel depressed or sad or down?” 

Ever?! Of course I get sad; I have ALS!

I responded, “No.”

As with teaching, it’s all about the relationship. Rhonda did nothing to establish a rapport. I reacted as many students do when they don’t trust the teacher: I refused to open up.

I have very high expectations of professionals and little tolerance for what I view as falling short. I do, however, believe that people can improve, especially with the right feedback. I don’t have a direct line of communication with Rhonda, but I will send some well crafted feedback to Rachel, who can pass it along. The real test will come in three months when I return for my next visit. Let’s all hope that Rhonda develops effective people skills in the interim. 

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7 Comments

  1. David Lasky

    Thank you for writing this. Myself being an occasional guest in other teachers’ classrooms, you’ve reminded me of the importance of establishing a rapport, even a little one. My goal lately, with online teaching, has been to try and encourage a few more students to turn their cameras on, or at least use their audio when a question is asked, so I know that they’re really there. I generally have about 50 minutes to present a lesson, giving us only so much time for interaction. But I think everyone appreciates it when it does happen.

    I hope things do improve with your social worker.

  2. Linda T

    “Congratulations, Rhonda. Whatever mistakes could be made in an initial meeting with a client, you made them. Tell me something, Rhonda, how long have you been a practicing social worker and how do you feel working with ALS patients?”
    (It is difficult for me to describe my outrage over the sheer incompetence of this person.)

    • I’m so sorry “Wrongda” (as one of my friends has dubbed her) is your new social worker. She does seem to be in the wrong line of work or, at best, needs some serious training on how to work with people and patients. I was a bit surprised you didn’t put your new wheels in motion! But it’s possible she was distracted or having a bad day. For your sake, I hope Wrongda rights herself and Rachel can help in this process. Or you get a new social worker! You’re a rock star.

  3. It’s a shame your previous social worker was replaced by such a poorly casted disappointment.
    For the sake of those she works with, let’s hope she receives your feedback and learns from it – or gets sent back to to the casting office.
    Take care.

  4. Leanne

    Thanks for sharing. I have had the same issue from a few of the professionals at the clinic. Particularly the nurse who keeps asking “are you receiving palliative care yet?”. She never comments on the fact that I have been relatively stable for over two years but focuses strictly on the negative. Hang in there. Enjoy your posts a lot!

  5. Rachel Nussbaum

    Thanks, Jessie, for continuing to share these glimpses into your world. I’m sorry for the lousy social worker experience, and think you should definitely try to provide feedback. (I had a parallel experience with one of Mia’s docs a few years ago – looking at the computer and never at the child – and I requested to be reassigned to a different specialist and also gave Seattle Childrens an earful!) In addition to having a therapist you can call on, I hope you also know you have a rabbi at your disposal, absolutely any time. <3

  6. Julia Chase

    Well expressed Jessie. I love your comparison with the new Captain America. Sorry to read your Dr. visit was upsetting and irritating last week. Insensitive staff is the worst! Hope she improves – a lot! With feedback from you, I am sure she will. You are her Teacher. Thank you for all that you are doing for others, including these insightful, well- written, heartfelt, personal blogs. I really value the thought, feelings and emotions you share.

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