Beth

There once was a lovely woman named Beth Strum, who left the world way too soon.

We met 20 years ago, when we participated in a local Jewish group for mothers and middle school daughters. It was designed to enhance dialogue between moms and their girls during difficult teenage years and to keep the values of and connection to Judaism strong.   

While we stayed in contact for the most part since then, our friendship began to grow some 5 years ago when we began to get into the nitty gritty of our lives which, for us, meant our families, relationships, politics, shows we liked and most exciting to me was that I learned we were equally passionate about my favorite hobby...writing.

Beth was a natural poet and over time began to share much of her writing with me, often about the students she worked with in school and one about getting her young son (now grown) to clean his room. We talked about how to turn this poem titled “Toys with Wings” into a book with illustrations that he could enjoy as a keepsake and could also pass on to his children when the time came. Her poetry oozed with adoration for all the people she loved.

As time went on, she wanted to write for a broader audience to stimulate meaningful conversation with family and friends about current and historical events and the role of religion in our lives. She liked the idea of blogging – sound familiar? – and asked me to help her get started. She also began to write for a friend who had created a start-up women-oriented website/app that she later invited me to join as well.  

One day while chatting about each of us being the “baby” of 4 siblings (although she was a twin) and other commonalities we had recently discovered, I threw out an interest of mine that I was sure we did not share, because I had never met anyone else who wanted to do it. I told her I had just signed up to be a hospice volunteer.

I was shocked when Beth said that she had been talking with her neighbor, a hospice volunteer supervisor, about registering for training sessions and that she, too, was eager to get started.   

And once again, ironically, with all the hospice organizations around, this supervisor was the same woman who brought me onboard. So, in addition to writing for the same website/app and blogging, we were also going to visit hospice patients with the same goals in mind: we wanted people who were dying and who felt alone to freely speak about their feelings and/or memories, or just have company in their last days.

When I started volunteering, Beth always wanted to hear about my interactions with the patients. Although I relished conversing with those who wanted to engage, there was one gentleman who had been difficult to read. His eyes were always glued to CNN, and he never turned to look at me, nor did he ever respond to anything I said. Unfortunately, I took these actions somewhat personally and asked my supervisor whether she knew if he really wanted company and, if not, perhaps I should respect what I interpreted as his desire for peace and quiet and therefore not stop in anymore. The last thing I’d want is to irk the guy.

But then she explained that he had the devastating diagnosis of ALS - Amyotrophic Lateral Sclerosis – a progressive neurogenerative disease that affects nerve cells in the brain and spinal cord. He was, at that point, unable to respond in any way. He could not turn his head, lift his arms, sit up, stand, walk, eat, speak, nod his head, or write.

Although I had not known anyone personally who had been stricken with this, I had heard of ALS and had seen the disease portrayed in movies, one of which centered around baseball player Lou Gehrig. I also developed a better understanding of it when the 2014 Ice Bucket Challenges took over social media, thereby raising widespread awareness and funding for scientific advances and expanded care for people living with ALS.

My supervisor asked me to continue to visit and to say hello to him at the foot of his bed so he could see me right away but off to the side a bit so as not to block the TV. She explained that his hearing and mind were sharp, so I should tell him I’ve come to see him and that I then acknowledge the photos of his family and pets that were hanging on the wall. She also told me not to ever verbalize thoughts about him to a caregiver or anyone else within an earshot since he would have been able to hear everything.     

When I told Beth, who was also a therapist, about him and how inept I felt, she told me in her soft and gentle but firm manner that even though he was unable to look toward me or speak that I should continue to visit, be sure to smile at him when I am in front of him, and she also suggested that I touch his arm periodically so he could actually feel my presence. Beth always gave good advice.

It was during this period of our communicating multiple times a day due to our growing list of shared interests that she mentioned her concern that something was wrong with her. She said she had been feeling unsteady on her feet and fell a couple of times in recent weeks. When I tried in my normal manner to minimize this situation so she wouldn’t worry – while also stating she should contact her doctor – she mentioned that a couple of people had also told her that her speech sounded garbled.

I asked her whether she had been wearing new shoes, whether the surfaces were level where she had been walking, whether she was having troubles with her teeth and so on. There was nothing explainable about what she was experiencing.

We mostly “talked” on Facebook messenger which meant that I couldn’t see or hear her voice, although she did call me later in the day to talk further about her concerns, and we met for lunch that next week. It was clear that her speech and gait had changed.  

It turned out, once she finally got in to see a neurologist which took way too long, that Beth had ALS.

For a few months, she continued to share with me her emotions about life, ALS and dying via Facebook messenger. It was unimaginable and so very sad beyond words to be so close to someone so vital and loving and young who was acutely aware of everything going on, including the fact that she wasn’t going to be around much longer.

As her decline worsened and she was not able to speak clearly, she brought up (through texting) how frustrating it was to be able to hear – although she was also grateful for it – but not respond...making her feel, at times, invisible and irrelevant.

Beth let me visit her once at home before she was bedridden, when she was using a walker. Since she no longer could utilize on her voice, she sat on her sofa and pointed at the space next to her so I would sit there. I smiled at her as much as I could and sat close with my hand on her arm, the very gestures she had suggested for me when visiting the man with ALS.

As we sat together, she tried to start an exchange of thoughts through texting on her phone/iPad. She became frustrated because it took so much time and effort to try to get her point across given that she was unable to touch the correct letters, fix typos and, therefore, contribute to and advance the conversation as she would have liked, as she had done hundreds of times before her body had betrayed her.

After our visit, there were a few weeks when she wanted to converse and would text messages like this: Grandbaby today? or News? Or Blog? Or whatever the subject was that she wanted to hear about - with a question mark. I’d then respond with a few sentences, and she’d reply, for as long as she could: “TY.”

Once communication became infrequent, I would have really appreciated her guidance on how to be a good friend and how to provide comfort and companionship as she became incapacitated, but at that point, I was on my own.

Beth passed away two years ago. It has taken me this long to be able to write about her.