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.
