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The Waiting Room

For this entry, I am going to veer off from my usual sort of topic. I imagine many of you have either had the misfortune to have a life-threatening disease, or have stood by a loved one as they dealt with one. Since dealing with a serious disease is, unfortunately, more common the older one gets, I thought my readers could relate to my personal experience as I describe it in the below piece. I sincerely hope you will share your stories–how you felt, coping mechanisms–in the Comments section below. As always, thank you for reading.

 

I see the same people every day.  We smile at one another, exchange looks, but rarely does a word pass between us. As fellow members of a club to which none of us wanted to belong, we share a common experience for weeks on end and then will go our separate ways, not even knowing each other’s names, never seeing one another again, having no idea who recovers and who does not.

A mother and son sit diagonally across from one another. He looks to be around 18 years old and wears a brace to support his neck, possibly weak from a tumor pressing on his spine. I have a son about the same age. He holds a small, worn book in one hand and rocks back and forth, deep in concentration as he recites t’hillim (psalms). His mother clutches a similar book in her hand but barely glances at it, spending most of her time speaking on her cell phone in rapid fire Yiddish.

I spot a man who I remember seeing in the waiting room on the day of my first doctor’s visit. Just a few weeks ago he appeared healthy and fit. I remember wondering whether or not he was a patient. Now he is gaunt and weak; he shuffles as he walks. I reach for my husband’s hand and squeeze it, trying to focus my attention elsewhere. I notice one glove sitting on the receptionist’s desk, waiting for whoever left it behind to come back and claim it.

People hammer away at laptops or hold books, some reading, some just staring at the same page without ever turning it. People slump in their seats, balling up their coats to make a headrest, trying to get comfortable in the rigid chairs. Every time we go to the hospital I bring a bag packed with books, puzzles, magazines, my iPad. Distractions so I won’t notice the long wait, won’t ruminate on the reason I am here. But I rarely take anything out of the bag. Too many choices. Do I want to play Sudoku or check my e-mail? Should I read a book or the newspaper? It’s too hard to make a decision, even about something so inconsequential. My husband goes to the beverage station where the hospital provides free drinks. He comes back with two cups of bitter, lukewarm coffee.

The great Jewish scholar Rabbi Abraham Joshua Heschel wrote that humans, “may shape and change the things in space as we please. Time, however, is beyond our reach, beyond our power…no one possesses time…time transcends man.” I would add that time not only transcends man but that it also possesses us. Certainly, that is true here in the hospital waiting room where we are all in limbo. You’re waiting for someone to see you or something to happen and you have no idea when the waiting will be over. Should I start this chapter or is the doctor about to call me in? If I leave to use the bathroom will I miss my turn in the blood lab?

A thought experiment created by a physicist in the 1930s is known as Schrodinger’s Cat. It posits the paradox that if a cat is in a box, before the box is opened it’s as if the cat is simultaneously dead and alive. In a few weeks I will sit in the doctor’s office, waiting for her to tell me the results of my post-treatment scan. Has the cancer come back? If so, is it localized or has it spread, that ugly word “metastasized”? Until I hear the verdict, there will be that sweet, blissful kernel of time where no matter what the reality is I can hold onto the possibility that I am a NERD—no evidence of remaining disease. I can almost convince myself that reality might change as long as the words remain unsaid. This is pure self-deception. Once you look inside the box, once the doctor sits on the stool in front of you with your chart on her lap, the illusion that there were options evaporates.

Yet even good news comes with a “caveat emptor” attached. Cancer may yet launch another stealthy insinuation into my body at any time in the future. For the rest of my life I will need periodic tests and follow-ups and scans, and I must resign myself to the fact that uncertainty will now be my permanent companion.

I think back to that unclaimed glove. It’s hard to not notice that you only have one glove. Maybe its owner can’t bear to return to the hospital. It’s worth it to buy a new pair of gloves to not have to go back where you will be reminded there is always the chance for that other shoe to drop. There is no choice other than to accept the waiting.

Taking A Chance On Myself

Volunteering has been an important part of my adult life. I have served on the boards of several nonprofit organizations, including as a charter board member of a group that provides free legal services to victims of domestic violence. I know that serving on these boards provided a valuable service to organizations pursuing noble goals. But in these positions, I felt too far removed from the good work being done “in the trenches.”

I have also had experience with “hands on” volunteering. When I was in my twenties, I spent one night a week in a church preparing tax returns for low-income individuals, pro bono. I served as a court advocate for adults-both women and men-seeking restraining orders to protect themselves from domestic violence. For several years I was a docent at an historical synagogue in New York City that is now a museum, dedicated to telling the story of Jewish and other immigrant groups who came through the Lower East Side upon arriving in the United States.

However, all of the above made me tense and anxious before, during, and after my shifts. Apprehensions of all sorts ran through my mind. What if they found me dull or not particularly helpful? What if I gave them incorrect information? What if I simply did a lousy job?

I was not surprised by these emotions. I have never been comfortable around strangers. I hoped that once I immersed myself in the experience, I would begin to feel competent and at ease. Sadly, that was not the case.

I know volunteering isn’t about me or my needs. In my opinion, if you volunteer in order to feel personally fulfilled, you’re missing the point. You do it to ease someone’s suffering, to make a difference, large or small, in someone’s life. Nonetheless, I didn’t think it was selfish to look for a position that was a better fit for me. I felt my misgivings and limitations were making me a less than effective volunteer.

A friend of mine suggested I volunteer for the organization where she works. Its mission is to provide comprehensive care, close to home, for children with cancer and blood disorders and their families. Its network of outpatient clinics comprises seven pediatric hospitals in the NJ/NY/Philadelphia area that serve over 6,000 children a year.

The organization was founded by a couple who lost their nine-year-old daughter to cancer over 40 years ago. During their daughter’s illness, they had to travel hours-sometimes more than once a week-in order for her to receive the best treatment. This exacted a profound toll on the entire family, including their other young daughter.

They vowed to find a way for children to receive treatment close to home, thereby making the patient more comfortable, and minimizing disruption to the family. Today, the organization provides numerous services-medical and psycho-social. (You can learn more at www.thevaleriefund.org.)

When a child is receiving treatment for cancer or a blood disorder (such as sickle cell disease), they often spend many hours at the hospital. They may be bored or uncomfortable or frightened. Weary parents or caregivers may need a break from sitting on a hard chair jammed into the tiny space between the wall and the child’s bed.

Many pediatric units employ child life specialists whose job it is to minimize the trauma of being in the hospital for patients and their families. In most cases, they are social workers with training for this specific kind of work. They may hold a child to soothe him or her during a procedure, bring toys or video games into the room, sit and talk with the patient, or show the parents and other adults where they can find a cup of coffee and a snack. These examples are a small fraction of a child life specialist’s tasks and responsibilities.

This is where volunteers are able to make a large impact. Under the guidance of the child life specialist, volunteers do activities with the children-play games, assist with a crafts project, read to them, or just have a conversation-and give the adults a chance to be “off duty,” even if just for a few minutes. Volunteers also free up staff who feel as if they are being pulled in ten directions, or need to tend to critical emergent situations.

My friend’s suggestion piqued my interest. I love children and babies. I love just being around them. I am enchanted by their quirky, singular views of the world, the inventive ways in which they express themselves, and their spontaneous hugs. I was 99% certain that my fondness for children would be stronger than my stranger anxiety. Still, I could feel my familiar doubts and misgivings rearing their ugly heads.

My husband is like the Pied Piper. Children flock to him, whether they know him or not. He has an ineffable, child friendly charisma, and a bottomless supply of “make believe” games. As I watch them all smile and giggle, I don’t know who has more fun-my husband or the kids. He never gets tired of playing with them, never says, “OK, I have to go now.”

I do not have my husband’s golden touch. Sometimes kids ignore me, sometimes it is me who just doesn’t know how to engage with them. I lack the imagination to invent games, or come up with silly things to say that will make them laugh, or jump up and down with glee, or exclaim, “More, more,” or “Do it again.” Certainly, this isn’t true all the time, but comparing myself to my husband, I wondered whether I was the right person for this role.

Driving to the hospital for my first volunteer shift, I was excited and nervous-mostly nervous. What if I inadvertently upset a child, or said something that is against hospital protocol? What if the parents or caregivers preferred that I leave? What if I couldn’t find something to interest a child, or became impatient?

The child life specialist led me to a room where a 12-year-old girl rested in bed, her mother and grandmother sitting beside her. Her face was red; the child life specialist told me she had been crying during a procedure a few minutes earlier. She had an IV in her arm and wore flannel pajamas decorated with small bouquets and pink embroidery around the collar. As I looked at the forlorn expression on her face I thought, “Maybe she is in no mood for me.”

To the contrary. She smiled when I introduced myself, and happily agreed to play some games and do some crafts projects with me. We chatted while she decorated a small purse, and played Connect Four and a card game. She giggled with delight when she showed me how she could make a funny sound with a ball of pink slime inside a jar.

There were no awkward silences. As far as I could tell, I hadn’t said anything to upset her, or that sounded “lame” to a 12-year-old. She enjoyed talking to me, and I was able to keep my half of the conversation going. We were both having fun, and I think I took her mind off her illness and needles and being in the hospital-at least for a little while.

Eventually she grew tired; she wanted to lay in bed and watch a movie that was on the TV she shared with the other patient in the room. Once her mom had her settled comfortably on the pillows and under the blanket, I told her that I was leaving. She turned a sad face to me. I asked her if she wanted me to stay and watch the movie with her, and she said yes.

I couldn’t believe it! She liked having me in the room beside her, even if we weren’t talking or playing. In a relatively short amount of time we had forged a connection. I smiled at her while I sat back down; deep inside I was doing cartwheels.

Walking to my car, I reflected on my experience. It occurred to me that I had learned a number of lessons that day.
—Stepping away from an activity I didn’t enjoy did not mean I was a quitter. It didn’t mean I was selfish. When something’s not working or doesn’t feel right, I need to give myself permission to move on to something else.
—No matter what my age, I most likely will not have tapped into all my skills and talents. There is always the potential to discover something new about myself. I grew a lot as a person by walking through-instead of around-my trepidations and allowing myself to try something at which I might fail. So often my knee jerk reaction is to assume I “can’t do XYZ” or “won’t enjoy QRS.” By taking a risk on something out of my comfort zone, however, I may discover a new interest or hobby that brings me pleasure and for which I am well-suited. Except for singing. That is one skill I will never, ever have.
—It is almost always satisfying to connect with someone on a personal level. Everyone has joy in their life, everyone experiences tragedy and grief. Sharing stories, ideas, and feelings with another human being has the potential to heal, soothe, comfort, teach and learn-not just myself, but perhaps the person with whom I interact as well.

I walked out of the hospital that day happy, my spirits buoyed. I want to feel that way more often, but I realize I am the only one who can make that happen. No one is going to hand me happiness on a platter. At times that may mean trying things I think are “out of my league.” But it will be well worth the effort.

I am interested in hearing your reactions to this post. What experiences have you had with volunteering? Have you been in a situation that was out of your comfort zone, only to find that it turned into a positive experience? Have you ever been surprised to discover something about yourself? If so, what were the circumstances, and how did it affect your attitudes or outlook on life? I would be delighted to read your thoughts in the Comments section.

As always, thank you for reading this blog.

Be Kind…Be Patient…And Smile

When I was diagnosed with lymphoma in November 2010, I made a promise—to myself, to G-d, to the universe. I vowed that if I were to make a complete recovery, I would never, ever, ever again sweat the small stuff, or be rattled by petty annoyances. I also pledged to use all my senses to experience life on a visceral level, rather than going through the motions in a preoccupied, disconnected state.

From now on, I would revel in experiences through which I had previously sleepwalked: the warmth seeping into my pores on the first sunny day of spring; the joy and wonder of a baby wrapping her soft fist around my finger; the decadent delight of a food coma brought on by a sumptuous meal; the satisfying crunch I hear when walking through piles of dried leaves on a chilly November day; the consuming love I feel when both my boys are home and the entire family squashes itself on the couch to watch National Lampoon’s Animal House (or some similarly silly movie). Cancer had slapped me upside the head and hollered, “I hope now you realize what’s really important in life.” I had no doubt I would straighten up and follow those instructions.

I’m sure you can guess what came next. Once my doctor declared me to be “cured,” I went back to my former life, in more ways than one. I could go out and run errands because I no longer had to worry about being exposed to other people’s germs. I could eat salad and fresh fruit again. I didn’t have to go to the hospital every day for radiation treatments. I could get manicures and pedicures, and go to the dentist (yippee!). Eventually I could walk around without a cap and not resemble an egg.

But it wasn’t just the rhythms and activities of my daily life, that reverted to the way they had been before a routine CAT scan showed a misshapen lump growing under my left arm. Little by little—like an icicle melting as the weather warms–my outlook, my attitude, and my ability to tolerate inconsequential irritations returned to their pre-November 2010 state. I became angry when the cable guy was an hour late and called the dispatcher, saying awful, condescending things to him.  When we went to see Hamilton, and the understudy (who by the way was excellent) was substituting for Lin Manuel-Miranda, I fumed for the entire show. Instead of being appreciative that I had hair again, I cursed its frizzy texture. In fact, I hadn’t learned much from my life-threatening illness.

I recently made the acquaintance of a young woman named Aubin Mandel. She was diagnosed with esophageal cancer on October 27th, 2016. Aubin is 37 years old and had become engaged shortly before her diagnosis. This past winter, she underwent five rounds of chemotherapy and 28 rounds of radiation. On February 14th of this year, she had major surgery. Two months later, in April, they found a new mass on her liver, later diagnosed as stage 4 metastatic cancer for which she is currently undergoing another round of chemotherapy.

Aubin is remarkable in many ways, not the least of which is her optimism. She recently wrote a piece that she has graciously allowed me to share with you:

“Be kind. For everyone you meet is fighting a battle you know nothing about.”

This quote really resonates with me, and is something I try and do everyday. Everyone leads a different life with different struggles. I believe we are all struggling in some capacity and I know for certain that we will all face adversity and hardship in our lives, some more than others.

I have been able to keep my hair, this round of chemo and the last, and I look relatively healthy. I hear it all the time: “Omg. You would never know!!! ” I am extremely grateful for this, for my own mental strength, to not be reminded every single time I look in the mirror, and for being able to go out and face the world and not be looked at and treated as “sick.”

From the outside, for people that don’t know my story, life looks pretty darn easy, yet nothing could be further from the truth. Life is difficult right now. I struggle, I feel terrible for weeks at a time, I get sad, I have sleepless nights, I am scared, I am confused, I get angry with life and for everything I have had to go through, and for everything that has been taken from me. A lot goes on behind closed doors that most people know nothing about. And this is true for ALL of us.

“We have NO idea what it took for someone to get out of bed in the morning, to look and feel presentable, and to face the day.”

Be kind and good to those around you. The taxi driver. The waitress. The barista. The person in line in front of you. Your spouse. Your friend. Your mom. Have patience. Be understanding. Be compassionate. And, smile. We all have the ability to bring light and energy into someone else’s day. What a powerful thing.

“We cannot change the cards we have been dealt, just how we play the hand.” I am beginning to embrace my journey when I view it as a learning tool for myself or an inspiration for others.”

I am thankful everyday for the people that show me kindness. ❤️🙏🏻

Round 4, here we go!!!!

I have read Aubin’s powerful words again and again and again. They inspire me, as well as cause me to reflect on myself. My friends and I often bemoan the fact that we are getting “so old.” We wish we were teenagers, or back in college, or new parents enjoying our sweet little babies. We want to look young and feel young, be attractive and energetic. Truthfully, youth is beautiful. However, thinking about Aubin reminds me how vain and foolish and superficial these yearnings are–and how lucky I am simply to be alive.

Aubin embraces everything in her life, both the good and the awful. For me, the takeaway message is this: When you spot a new wrinkle on your forehead, or turn away from the mirror so you don’t have to see the skin under your arms sagging like an empty pouch, don’t beat yourself up. The paunch many of us now have, courtesy of time and gravity, is not a calamity. In fact, we are in a way fortunate to be saggy and have cellulite and gray hair, as the following quote reminds us:

“Do not regret growing older. It is a privilege denied to many.” (Anonymous)

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To end on a lighter note, in my last post I promised to “translate” the acronyms in the sample conversation at the end of the post. So here we go…SFLR: Sorry for late response; AFK: Away from keyboard; NP: No problem; WU: What’s up; NM: Not much; CYT: See you tonight; SLAP: Sounds like a plan; GR8: Great; GTG: Got to go; POS: Parent over shoulder; TBC: To be continued; TTYL: Talk to you later. Thanks for reading.