Tag Archives: Illness

Thankful for Human Kindness

26 Nov

— and Stephanie Robinson of Oxford

 

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Friendships That Are Gifts

19 Oct

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Every now and then you are lucky enough to come across someone who will be your true friend. Someone who will understand the same jokes. Someone who you can laugh with until your stomach hurts and tears roll down your cheeks. Someone who will get you. Nearly 13 years ago, I was lucky enough to come across my beautiful friend, Beth.

Not long after that, when she was only 37, she called me to her home on a warm spring night. We sat on the porch and sipped iced tea and she told me she was diagnosed with breast cancer. It was the first step in a heartbreaking chapter of our friendship.

Beth, loved by innumerable people besides me, was strongly supported by our local community and her larger network of family and friends. I had never known a friend with cancer and I had no idea what to do for her first. I began by pouring my heart into cooking. Every Wednesday night, for as long as she was undergoing treatment (which, incidentally, was many months) I made dinner for Beth and her family. Throughout this time, I noticed her lose her hair, her eyebrows, her eyelashes. I listened to her talk of sores in her mouth as she sucked ice pops, and lament that she was forgetting things from all the chemotherapy. I saw her family rally around her. And I saw her rally around her family. And most important, I watched her fight each day, talk relentlessly about the future, and continue to live her life positively. She was simply incredible.

On her final week of treatment, and the last time I delivered dinner to her family, I brought her a bottle of wine. I worried that such an open display of revelry might superstitiously invite bad luck, but 5 years after Beth’s diagnosis, I was fortunate enough to bring her pink champagne to celebrate the important milestone she finally reached.

What once consumed Beth and her family (and a large part of my mind as well), has become merely a part of her past. She does not dwell on what happened to her. She looks forward. She is happy. She is loved. She continues to live her life positively. She is still simply incredible.

Several months ago, Beth asked me to join her on the Avon 2 day, 39 mile walk across New York City. Without even thinking about it, I said yes. First, I have a problem saying no, and second, I would do anything for Beth. And then I panicked. 39 miles is a major undertaking that required 12 weeks of training, 2 pairs of sneakers, 3 new apps, a minimum fundraising goal of $1800, a weekend away from my family, and countless blisters. What I received in return, however, cannot be itemized. Walking through the streets of the city in which I have grown up, in which my parents have grown up, in which my grandparents have grown up, was nothing short of momentous. I walked past the area where my great grandfather owned an antiques store on the Lower East Side, the theater where I saw my first James Taylor concert, the apartment building I lived in during law school, the library in which my husband and I met, the street where my mother and I picked out yarmulkes for my wedding, the hospital where I delivered my first baby, the spot we used to stroll him to for Sunday brunch, the courthouses in which I spent so much time litigating. I walked through my family history for the past four generations. I walked through my life.

And then I realized, maybe that’s the point. Maybe when you walk through your whole life, your whole life comes back to you. Washed amid a sea of pink, our team held hands and crossed the finish line. I took so many pictures throughout the two days but my favorite one, by far, was the one captured by my husband, solely because of the pure glee you can see in my friend Beth’s smile.

Beth’s whole life has returned to her. She is complete. At the end of the walk, I kissed her and said “your friendship is a gift.” Because it is. I should know. I have been treasuring it now for almost 13 years.

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More pictures from the walk:

lincolncenter brooklyn bridge lowermanhattan dumbo water randalls man chinatown baseball china radio horse flatiron  flatiron2esbfamteam3theend

Reservoirs of Hope

6 Oct

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I posted optimism in haste. I understand, I am optimistic by nature. I am also superstitious, however, and that should have given me pause. Regardless, I was hasty and we have seen immeasurable sadness.

My son returned to a fetal position on the floor, unable to contort himself enough to not feel pain. He winced, he punched pillows, he cried. I did too. “It’s not fair!” He screamed. I told him he was right. It was not fair. Life often is not. He is only 12. I wish I could know the pain he is feeling. I wish I could experience it so I could commiserate with him. I fear the pain I feel as a mother might be worse. I hope it is because I am abler to weather it than he.

He rearranges himself constantly, twisting around within and atop the quilt, like a giant stress ball but regrettably ineffective. Another very sad week to enter into the calendar.

“Tomorrow will be a better day” I tell him, just like my mother used to tell me when my day ran afoul. Each night I go to sleep an empty pot left beneath a leaky ceiling, allowing hope to collect in time for morning. Each morning I wake with expectation, yet it is always the same, if not worse. The pain still there, the agony unbearable for a young boy, and too much for this mother to witness. At what point do my empty promises reveal me to be an optimistic liar to my child. I cannot keep telling him that “tomorrow will be a better day” when it just does not come to fruition. Perhaps he should be more like his father: an over-prepared realist. Ready for and expecting the worst and anything less will be tolerable and even welcome. Then again, I’m not sure I could live like that either.

“Just sit here and look out the window” my mother used to tell me when I had a nightmare. It was also what her mother used to tell her to remedy the same situation. Inevitably, I would stare out the window and become distracted enough with whatever I may have noticed to have lost track of my nightmare. I wish I could stare out the window long enough right now.

“Just sit here and look out the window” my mother tells my son. But he cannot sit upright long enough without pain to complete this task. He again curls himself into a ball and weeps.

I wonder if this little boy knows how much he is loved. How much the lives of those who love him are thrown off by this spell. That his mother goes to sleep waiting to refill a reservoir of hope by dawn. That his brothers might be a little bit nicer to him. That his grandmother does not sound like herself when she answers the phone. That his grandfather makes frequent unannounced visits just to see how he is doing, just to look at his face, just to kiss the top of his head and rub his back. He is so loved.

Yesterday was the type of day you just do not expect when you wake up, even with a full supply of hope. When you confront a disease, especially one that afflicts your child, and you must contemplate therapies, sometimes none of the choices are good. All medications are accompanied by unfathomable risks and you find yourself asking doctors “is it at least a treatable Lymphoma?” as if that is an acceptable outcome. Simultaneously, compromising your child’s current health is not an option. Pile on the relentless pain and decisions are suddenly made amidst a pressure cooker of love and concern and the need for a young child to simply find some rest.

I refused to allow the nurse to provide a detailed consent, particularly in front of my son. I do not want to know the risks they are required to tell me by law. I do not want to know about minuscule possibilities of terrible things that may await us. I do not want to know about something that might have happened to a lab rat that received 1,000,000 times the allowable dose. I want to see my son well. I want to see his smile again. I want to see him be a 12 year old boy.

Several hours later, following his first IV infusion therapy, I did just that. Now he is at school. He is sleepy, he is concerned, but he is smiling. Today is a better day.

My pot is full.

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Sailing

21 Sep

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We are drifting aimlessly on the sea. The water is so placid even our boat does not create a ripple. We stretch back and let the salty air wash over our sun-kissed faces. We are good.

And in an instant, the sky turns dark and stormy and our boat is upended. We are swallowing the sea water that protected us just seconds earlier. We are desperate to right our boat, to climb back into its safety, to escape this disastrous storm. But it takes time.

This is what it is like to live with a chronic illness. One minute you are navigating innocent waters and the next minute you are laying with your son on the cold tile of the bathroom floor, struggling to find stillness.

Last week, out of nowhere, our boat was toppled. My son experienced what can only be described as “labor pains” for nearly a week. He winced, he cried, he dug his nails into the flesh of his wrists to feel something other than agony. And with each tear that traveled down his cheek, the vise around my heart tightened its grip. I tried to act casual, I cried and told him I wish it was happening to me instead, I tried everything. There is literally nothing I could do to soothe my son, to make it better, to be his mommy.

“Can’t you just hug me and make it go away?” He cried.

Oh, how I wish.

On Friday morning, after a long and very sad week, my son woke up feeling no pain. He later called me from the nurse’s office at school:

“I have good news and I have bad news. The good news is that my stomach feels fine. The bad news is that my wrist bent back in recess and then I fell on it and it hurts a lot.”

“So you have good news. I love you.”

Later that day, my son managed to take his iPhone for a night swim. He called me from his friend’s house in such distress that it was difficult to hear actual words.

“I’m an idiot. I did the dumbest thing. You’re going to kill me. I’m sorry. I’m sorry. I’m so sorry.”

“Are you ok? How do you feel?”

“I feel fine.”

“So you’re ok.”

I told him I don’t care. I told him it’s just money. I told him I’m just happy he feels good. I told him to hang up with me and go be a kid.

When I picked him up that night, he again cried, saying he made a mistake.

“I’m glad you did. That’s how you learn. You will never go swimming with your phone again. I make mistakes, Dad makes mistakes, we all make mistakes. It is part of life and no one gets out of here without making some along the way. And by the way, you mean way more to me than a phone.”

The following day was spent going to Urgent Care and getting X-rays for his wrist. As we drove to the clinic, my son reflected on the broken phone and the possibly broken wrist.

“Yesterday was the worst day, Mom.”

“Yesterday was the best day.”

“No, I mean because of my phone and my wrist. So it was a really bad day.”

“Yes, but you woke up feeling fine and your stomach no longer bothers you. Your phone can be replaced. Your wrist, even if broken, will heal.  These are things that happen to everyone. But you feel good. So it was a great day.”

When the dark clouds gather and the storm rolls in, I worry that my son’s whole life will be like those moments on the bathroom floor: a tiny ship tossed around helplessly in a maelstrom. I remind myself of the things I must believe in: medicine, Hope, and my son. I remind myself that this disease should be the worst thing that ever happens to him. I remind myself of the serene seas in which we have been fortunate enough to sail. And then I look out for those starry nights, the traditional harbingers of the promise of beautiful weather ahead.

The phone was irretrievably broken.

The wrist was not.

And neither was my heart.

And our ship is again floating under a beautiful, cloudless sky, hoping for endless starry nights.

The Greatest Show on Earth

20 Jan

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I never liked the circus.

Even as a child, the format of three rings with three simultaneous acts made no sense to me. What was I supposed to be focusing on and regardless, all three acts were not entertaining. At all. I didn’t buy into the costumes, the acrobatics, the parades. I finally just started to beg my parents not to bring me anymore.

When I got around to having my own kids, I felt obliged to take them to the circus as a rite of passage. It was as awful as I remembered and my kids were not sold on it either. Thank goodness for good taste.

Last weekend I walked my own tightrope as my oldest son was in an emergency room in Massachusetts and my mother was in an emergency room in New York. I have been in this position so many times yet each time it happens it is a shock and I yearn for the luxury of a monotonous existence.

When my oldest son was a baby, he let us know he was ready for a bed by launching himself out of his crib. The next morning he was seemingly fine with the exception of a slight alteration to his usual routine: he danced to The Wiggles but he used only one arm. I could not fathom that he might have seriously injured himself. He was such a champ that we did not even know he had fractured his clavicle until a follow-up x-ray revealed a healing bone. On Sunday, this same son broke his clavicle in two.

Inhale.

When my oldest son was 4 years old, I went to Mexico with my family and my parents. While walking back to the room with my mom to call my aunt, my mother began to have a heart attack. We did not know what it was at the time, and it did not unfold in the typical way in which it is often depicted: a man with left arm pain grabbing at his chest and directing someone to call 911. Rather, it was as if she had a sudden and severe reaction to something she ate, vomiting until it was over. And then she was fine. Until we learned she wasn’t. On Sunday, my mom called me in the morning to tell me she did not know what came over her but she couldn’t stop vomiting. But once you have a history of something kind of terrible, you cannot just crawl back into bed and assume that you have a virus. Thankfully, after an EKG and blood work, she learned she had a virus.

Exhale.

On Sunday, as if not to be left out of the disastrous emerging trend, another son of mine injured his hand and wrist simply while walking in the hall of our home. Nuts. But no broken bones; just a sprain. You try leaving an orthopedist’s office with two wounded boys and not being  looked at suspiciously. I joked with the woman at the front desk, asking if she was going to contact CPS. She just eyed me and went back to questioning my children.

Repeat.

When I was pregnant with my twins, the sonogram technician advised that I was going to be having two more sons. Broken bones was in my future; it was a given. Although you never expect it when you get that call, when you see that dangling arm, when you hear that primal scream that alerts you that something is very wrong, you always know that these things are possible, that they happen all the time and you are not going to be excluded from this club. After all, if I got through this life with 3 sons and no broken bones, I would worry that I was somehow failing my boys.

Aren’t we all performing some kind of high wire act? Teetering between news–both dreadful and wonderful, striking the great balance of life and making careful–extra careful–to keep our balance and not succumb to a mere slip of the foot.  The more we love our people, the more we’re going to be walking that tightrope. Because we care. Because we are lucky.

Maybe the circus is our introduction to life. Maybe by throwing so many things at us at one time, we are learning how to focus, how to zero in on what makes us the happiest, and to filter out all those tricks we see right through. Life is both the Worst Show on Earth and the Greatest Show on Earth and I wouldn’t want to live it any other way.