When you come to a fork in the road, take it. — Yogi Berra
It’s fall now. Peak leaf season, beautiful by me and I’m sure by your old house, too.
Tonight is Game 1 of the World Series and – guess what? – The Mets are in it! I know you’d be glued to your TV rooting for them; they really have a fantastic team this year. I wish you were still here so we could talk about their chances (I think they’re good!). I miss hearing the excitement in your froggy voice when you discussed the things you enjoyed the most.
Some other developments since you left us: First off, because I know you’d ask this first, E is doing really well. She looks and feels fantastic and is growing like crazy now – more than three inches in the last six months. We had a little blip late spring, but in her last round of tests her inflammation number was way down – to normal levels! So that’s been a huge relief and she’s having a great school year so far. Seventh grade is for real, but she’s even taking all the additional homework in stride (most of the time).
B and I finally got married. I know in the beginning you didn’t know what to make of him. It’s funny that, though you were gifted in your work, you helped so many people navigate their inner worlds and overcome their struggles, I think you never quite understood shyness. Didn’t know what to make of it, thought it was more than what it was, had to be some sort of underlying thing. I guess everyone has blind spots. Anyway, I think B was growing on you the last few years, as he tried to open up more and you tried a little harder to get to know him. So I think you would have been happy and had a good time that day; at least, I hope so.
Mostly things are moving forward in a positive way and I’m hopeful about a lot of things. But as we round the corner to the anniversary of your passing, I still find myself not quite believing you’re gone. Sometimes you show up in my dreams, in such an everyday way that it takes me a moment to get back to reality, that there is no more every day with you in it. And despite the problems we had, and the gulf that remained between us (smaller than what it once was, but still there), that feeling –- the knowledge that you’ll never be here again –- it still hits me like the hardest sucker punch. I’m sure in time it won’t hurt so much, but I’m not sure when that time will be.
So yeah, Dad, I thought you’d want to know that tonight’s the World Series. Lets Go Mets! I wish you were here to see this. But I hope they win and I’m imagining you cackling and cheering them on. The old man who was once a boy from Richmond Hill who loved the Brooklyn Dodgers. Who waved to Jackie Robinson and he waved back.
Love you, K
Early January is a notoriously depressing time of year. There’s the post-holiday mood dip; the lack of warmth and sunlight; and the get-back-to-work frenzy, none of which spell joy for many of us. I, for one, hate winter. Always have. This time of year, I have to remind myself I live in a Northern town for the other three seasons, all of which can be spectacular. I don’t partake in many winter sports, except occasionally ice skating, mostly because of my iceberg feet. They won’t fully warm up until June, which I am eagerly anticipating.
In my mind’s endless dance between realist and optimist, I take solace in the fact that the days are getting longer, that in a little more than two months’ time, the first signs of spring will emerge. I try to get outdoors and take nice walks with my dog, Nadine, when it’s not too frigid out. She has always preferred this time of year; with her furry, black coat, she bakes in the summer sun. My “Winter 2014” Spotify list alternates between sad and upbeat tunes; the sad to immerse in the winter vibe, the joyful to snap me out of it. These tricks work only so well to keep the melancholy at bay, but they’re better than sticking my head under the flannel sheets until someone wakes me up to tell me I made it, it’s April. (Not that I could do that, anyway. But sometimes I’d like to.)
Always this time of year we think about the year that was. For many of us, 2013 was a hard one. For me, too. I lost an old friend, quite suddenly, in June. He was 45. Aside from the grief of this loss and feeling for his family and closest friends, it was yet another reminder that none of us has a guaranteed shelf life. His mass card sits by my computer now; his spirit—loyal, funny, always cheering his friends on—a reminder to believe in myself, because that’s what he would say to me right now, if he could.
Work progressed on my impending divorce—now nearly six years in the making. Lawyer 2.0 got things moving and convinced the judge to rule in my favor. It took three hand-wringing court dates to get there, and too much paperwork, but I got what I wanted: custody and child support. But it is still not final, we still need final judicial review/approval. I’m told that will happen by the end of January.
E’s pain reemerged, and her second colonoscopy revealed the continuing presence of widespread inflammation. A major change in treatment was needed, and we were able to take action immediately without changing any of her summer plans. This worked, but only until September, when the pain returned with a vengeance, just in time for the start of school. She lost nine pounds and missed the whole first week, only to return anxious that she would not catch up. (Of course, she did. Kudos to E and to her teacher, who was able to calm E’s nerves and get her into the mix immediately.) To stem the tide, a 20-day, low-dose course of the dreaded Prednisone was added—my last resort. Meanwhile, the doctors rejiggered her treatment plan. By December, E was much improved physically and emotionally. The trial and error of the last few months had paid off.
As I look back to 2013, there was pain. There was frustration. And worry. And sadness. But there was also progress.
I miss my friend, and am sad we didn’t get to see each other these last few years. But I will not forget him, and I’m choosing to use his memory to inspire me to be the best me I can be: empathetic, kind, capable, fun.
I am nearly divorced now. It is a matter of weeks. Now I can focus on my future with B. We hope to be married soon.
E is getting better. There’s a chance that this new course of treatment will keep her in remission for many months, perhaps even years. I toe the line between hopefulness and realism, while continuing to educate myself on what else can be done to keep her healthy. And fundraising for a cure. I dream that within her lifetime, and maybe even in the next decade, Crohn’s disease will be curable. It could happen.
It’s January. A time of year I truly despise. But after a hard year of challenge, change and progress, the fog is lifting. Icy toes, polar vortexes, dirty snow—they’re not bringing me down. I’m looking forward. Maybe all my dreams won’t happen in 2014, but we’re getting closer.
In case you missed this plot point, it’s the most wonderful time of the year! Christmas, that most revered of holidays, is upon us. It’s time for eggnog (yuck) and Yuletide (what’s that?) and lights (multicolored? or white?) and decorations (illuminated fawn, no blow-up Santa), trees (wow, that’s big) and exuberant children. And presents. Lots and lots of presents.
I’ve had Christmas envy my whole life. Growing up, I wanted to be Catholic: There was the beautiful stained glass, there was good music—in Latin!—and there was CCD, that mysterious after-school activity that took out many of my friends every Wednesday. My mom barred me from midnight mass until my senior year of high school, for fear I would convert.
Alas, no such transformation would occur, and many years later, I remain the lame Jew I always was. But through marriage, almost-divorce and now in my new life with child, almost-husband and almost-stepchild, Christmas is alive and well, and living in my house.
To be fair, we celebrate Hanukkah, too. But it’s not the same thing. Growing up, Hanukkah was a holiday to light candles, say a quick Hebrew prayer (poorly), get a nice gift the first night, skip a few nights because you forgot, and get some socks the rest of the nights. It was fun; it was festive. But it was not Christmas. We’ve kicked it up a notch now, and the kids love lighting the menorah. But it’s still not all that big a holiday, and I’m told it never was intended to be.
So now I get to join in all the fun of the big one. And mostly, I dig it. But sometimes I do feel guilty, like an Xmas impostor (see, right there: B, the almost-husband, informed me a few Xmases ago that you really don’t use ‘Xmas’ in cards. And you DEFINITELY don’t say ‘Xmas’. That’s only for labeling boxes. OK.)
When we do our annual pilgrimage to the farm for the Christmas tree, each year I try for the little one in the corner, as if a smaller tree would make it OK, would keep my beloved, deceased Grandpa Ilo from hitting me with a disgusted “Aaaaaach!” from on high. It never works. Real Christmas celebrators always, always want a big, healthy-looking tree on which to hang the tinsel and lights and myriad, often breakable decorations. So every year I am outvoted.
Then there’s Santa. No one told me the rules about Santa, so I kind of winged it. Now I have a personal relationship with the big guy—when E has had issues or questions, I can summon him at will, and I get answers no one else can hear, even this time of year, when he’s super busy. You wouldn’t think an impostor like me would have this kind of access, but maybe that’s just another Christmas miracle.
So tonight we will make cookies and leave them out with a glass of warm milk (I tried to point out to E that the milk won’t stay warm by the time S gets here. She looked at me dumbfounded, like I had five heads. See, I really don’t know what I’m doing here.)
And tomorrow morning, the kids will wake up way too early, see the presents Santa brought, and wake us up, excited beyond measure. And for what will take one-quarter of the time the wrapping did, they will open their presents with unbridled joy.
Tomorrow morning, they won’t be two kids grappling with chronic disease (E) or being on the autism spectrum (K). They’ll just be two happy, happy kids. And tomorrow morning, we’ll be the parents of two happy, alive children, though our minds will undoubtedly slip to those whose Christmases will be altogether different. And we will know how lucky we are.
Merry Christmas to all.
. . . my daughter, E, then age six, was diagnosed with ITP, a rare blood disorder. This photo was taken that night, as she was wheeled from our local ER into an ambulance that would take us to Westchester Medical Hospital, our home away from home for the next seven months. Three years, dozens of hospital visits and overnights, a plethora of medications, and several doctors later, her ITP has stabilized. But before we had a chance to fully celebrate this news, this past spring, an underlying condition, Crohn’s Disease, has emerged as the bigger threat to her return to good health.
Before December 5, 2009, I never understood how people who experienced a life-threatening illness—either having it themselves or being caregiver to an afflicted loved one—would say they were grateful for what it did to them. Now I do.The hope is that when something really bad happens to you, you learn from it, and hopefully evolve into a better form of you. I think we both have.
Here’s what I’ve learned from all of this:
1) Life has lots of good and bad. Life is not about fairness. Or God, for that matter. God didn’t do this to E. Sorry, I just don’t buy it. If there is a God, she doesn’t micromanage. Shit really does just happen.
2) If you get stuck in the “Why?” you can never get to the “What do we do?” That said, it’s important to take the time to grieve and process. But not live there; move on.
3) The Caregiver’s Guilt–why couldn’t I take the hit instead of her?–serves no one. The caregiver’s job is to be strong.
4) You can’t dig yourself out of a hole if you can’t get past the hopelessness. If that’s where you are, get help. As my doctor said to me,”The mind is not equipped to handle this much stress for this long.” And yeah, sometimes that means meds.
5) Caregivers need to do whatever it takes to heal themselves, sans guilt. In my case, it was a few months of happy pills, followed by continued practices like therapy, acupuncture, hiking, deep breathing/yoga, blogging/other venting via social media, and time with family, friends, and B, my partner in love and life.
6) Celebrate the good moments. Nothing like a health crisis to teach you that you can’t take life for granted, and that every pain-free day, every joyful new experience, is a reminder that life is about the now. You get through the bad days so you can have better ones. And then relish them.
7) It’s an honor to be the caregiver. Having someone trust you with their life, their well-being. I wouldn’t want it any other way.
8) Love is everything.
Today is one of those anniversaries you never forget. On December 5, 2009, one month after my 40th birthday, my daughter E was diagnosed with ITP.
To say our lives have not since been the same would not be overstatement. Still not “recovered,” E is so much better than she was when the ER doctor at Vassar Bros. confirmed his “worst-case scenario” diagnosis, her platelet count at an alarmingly low 3,000 (normal is 150,000 to 400,000) and we were rushed via ambulance down to Westchester Medical that snowy evening to receive her first of many emergency infusions.
We’re in a far better place now. E, now nearly nine, for the most part feels and looks fantastic these days. We are optimistic that she will continue to improve and yeah, maybe even beat this thing–or at least live with it on her own terms.
But it’s the anniversary of a very important day in our lives, and so I must reflect. It’s what I do. Writers write. I write about her illness in part for me–yes, it’s supremely cathartic–but also as a way to get some honest thought out there about what it would be like to go through something like this. As I’ve mentioned before, I do not offer advice. I offer candor, a look inside this world. I hope in writing about our struggles, our story is empathetic–to anyone who has or will have to go through anything similar. That is my intent. Sometimes when you put your innermost thoughts out there, it can ameliorate the shame or embarrassment and enable others to express what’s inside them, or at least find peace. I offer these thoughts to anyone who wonders what it would be like if one day, you woke up and suddenly your child was sick. Very sick. Hopefully that day will never, ever happen to you–but if it does, I know you’ll get through it. So I write to offer hope, too. Hope is a beautiful thing–like love, I’ve learned first-hand that we can’t really live without it.
Life-changing events like this, for me, are experienced through three lenses: snapshots (the imagery of vivid moments), time (sometimes slow motion, sometimes fast forwarded, sometimes out of sequence, a la “Pulp Fiction.” Often not linear, because hey, that’s just how I roll) and deep breaths–the moments you step back, close your eyes and try to absorb the salient lessons all of this reality should be offering you.
At two years in, here are some of the visual memories I have of our first few weeks:
1) This day two years ago. E woke up with blood on her pillow. That happened the night before, but not as much of it, and I chalked it up to the dry heat. (We had just started running the heat in the house full force, which had resulted in prior bloody noses. Though not like this.) On this Saturday morning, however, with a flash of horror I noticed unusual tiny pink dots covering both of her shins, along with a series of bruises. I brought B, my now-fiance, over to look at her legs: “What’s that?” I asked him. (He’s very knowledgeable about most things and it takes a lot to freak him out.) He didn’t know, but agreed it was strange and she needed to go to the doctor. The rest of the day was a blur of increasingly horrific details–the karate testing where my little dynamo could barely manage a front kick; the weekend after-hours clinic where the doctor had no idea what she had, but told us to get a blood test at the nearest hospital; the drive to the local ER through the first snowfall of the season, the longest 15 minutes of my life; the four nurses it took to hold E down to take her blood, the horror of her shrieking; the confirmed diagnosis; the hour-long ambulance ride down to Westchester Medical’s Maria Fareri Children’s Hospital, just E and me, the way it would be for so many of our hospital trips; the two days it took to get her levels back up, only to drop again a week later.
2) My solo train ride home. Not prepared for an overnight hospital stay, and needing to get back to take care of the dog and get showered/changed, etc., the next morning my ex took a turn for a few hours as I returned home by train to get a quick break and drive back with the car for my second overnight stay. (His stays at the hospital were far, far fewer than mine, which was partly my choice and partly his desire not to be there. Enough said.) On the platform in Tarrytown, more than 24 hours before my first wave of fear that something was wrong with my daughter, for the first time I allowed myself to cry. Not sob. Cry. Primal, from the gut, unrelenting waves of sorrow. Finally by myself, not needing to be the strong one for E, I let it out–the whole ride back.
3) Eight days later, our return trip back to the hospital. Having now read up on ITP, my hope was that this would go away as quickly as it had come, as it did with many children E’s age. But less than 10 days later, her levels had dropped precipitously and we were back at Westchester for another overnight stay. Little did I know that this would be our pattern for the next six months. The doctor sat me down, informed me that he wanted a bone marrow test, “To rule out anything more serious.” “You mean, you’re checking for leukemia, right?” I asked. “That’s right,” he said. The next morning, she was wheeled down for the test. I was with her, watched as they finally were able to calm her enough to put her out. The nurse–a pretty Russian of about 29–made the mistake of telling her they were going to give her something to put her into a “nice sleep.” E didn’t like that idea at all, made me promise they wouldn’t. When she was finally calmed down and the medicine was administered, I watched her stop mid-sentence, her eyes rolling back. Then I was quickly ushered out of the room to wait. “It won’t be long,” the doctor said–“15 minutes.” Nearly an hour went by–not a process guy, this doctor didn’t get me the buzzer so they couldn’t find me, even though I remained in the waiting room the whole time–and finally I was called in to the recovery room. “It’s ITP, no sign of anything else” the doctor said as he breezed by us. When E awakened, she was mad at me for not keeping my promise and allowing them to put her out.
These are just some of the early scenes we’ve shared these past two years. And while I don’t know what’s coming next, I’ve gone from “not jinxing it” to upholding a decidedly hopeful outlook. She is doing great. And no matter how difficult it’s been, we’ve been together on her road back to good health, determined to find our way back to the lives we once had.
Today, I am grateful. My heart swells with joy as I watch her on the ice skating rink Monday nights–something she never could have done two years ago. Though we can’t say this is fully behind us, where we are is a wonderful place to be. It’s great to appreciate what you have, a lesson I only fully learned from this experience.
“Even more important than the warmth and affection we receive, is the warmth and affection we give. It is by giving warmth and affection, by having a genuine sense of concern for others, in other words through compassion, that we gain the conditions for genuine happiness. More important than being loved, therefore, is to love.”–Dalai Lama
A few weeks ago, on the way home from a day of meetings in New York City, I got a text from my fiance, B: “Just got off the phone with my mom. Dad is in ICU. Doesn’t look good right now. I am going to start looking for flights.” The next day we were off to Orlando, and the next two days were spent mostly in the hospital, where he was suffering from congestive heart failure and pneumonia.
That wasn’t the way I had wanted to meet his parents. But it is becoming increasingly apparent that life has a way of doing its own thing, often without your consent. There was his dad, sedated and hooked up to a ventilator and a plethora of machines monitoring heart rate, blood pressure, oxygen levels. And there was his mom, at his side, where she had stayed for nearly two days since he had coded and it took nine minutes to revive him.
I’ve spent quality time in hospitals these past few years. Any fear that I may have had before has long since disappeared since December 2009, when my daughter, E, was diagnosed with ITP, a rare blood disorder in which her body’s antibodies attack its platelets. For nearly a year we spent at least one day a week at one of three different area hospitals. In the first six months of her illness, there were many, many overnight stays, as sudden drops in platelet counts require immediate attention that goes beyond day- clinic hours. So when I came to see B’s dad, I was thinking as much about his mom and sister as I was his dad’s condition. I know how it feels to be the one sitting by the hospital bed. Waiting. Hoping. Praying. Trying to be strong.
Who cares for the caregivers? Somebody has to.
Here’s what I learned from being the one on the front lines: 1) A friend once told me, “People want to help you so let them.” I have always had a hard time taking from others–I’m a chronic giver, to a fault (see blogs on failed marriage)–so this idea is innately difficult for me. But exhaustion has a wonderful way of wearing down your pride. I accepted kindnesses from friends and family. I leaned heavily on my loved ones in all ways: B, my mom and brother especially. I was lucky–there was no shortage of support for me or E.
2) Replenish yourself. I have custody of E so we are together most of the week. But Sundays she is with her father, and this was my day to regroup. I overcame my guilt that I was supposed to be by her side 24/7 and took time for myself. Many a Sunday B and I would go hiking, go out for brunch, go swimming in a nearby lake, take the dog out for a walk. Sometimes I wouldn’t talk about E and her illness, sometimes it was all I could talk about. Our Sunday rituals replenished me so I could continue to be strong for E and whatever the next week would bring. (Side note: There’s nothing like a life-threatening illness to test your relationship. Our bond only strengthened; at long last, I had picked a great guy who was willing to stick with me no matter what.)
3) Get help when you feel you might be slipping. Some people like support groups, and I’m sure they can be very healing. In my case, since E’s illness is rare, the only support groups were online. I tried it, but reading about other people’s experiences was disconcerting, often discouraging to me. I saw a therapist, which helped for a while, though as time went on our bi-monthly sessions increasingly devolved into cry-a-thons.
After five months with little progress and no clear path toward recovery, I knew I was slipping into depression when her former doctors mentioned splenectomy and part of me thought, “At least then this might end.” Suddenly my mind wasn’t thinking clearly anymore. I went to my doctor instead, who confirmed that I was, in fact, suffering from depression. He explained that the human mind is not equipped to handle constant stress for more than a few months. After that, it breaks down. I was put on a three- to six-month course of antidepressants, which lifted my mood enough for me to get off of them after three months–my goal. (I’m an anti-pill sort by nature.) But they allowed me to think clearly again and regain a more hopeful outlook.
Who cares for the caregivers? First, we have to care for ourselves. But then we need to reach out and get the help we need so we can keep giving. And one day, if you find yourself in this role, reach out to me. I’d be so happy to help.
“Was it love, or was it the idea of being in love?”–Pink Floyd
The tag line for this blog, “confessions of a self-reforming loser in love,” was inspired by a conversation with my brother about a year and a half ago. We were en route to my old house so he could pick up the plethora of psychology books left to him by our cousin, Rachelle, who passed away a few years earlier. The house was on the market, I was clearing it out, and Danny was in town for the weekend. He had met my new boyfriend, B, at a dinner the night before.
I asked him what he thought. “He seems like a great guy,” he said. Then silence. Deafening silence. “And?” I prompted. Pause. “Just don’t rush into anything,” he said. Umm . . . OK. “What do you mean? ” I probed. He continued, “You’re a devoted mother, a smart woman, and you’ve accomplished a lot in your career.” Pause . . . “But, well . . .” Pause. “You don’t exactly have the best track record when it comes to relationships.”
DONG! Went the anvil. (It was a time of many anvils.) You can tell an understatement when you hear one. So being an unrelenting truth-seeker who never knows when to leave well enough alone, I continued my quest: “So what you’re really saying is, you think I’m a loser in love.” He replied, “Umm . . . yeah, I wouldn’t put it in those terms, but I guess that’s basically what I’m saying.”
You know in the cartoons where Wile E. Coyote gets pissed and he’s got the steam coming out of his ears? I became Wile E. I tried to defend myself, but it was no use. To the outer universe, his version of me was dead-on: For nearly 40 years, I never seemed to be able to get the love thing right. Picture my face, in the Love File, with big, red, capital letters stamped diagonally across: “LOSER!” No, I hadn’t gotten it right when I was supposed to, as my brother had, wedded at 26. Harrumph. Easy for you to judge, you up there on your high horse, I thought, steam spewing. How’s the view from your happily-married-the-first-time-to-the-right-person perch?
The “new me”–the evolved, therapized version, the one who ditched her bad marriage–was annoyed by the assumption that just because I hadn’t gotten it right didn’t mean I wouldn’t this time. Didn’t I get any credit for learning something, some points for personal development (my brother is, after all, a psychologist)? OK, maybe I was the girl who cried love so many times before, only to see or make it fall apart months, sometimes years later. But did that mean that it would never come together for me? Just because I was a loser in love, did that mean I was destined to remain so for the rest of my years?
As luck would have it, no. While I am no expert–in fact, quite the opposite–I do know this: Love shows up when it damned well feels like it. Love is not about shoulds or proper timing or what’s best for you at this very moment in your life. It doesn’t know its place. Sometimes it hides or runs for cover. But your heart knows when it’s there. And when it finds you, do yourself a favor and let it in.
I found B in the best of all possible places: online. It was Thanksgiving week 2008. The flirtation with the old friend having run its course, I felt ready to get out there and meet new people, despite the fact that one of my friends was adamant that I wait two years before dating. (Two years??? My therapist disagreed. He believed I had been sleepwalking through my marriage for over five years, so there was no harm in getting out there now. I figured he knew more. Besides, I liked his answer better.) The last time I was single in the mid-1990’s, online dating was in its infancy; it seemed to be the land of the lost. But since then, a number of people I’ve known have happily found their partners that way–and I would not describe any of them as desperate or even lonely hearted. I was willing to give it a try.
When I saw his profile, again, the anvil. But it wasn’t the photos that drew me in like quicksand–the one on the opening screen was black and white and, though I liked its artistry, it was hard to make out his features. No, what got me was his profile description. He wrote beautifully; in just a few sentences, my heart took in that he was sweet, funny, smart, humble, a devoted dad, and kind of shy. We had common interests–hiking, photography, reading, movies, animals. His son was a year older than my daughter, and he, too, was separated. He sounded so . . . sweet. Adorable. Someone I really wanted to meet. (After which I clicked through to the other pictures. Then I really wanted to meet him.)
So I sent him a “teaser” e-mail. But I didn’t hear back. At least, I thought I hadn’t heard back. I was disappointed, quite. A couple of weeks went by, and I decided to sign up for a six-month membership. It was then that I saw his reply, which came soon after I sent the teaser. I didn’t realize you had to sign up for the service to get the reply! Doh! I wrote back quickly, excited and nervous. Meanwhile, he had just about given up on online dating and was about to cancel his membership, but decided to check in one more time. And there was my reply to his reply in his inbox.
The rest, it seems, is history. We had a magical first date on Boxing Day and then didn’t see each other for nearly two weeks, because I was off to Florida the next day; upon my return I learned I had a double ear infection and was sidelined. But while I was away we spoke every night–he was my New Year’s Eve date via cellphone–and when I got back we spoke or e-mailed every night, and by the time our second date happened, I was pretty sure I was falling in love.
What makes this love different from the others? I’m older. I’m smarter. I’ve made enough mistakes by now, and yes, I’ve learned from them. And I decided that this time, I would look for someone who would love me for me, and who I would love for them. No molding, no putting anyone on pedestals.
As I write, it’s been nearly two years, and I have no doubt that B is the love of my life. The more time we spend together, the more certain I become. Our relationship was tested rigorously this past year with E’s health crisis, and time and again, he was my voice of reason, my rock. His support was unwavering. Lesser men would have said sayonara a few months in. Not him.
So can the Girl Who Cried Love actually find the real thing? Yes, she can! And she did. Even my brother now agrees.