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A Whole New World

It’s been more than a year since I last posted. A lot happened. Most significant: My mother died. She had stage 4 lung cancer, but it was sepsis that ultimately killed her — sepsis from a procedure to clear a liver tumor.

I was my mom’s primary caretaker and patient advocate for the entire 20-month journey. During that time she lived with us twice. The first time after she had her biopsy and got a PleurX catheter put in. The second time was right before she died. She left my house in an ambulance and never came back.

There’s so much to write about the journey, especially since I didn’t write or talk about it at all during the almost two years she was sick. It was a huge secret as per my mom, so no one knew except the few very close friends I confided in. She didn’t want anyone to know how sick she was, and I honored her wishes. She didn’t even tell her own close friends until the very end.

Today, five months and three days after her passing I am trying to rebuild my life. When you spend every day for 20 months researching and living with a loved one’s cancer, stuff changes. Your life — or at least my life — changed completely, and now that she’s gone, I realize how hard it is to go back to my old life BC (before cancer).

It’s because of this that I feel like it’s time to start telling my story again. It’s time to process what happened — what I lost, what I gained, and where I see my life going — and  I’m going to use this blog to do just that. And yes, I will talk about my kids during this new blog dump. They lived the pain and joy of caring for my mother. They also received beautiful gifts. By living with their grandmother they got to see firsthand how we, as a family, care for those we love, even when it sucks.

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In My Image

It was nearly four years ago that I was injured while on vacation. It’s nearly four years ago that my sleep — which was always pretty crappy — became disordered. I would take forever to fall asleep and then, once asleep, I would wake up multiple times every night. Concussions do that to a person. It took some time and accommodation (blackout shades, water near my bed, lip balm, listening to an audio book, sleeping with an eye cover) but eventually I was able to fall asleep again. My kids, watching Mommy’s elaborate sleep dance, have taken on some of my rituals.

Both girls HAVE to have a glass of water in their room. Their glasses are untouched when they wake up but they must have those glasses. Lip balm was next. Now, the little one has taken to falling asleep listening to an audio book.

I’ve said it before but I will say it again. These kids are like industrial strength sponges. You can tell them whatever you want. They are going to behave as you do. They are molding themselves in our images. This can be good (see, Mommy loves broccoli!) and bad (hello, anxiety!). And they catch on to more than we think. You may not think they see your bad habits or hear your complains and negative messages but they do. Oh, they do.

I am not sure how I feel about the audio book thing and my little one. On one hand, wow, I have never seen her fall asleep so quickly! Listening to an audio book is like flipping an off button in her brain, same as it is for me. On the other hand does a child really need an external off switch? I’m not so sure.

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We are in the midst of a whole house makeover. It started with the floors. My wood floors were really bad — in need of sanding, staining, and a new finish coat. We also wanted to put in wood floors in the kitchen, removing old, outdated tile flooring. Taking up the cabinets (the old floors went under them) and reinstalling them after we did that would be almost as expensive as just buying new cabinets, according to the contractor. His suggestion: trashing the old ones and installing pretty new white shaker cabinets. While the idea of new cabinets was appealing, my old cabinets were in good shape and the granite on top was only a few years old. After much soul searching, we decided to donate them to our local Habitat for Humanity ReStore location.

The process was simple. I called the store, sent digital photos of what we were donating, and they scheduled a pickup time. The morning that they were expected the contractor carried the cabinets and countertop (along with couches, a whole-room humidifier, and our old kitchen set) out of the house, leaving them in the driveway. Soon after two guys pulled up, loaded everything into a truck, gave me a receipt for my taxes, and drove away.

That was a week or so ago. Today, I logged into Facebook and checked out the ReStore page. The first post was a photo of my cabinets. They were in the wrong configuration, but they were there nonetheless! I have to admit I got really excited. Not only would my cabinets go to someone who could actually use them, but the money they paid would go directly to help build a house for someone in need. And I was able to keep a lot of stuff out of a Dumpster. It was a win, win, win situation all around!

That said, if you’re thinking about redoing your home or are about to get new couches or furniture I hope you’ll consider donating rather than just putting your stuff out to the curb. Every little bit helps!

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“I like funny Mommy.”

I am not funny. Some might call me serious. Others might say I am too serious. I might agree. and yet every so often — like a solar eclipse or a leap year — I get the giggles. Everything is funny. I can’t stop laughing. The grosser and more juvenile the topic, the more I laugh. Sometimes, I laugh at things that just aren’t that funny.

Tonight I was hanging out in the kitchen with the kids. The giggles started. My older daughter asked me what her French horn teacher’s name was. Her piano teacher wanted to know. I couldn’t stop myself.

“Tell her that he is in the witness protection program and he changes his name often.” I started belly laughing, to my daughter’s amazement. “Mommy, what is wrong with you?”

“Tell her that he runs around our house spitting at things and we wouldn’t want him to do that at her house.” Then I got up and pantomimed running around the house spitting at things. Then I fell into a ball holding my stomach. The little one, always a lover of silly and laughing, fell on the floor next to me. Even the big one started laughing along. I tried to explain that what they were seeing was like Halley’s Comet, rare and beautiful. Something to enjoy as it lasted.

The big one finished dinner and went upstairs to study. The little one stuck around hoping for more fun. I obliged.

It continued with me asking our Google Home all sorts of crazy questions — about Siri, about singing, about flatulence, about weird things. Then I started impersonating people, talking to Google as the weird guy we used to prank people as way back when. It doesn’t sound like it would be that funny, but we were both convulsing on the floor laughing. Tears streamed down my face and my stomach actually hurt from laughing. And then real inspiration hit. “Okay, Google. Play fart music.”

Google’s answer was a one-hour all-farts-all-the-time recording. Immediately, we both started laughing harder. “Let’s use this to call people,” I said. We dialed my sister first, tacking on *67 so she wouldn’t get our caller ID. She didn’t answer so we left a shockingly loud 20-second fart fest on her voicemail. Then we called my husband, who was still at work. Again, *67. Again voicemail. We left a message with my little one giggling in the background. “You ruined the joke,” I griped loudly. Then it was time to call Grandma.

My mother answered the phone after two rings and listened to the flatulent noises for about 20 seconds before she hung up. I know my mother well enough to hear her frustration and fear in the silence so I immediately called her back, handing the phone to the little one to explain. I didn’t want to get yelled at. My mother told us that she thought the call was one of her neighbors. She was actually very upset! We apologized and hung up. I wasn’t done yet.

My final idea was vetoed by my daughter. “Let’s call a pizza place! I will say, (in a funny accent) ‘I ate your pizza and now this is happening.'” Surprisingly, my daughter vetoed it, saying she didn’t want to get arrested! I laughed out loud, but realized that — despite the fact that I was setting a terrible example — my serious mothering track record wasn’t going to be obliterated by funny mom antics. She still knew right from wrong even if I temporarily forgot!

Later that night as I was sitting in my office finishing a work article the little one knocked on my door and jumped into my lap. “Mama,” she said. “I like funny mommy. Will you be funny tomorrow?” I don’t know, sweetheart. I just don’t know.

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Still Missing Yoga

After years and years of spending my life on a mat, it’s been more than three years since I’ve done an actual yoga class. I have my injuries — and an obscure condition called vestibular migraine — to thank for that.

About three years ago I suffered a nasty, horrible concussion. I got chronic daily migraines from that assault. About seven months after that injury, my chronic daily migraines morphed into chronic daily vestibular migraines. Confused yet? Keep reading.

Our vestibular system is pretty complicated, with our eyes, ears and proprioceptors — little sensors throughout our body — telling our brain which way is up. Literally. The ear has little otolith organs that contain fluid and calcium crystals sitting in what my doctor described as “goopy gel.” Sometimes, for reasons unknown, the crystals get dislodged from the gel and move into the semicircular canal. The brain gets conflicting signals as those crystals, which telegraph position, move all over the place instead of being where they belong. The condition is called benign paroxysmal positional vertigo or BPPV. The end result: vertigo.

I wouldn’t wish vertigo on my worst enemy if I had one. You feel like you are spinning really fast. Your eyes actually see the movement. It’s horrific. And when you lie down or move your head and the crystals move, the vertigo starts up again or intensifies. Anyway, back in March 2015 I was starting to have better days. I remember the night like it was yesterday. I went into my daughter’s room to lie down with her. As soon as my head hit the pillow, the world spun FAST. I spent an uncomfortable and sleepless night, terrified to lie down and feel that horrible feeling again. The next morning I called my vestibular therapist. She had me come in to see her. After putting on goggles that put me in the dark but let her see my eyes moving, she diagnosed me with BPPV and performed the Epley maneuver, manually moving my head to put the crystals back where they belonged. I felt woozy for a few days because, as my vestibular therapist explained, vertigo is noxious for the unconcussed brain. Mine was already working at a deficit so vertigo set me back quite a bit.

That should have been the end of the story, but it wasn’t. My doctors think my vestibular migraines were triggered by those loose crystals in my inner ear. My still-concussed brain couldn’t handle BPPV. What does that mean? For about two years I felt like my world was rocking and moving 24/7. Plus, I had horrific pain, nausea, vomiting, depression, anxiety. Weight starting falling off of me. I spent all my time lying in bed, wishing I would feel better. When I did get out of bed it was to go to doctors and vestibular therapy. Chiropractors. Neurologists. Neuro-opthamologists. Neuro-otolaryngologists. Cardiologists. Audiologists.. Endocrinologists.

I suffered while I made the rounds listing to doctors who said my symptoms were anxiety. Or the concussions. Or hormones. Or — this is rich — it was all in my head. I could barely walk when the condition hit me especially hard, but it was all in my head. Finally, I went to a doctor at the Headache Institute in New York City. As soon as I walked in — holding the walls to keep from falling down — he diagnosed me. He suffers with the same condition. He started me on a preventative med that same day.

So what does this have to do with yoga? I am still afraid to put my head upside down. I am also afraid to roll over in bed or tilt my head parallel to the floor. These things often made the vestibular migraines worse because my system became very, very sensitive to movement. Hence, I no longer do my once-daily yoga practice. This makes me very, very sad.

This, I know, is all in my head. When the migraines were at their worst, moving my head made me feel horrific. My brain trained my body to sleep on my back. I do not toss or turn. I lie down and wake up in the same place. I sleep like a stone. I also avoid too much head movement. I no longer look under beds or under things. I make my kids do it for me. I don’t look up if it means my head will be tilted too far backwards. And forget snuggling with anyone while lying on my side.

This seems to be the last frontier for me — this and going on a boat. I am so afraid of doing anything that will bring back the crushing, horrific feelings. These days I can have multiple days in a row where my symptoms will be minimal. But every so often I wake up and BAM, the dizzy feeling is back. It reminds me how bad it was and how much I don’t want to go back to that place of horror.

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There’s a video of my wedding. My mom’s friend, an amateur videographer, recorded it. On it, he asks my mom how I look. She looks at the camera and says, “great.” Her friend Bob says, “You can do better than that.” My mom pauses, bagel midway to her mouth, and smiles. “Beautiful. Just Beautiful.”

I think that was one of the few times in my life my mother commented on my looks. Since my dad died when I was a few months shy of six it’s pretty safe to say I didn’t get a lot of positive reinforcement about my physical appearance. I was just musing about this the other day.

My little one, who just donated her hair again, was getting off the bus. I couldn’t stop myself. “There’s my beautiful girl,” I exclaimed, barely containing my pride. Soon after her sister got home from school. Big sis also had a haircut. Her hair was blown straight. She was dressed up in a nice pair of pants and a cute top. Again, pride oozed out of me. “Look at my big girl! She’s so gorgeous!”

I’m not sure why my generation is so much more effusive than past generations. I can’t tell you why I can’t control myself when it comes to my kids and why my mother barely said anything. I know she’s proud of me. I know she thought I was a cute kid. I just wish I heard it a few more times over my life.

I start writing this blog post a month ago and couldn’t finish it because I felt like I was being a whiny baby. Wha, wha, I can’t go on a boat. Boo-freaking-hoo.

I decided to finish it now because it’s how I feel. What’s a blog for if you can’t be honest? Besides, I have perspective. I understand that my lack of boating is nothing compared to the months and months I spent in bed, rocking, spinning, vomiting, and wincing in pain. And it’s certainly nothing compared to what other chronically ill people put up with daily. And so…my missive…

Recently, someone on the TBI/Migraine Facebook page I am on asked the following question: What are the things you feel that you have lost since your TBI? More than 131 people answered.

My answer: Friends. A lot of friends. Confidence. A sense of safety. The ability to do yoga, go on a boat, play sports. Muscle mass. The ability to eat gluten, sugar, potatoes, beef. My eyesight (I have convergence insufficiency). The ability to stay up past midnight. The ability to sleep on my side.

Looking back at the list, the loss of the boat should have gone at the bottom. It still tears me up inside, though. Today my family is out on my husband’s new-to-us boat. They are rafting up with a few dozen of our favorite folks. I am here feeling slightly sorry for myself. And angry.

I can’t remember the last time I went on our boat. I could probably figure it out if I looked back in my photos. We always memorialized our trips around the Great South Bay whether we were at Tobay Beach or just hanging out in the cove near 0ur beach club. In fact, I am reminded of those trips weekly since they they often pop up in the On This Day Facebook app.

When someone gets injured or sick they must get over the fact that their lives are different. They are different. I am no longer me. I am the “after me.” And that’s okay. I may never get back on a boat, but I still have plenty of blessings. In the end that’s all that matters.

Raising Independent Humans

Every few months a meme (or a link to a story) gets shared around Facebook. They are designed to tell us, modern parents, what we’re doing wrong.

We help kids too often and do too much. We coddle and helicopter, creating kids who can’t handle anything — who are entitled, have thin skins, and can’t deal with adversity or disappointment. Our overcompensation leads to a lack of knowledge, too. Kids can’t boil eggs or find their way from Point A to Point B. Even worse, they’re being set up for a lifetime of anxiety and depression. And, as usual, research supports this.

For instance, according to a 2016 research report out of Florida State, “students who had mothers who allowed them more autonomy reported higher life satisfaction, physical health and self-efficacy. However, students with a so-called helicopter parent were more likely to report low levels of self-efficacy, or the ability to handle some tougher life tasks and decisions. In turn, those who reported low levels of self-efficacy also reported higher levels of anxiety and depression, and lower life satisfaction and physical health.”

I’d love to poo-poo this, but as a recovering helicopter parent, I must hang my head in shame and agree. I have blogged extensively about how hands-on I was with my oldest. When she was little, I was right there to fix every problem, wipe every tear, and defend her against every slight. While my helicopter ways did come to an end when I got hurt, the damage was already done. After 11 years of hovering, my big girl has big issues making decisions. She’s anxious, too. Recently, she came to me holding two dresses. Which one should she wear to her award ceremony, she wanted to know. “Please don’t make me choose,” she said. “I don’t want to be late.” I didn’t want to be late, either, so I told her to wear the blue one, cringing that I didn’t make her choose herself.

I’m trying to dig us out of this hole, though. This morning my big girl made herself Cream of Wheat. She didn’t want to, but I made her do it. Was she happy? No, not really, but one day — when she is running late for work and needs a quick meal — she will appreciate that she can take care of her own needs. She’ll also appreciate that I started doing my job right. Rather than just taking care of her I taught her to take care of herself, which should be the end goal for all of us. If we do our jobs right we make our positions obsolete. At least until the grandkids come!

Breaking the TV Habit

It’s been almost a month since my little one stopped watching television. Well, there was that one slip two weeks ago. Oh, and she watched a little TV this weekend while she was hanging out with a gaggle of kids. Otherwise, though, she is TV-free.

It all started with a doll. A few years ago the Today Show had an American Girl special. A bunch of dolls selling for $60. I went ahead and bought a few, putting them up in the attic. In April I was upstairs pulling down summer clothing for my little one. She came upstairs and saw the AG boxes, asking to open them up. Inside, she found Caroline Abbott who, with her creamy skin and long blonde curls, resembles my girl. She wanted that doll. She begged for the doll. We struck a bargain. If she could give up television for 40 days, she could have the doll.

It was a tough decision for her. My older daughter never watched TV as a young child. In fact, she watched no TV (pretty much) until she was in pre-K. As she got older she watched on weekends, but TV was off-limits during the school week. Today, she barely cares about watching TV. It’s not something she’s used to doing.

The little one had a different experience. My husband was Little Girl’s caregiver a lot when she was little, and he — a TV junkie himself — let her watch Sesame Street, Yo Gabba Gabba and Backyardigans. Her viewing habits were still within normal limits, though. And then I got injured almost three years ago. Little Girl had just finished kindergarten. During my long convalescence my little one watched a lot more TV. I was immobile and out of it a lot. The TV became a babysitter for my husband, who handled dinner most nights and tried to adapt to his new roles. Little Girl’s occasional TV viewing became a habit. It worried me since television viewing is implicated in dozens negative outcomes including:

There was nothing I could do, though. Once I started getting back to life, however, I limited her television viewing. It was too late. She craved TV. She would choose TV over almost anything. Yes, she still did plenty of pretend play, sports, playdates, but TV was definitely on her radar more than it should have been. The doll was a perfect opportunity to pull her back from a bad habit.

The past month of TV detox has been interesting to watch. In the beginning, she would walk into the TV room and try to finagle a few minutes of viewing time. She also told me how “hard” it was not watching TV. She lamented all the new shows she would miss. (Damn, The Disney Channel is good at sucking kids in!) But slowly she started breaking free of TV’s grip.

Today, Little Girl spends a lot of time in the playroom. She’s become a voracious reader, asking for trips to the library several times a week. She creates elaborate scenarios with her dolls, stuffed animals and Legos. She gardens with me and plays outside on our playground. It’s been amazing, actually.

Little Girl gets her doll on June 8. She also gets back access to the TV. We intend to limit her viewing so she never gets back to the point of needing to watch a show. I’m really hoping that her time away from the TV will reinforce the message that television, like everything, is best in moderation.

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Facebook has a way of reminding us of the good times and the bad. This morning one of my “On This Day” memories fell into the later category. It was a simple status update:


I remember that day like it was yesterday, mostly because it is one of my major regrets, and one I think about every once in a while. It was the time I missed out on an amazing experience with my daughter, choosing a $1,200 assignment instead. What makes it worse: Less than three months after I posted this I got hurt and ended up lying in bed for the better part of a few years.

I went from this person:


to THIS person:


From running a 10k to feeling like my head was exploding and my entire world was moving 24/7. From a healthy 137 pounds to a sickly 118 pounds. From being a whirlwind to being a lump that didn’t move.

While I would do anything to get the past nearly three years back (especially the first two that were spent in constant pain and movement) the accident gave me clarity. It helped me see what is truly important. While work is important — the whole paying for shelter and food thing — health, family and fun are three things that are more important.

I don’t get confused about that fact anymore. When someone asks, like they did last week, if I can do a conference call on a Tuesday — the same Tuesday my younger daughter has her school plant sale — I tell them no, suggesting a different day and time. I finally realize, thanks to my injuries, that interviews can be rescheduled. Helping my daughter choose plants for grandma and me can’t.

Why is a plant sale more important than work? Because in life you have to do what makes you happy. Happy is something fragile and special and fleeting. We have to live through a ton of crappy for every moment of happy. So yes, while I love my work and yes, it makes me happy, it doesn’t leave imprints on my heart. Not like watching my child — and a bunch of her friends and classmates — debate the merits of a pink flower over a purple one. Not like a day at the museum with my then-10-year-old would have.

And so today, as you go about your day, I hope you’ll remember this blog and I hope you’ll choose happy. If you’re tempted to choose work, think of me sitting in my office three years ago today, moderating a webinar as my daughter joyfully ran through the Museum of Natural History geocaching with her friends. Remember the fact that I had to look up what the title of the webinar was and how much I got paid for it. Remember the fact that I missed out on something that was worth far, far more than what I got paid. Then make the best choice for you and your family. Sure, sometimes work does have to take priority. That said, unless you’re a surgeon or an astronaut there’s probably a way to reschedule that call or change shifts with someone else. Billable hours come and go. Moments spent with loved ones last a lifetime.

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