Chapter 24

DO IT IN STYLE

All day after I made breakfast I felt fantastic. I didn’t push myself too hard, but I stayed engaged with life. I was getting back on a normal schedule where day felt like day and night felt like night, and I ceased to envision myself as a lonely spirit wandering the darkened halls and rattling my chains all night. That evening I could sit with the family at dinner and not feel any awkwardness or resistance to being around food. My taking on the eggs with Katie must have broken the spell. I spent quality time with all of my kids that night, outside of my own bedroom. I brushed Marre’s hair while she told me about a movie she’d just seen with a friend and I wasn’t sarcastic about her hyper-PC opinions. Jack showed me a funny video he’d edited in iMovie that was a compilation of famous film scenes intercut with a guy talking about chocolate cake, and for once I kind of got his humor. Katie taught me how to make “fluffy slime” with shaving cream and I didn’t complain about the mess. Patrick, Michael, and I sat in the playroom tent telling scary stories, and not once did I correct them for being too gory about alien zombies eating brains. I already knew they weren’t serial killers, so what was wrong with a little macabre creativity? I’m sure Tim Burton’s mom got over the worry at some point.

That evening I actually “went to bed” since I hadn’t been in it all day, as I had in the past few weeks when “going to bed” was redundant. Jim had my pillows propped up around me so that both my head and feet were elevated in sort of a U shape. My legs were up so the blood would not pool in my ankles, and my head was also raised so I could breathe while I slept. This may not seem like a very comfortable position, but I was happy in my little U nest. I was actually exhausted. Not the bad exhaustion that I’d been feeling for weeks, but a good, “I had a long, productive day” exhausted. I felt human. I told Jim I was ready for him to go back on the road. Jim loves performing, and I was sure he missed it. I knew he was wanted back, according to the endless comments on Twitter. The funnyman was resurrected and I needed to share him. “Are you trying to get rid of me?” he asked.

“You caught me,” I answered. “There are a lot of gentlemen callers who are dying to change my trach pad.” I assured him that his going back to work would be the best thing. Pat and Emilea were five minutes away if I needed to go back to the hospital. Family members were still popping in on a regular basis. Lizzy’s boyfriend (now husband) Rudy had even stepped up to take little Patrick to a birthday party when no one else could (Rudy: “The pizza was pretty good”). Jim said he would call his manager and give the green light, but he’d feel more comfortable if he started with venues close by on the East Coast in the event he’d have to return quickly. We laughed about how it was just like the ninth month of all my pregnancies when we were afraid he’d be onstage doing the “Hot Pockets” routine and I’d be having a hot pocket moment alone. We both agreed: It was time for him to go back to reality.

I turned off our lamp and Jim turned on the news, which before all this had been our routine at the end of the day. I found myself suddenly interested in current events. It struck me that during all that time from discovery of my tumor through recovery thus far, I was very mentally removed from what was happening in the world, and there was a lot going on.

Years from now, this particular period in 2017 would probably be viewed as one of the most politically volatile times in modern American history. There was a new president. Half of the country hated him like poison and the other half felt he could do no wrong, despite alarming evidence to the contrary. I’d hear bits and pieces of news here and there, but I was too sick to really comprehend anything. It seemed like every week there was another huge protest or march going on. As if the turmoil in Washington wasn’t enough, there were also horrific sexual harassment scandals in the entertainment, religious, and business worlds, and mass shootings on what seemed a regular basis. The country was bitterly divided and civil discourse was a thing of the past. Whereas before, I would have been quick to pick a side and decide who was good or bad, going through the personal trauma that threatened my very life and the lives of my family, I’d become out of touch, disconnected from the political vitriol. It didn’t suck me in anymore. Of course it’s important to care about gun violence, racial inequality, gender inequality, or persecution of any kind. It’s not that politics don’t matter—obviously the policies of our politicians affect people’s lives in grand and small ways, but what I’m talking about is the spectacle of politics. The thing that robs us of all capacity to see nuance and to find the humanity in others beyond the political label. Back in the ICU all the people who came to help me could have been from diverse political viewpoints, but they weren’t fighting with one another. They were working together around a common cause: love for me.

But since I was feeling better that night, I quickly forgot about this epiphany and got sucked right back into caring about what was happening on cable news. It was something incredibly salacious like Trump covering up a payment to a porn star and I was captivated, hook, line, and sinker. This gossip was like the chocolate-syrup-covered dessert I was craving. I recognized this icky part of myself in the moment, but I didn’t turn off the TV. I reached for the remote to change the channel and saw a silver dollar–sized spot on my right hand with large pink bubbles on the skin between my thumb and my wrist. “Holy crap! What happened to my hand?” It looked like a severe allergic reaction—maybe hives or bites from a giant extraterrestrial mosquito, or even a brain-eating zombie. I showed it to Jim, who examined me with concern.

“It looks like burn blisters,” said Dr. Jim. “Did you burn your hand?” It did not take us long to realize that on my right side, I’d lost all sensations of pain and temperature. When I was cooking breakfast for the kids, I must have rested my hand on the hot frying pan and because of this numbness, I did not immediately react in pain and pull it away. I must have just let it rest there and sizzle. Here I was feeling so capable, yet I wasn’t even aware of this major injury to my own body. The oddest thing about this discovery was that I could move my hand really well. I mean, I couldn’t tie shoelaces yet, but I could open and close my fist and isolate each finger.

Jim called Leslie, who was afraid I might have a blood clot. She called me in for an MRI. So much for cable news and chill. Up to Mount Sinai again we went. Turns out I had no blood clot and the numbness was just another cool residual side effect from having a pear in my brain that would “probably resolve itself eventually.” I got back in bed and resumed feeling sorry for myself. Jim started second-guessing his decision to go back to work. “It wasn’t a blood clot, Jim. Don’t worry about me. I’m just a mutant. Maybe I’ll join The Avengers.”

Life Is Beautiful

I really needed a pick-me-up. I had been in pajamas for two weeks, and though I had constant medical care, I needed to do something for myself. I mean, everything I was doing was for myself, but I viewed all the therapy work really as the need to get back to me, the caregiver. I wanted to do something purely for my own vanity. Get a manicure or buy a scarf to cover my hideous blowhole. Something for my appearance that would make me feel less like a revolting monster. Of course, health is the most important, but taking care of appearances gets a bad rap.

My first adventure back into the world of beauty was getting my hair done. The half-shaved look had gone from punk rock to scraggly. My fantastically stylish cousin, Tina, set me up with her beauty guru, giving him fair warning that I was part invalid, so he wasn’t shocked when I rolled up to his high-end studio with my multitube couture. The thought of doing this sort of extravagant thing for myself made me happy. Finally, I had something to look forward to! The night before that first haircut, when Jim got into bed I was excitedly chattering about how I was going to Chelsea for some beautification. He was like, “You look fine to me.” He so didn’t get it.

I asked for “the horse” to take me to the bathroom to brush my teeth. As he helped me up, I noticed that my right leg was completely numb. I was used to the dullness because of the bedrest and general atrophy, and the lack of feeling on my right side, but suddenly my leg was tingling. Jim was concerned, but I was hoping it was a sign of the feeling coming back. He sent a “just in case” text to Leslie asking if we should be worried. We didn’t hear back right away, so I figured it was nothing.

In the morning, my mom, who was still living with us, took me to the fancy Chelsea hair salon with my tracheotomy and oxygen tank to do something about hair that looked like David Lee Roth on one side and Eleven from season 2 of Stranger Things on the other. I did not feel quite ready for real clothes, so Jim bought me a beautiful pair of green satin pajamas with white piping that Weezie said looked like something a 1940s Hollywood icon would lounge around in: “You are so Kate Hepburn!” Apparently my mom felt like she was a close personal friend with Katharine Hepburn.

We arrived at the salon in the elegant brownstone. Mom came around to my side and helped me out of the cab. I had a white silk scarf loosely tied around my neck to cover the tracheotomy. I felt like there should be flashbulbs popping. I pretended my portable tank was a fashionable handbag as I limp-waltzed into the salon with my head held high. Tommy cut and styled my hair like Edward Scissorhands taking on a topiary while he gossiped with Weezie. I listened, smiling, while I tried to ignore another customer, just a few chairs to my left, eating cut fruit out of a plastic cup—a cruel reminder that no matter how glamorous I felt, it would take time before I could have a normal life. Ignore the fruit, ignore the fruit…, I told myself.

Tommy spun me around to admire his work in the beautiful framed mirror. Weezie had put red lipstick on me, saying, “My grandmother Mimi would never leave her apartment in Tudor City without lipstick!” I felt marvelous. I forgot about the cut fruit. I got such a lift from this little bit of self-pampering. I thought about all those mornings before I got sick that I would pull on leggings and throw my hair up in a ponytail, caring less and less about my appearance over the years as I stressed about what the kids were going to wear. I wanted to bottle this feeling and open it up when I was feeling glum to remind myself that it’s okay to have these little indulgences. I needed them!

Princess for an afternoon

My phone rang. I had just texted Jim a photo of “the new me” and I figured it was him, wanting to see me immediately so he could plant a kiss on my ruby-red lips. It was Leslie. She had just gotten the text about the tingling in my leg and was very concerned. “But I feel fine now!”

Leslie was adamant. “It could be a blood clot. I want you to come in right away for another CT scan.” Just as I was getting the last touches on my fab new coif.

“We have to go in,” said my mom, concerned.

“Maybe I’ll run into Joe.” There’s nothing better than running into your ex-nurse when you’re looking fabulous.

After the five-hour ordeal of going to the hospital, finding out I couldn’t go in the tube with my metal trach, having an otolaryngologist come swap it out for a plastic one, and the familiar hour-long ride through the noise tube, my beachy wave blow-out was transformed into more of a hurricane-mangled matted-dreadlock look. The best-laid plans of mice and women who have their hair done at fancy salons. On a more positive note, again it turned out I didn’t have a blood clot. Just another false-alarm urgent trip to the hospital.

The bizarre juxtaposition of beauty day and medical drama united me and my mom in female power like Wonder Woman and Supergirl. Beautiful, powerful mutants. She with her nine kids and me with my five kids plus brain tumor surgery, which has to equal like at least four more kids, right? We agreed on the way downtown, life is hard, but women are so strong! When we arrived back at home later that night, we were a dynamic duo who could survive anything, and look good doing it! Jim greeted us at the door. “Wow, your hair looks amazing!” He was serious. Note to self: to impress husband, get hair done, then walk through a tornado.

Setbacks Keep You Moving Forward

After the elation I had felt when being discharged from the hospital, going back so often was a major disappointment and it started to really weigh on my spirit. At this point, I was making so many trips up to Mount Sinai, I started to refer to it as “my summer home.” Throughout our careers, Jim and I had become used to setbacks and remaining strong in the face of disappointment. The entire time we’d been together, the “chance of a lifetime” was presented several times a year and then abruptly yanked away. Regardless of the momentary devastation, over the years we’d come to recognize that cumulatively we had it really, really good. We’d gained invaluable wisdom, worked even harder, and become seasoned by our professional frustrations, understanding that every failure was a necessary part of a long game. But this self-assured hubris as it applied to our careers did nothing to inform us in this new roller-coaster ride we were on. The definition of a “setback” changed profoundly when it came to life and death. Not getting a script deal or a lead role in a pilot as opposed to finding out you have to go back to the hospital is like the difference between climbing a flight of stairs and climbing Mount Kilimanjaro. The constant mini victories followed by devastating disappointments of the health crises stripped us of all our mature wisdom and turned us into wide-eyed amateurs who thought they were going to be discovered by sitting at the soda counter at Schwab’s, only to find themselves dressed as pizza mascots handing out flyers for a lunch special.

We needed to pull ourselves together. We wanted everything to go back to business as usual far faster than humanly possible. This was to be a new exercise in patience, something that maybe we had learned in the entertainment business but now had to relearn in just living life. Based on my tumor-related experiences so far, I had come to understand that time would be the only salve on the burning frustration of not being able to quickly get better and put this all behind me. I wanted to get back to being a hands-on mother before all my kids grew up and flew the coop. There’d been so much high-stakes drama in this brain tumor saga already, and it didn’t seem like it was going to end anytime soon. It was a series of mini steps forward and giant steps back: Making peace with the brain surgery and then discovering the fibromuscular dysplasia. Getting through the surgery successfully and then suffering the enormous setback of pneumonia. Finally being discharged from the hospital and then having the trach accident.

I had to get a grip on the fact that this heart-wrenching ride I was on was making me stronger and teaching me not to give up. I wanted to jump right on a bike, but I learned that I had to take it slower. Even though I’d lived my whole life as if racing in a 50-yard dash, now I had to take the attitude of a long-distance runner: pace yourself at the beginning in order to run the second half faster than the first, and finish strong. Having to relearn the same lessons that you thought you’d already mastered in life is humbling. Even more humbling is being honest with your kids that you are dealing with disappointment and that it’s a necessary part of life. You can’t hide from pain. Things aren’t always going to go your way. Nothing is going to get handed to you, and if it does, it’s not going to have much value.

I remember little Patrick coming into my room and saying, “Mom, are you going to be able to eat soon?” I answered, “No, Patrick. I really want to eat, but it’s probably going to take a lot of work and a really long time.” I thought it was so sweet of him to bring that up out of the blue, but I wondered what had prompted it. I asked him the reason for his question. “Because, Mommy, when you don’t have a PEG and a trach anymore, I want to take you for a picnic. But don’t worry, I won’t go without you. I’ll wait for you to get better. Keep working hard and all your dreams will come true.”

And they did.