Adrienne's Journal - 5 Years have passed...

"We move on in our own time, in our own ways. There is no cut-off date for grieving or feeling sad. There is no timetable for when to start dating. It’s all about doing what feels right and authentic to whoever you are."

Posted by Adrienne Gruberg 

Adrienne's Journal

It’s five years since Steve died. March 19, 2011 at 6:45p.m. But who’s counting? Even with five-plus years of anticipatory grieving, when the real thing comes along, you’re sideswiped.

Every year, at this time, I run the “last days of Steve” scenario in my head, over and over again. The three weeks leading to his death are still very much etched in my memory. The quick downward progression. The emergency room visits. The hospitalizations. No, the end was definitely not fun. It was an emotional roller coaster that still has me reeling to this day, which is why I’ve come to limit the days I revisit that time.

But, five years is definitely a milestone. I went from counting the days, to the weeks, to the months, to the years—it’s amazing that it’s come to that, since he’s so present in my thoughts and daily routine.

There is life after caregiving. I can attest to that. One month after he died, I went to open our summerhouse full of its memories—it was a great space to grieve, reminisce and heal. By the end of the season, I was ready to take on the mission of creating The Caregiver Space. As tinged with Steve, illness and melancholy as the task may have been, it was my way of reinventing myself and getting on with life. Something that began as a pipe-dream and a way of staying in touch with women who had been in my spousal care cancer support group, became instead a way of touching all caregivers in need of emotional support.

So, creating the website was my way out of the darkness and into the light—the website and Broadway theatre. I’ve never been one who had a problem doing things alone—restaurants, museums, movies and plays—and I hoped I’d begin to meet people doing things I like to do—to populate my new life with people who had common interests. Didn’t happen. But that was never the reason for going out. I relish cultural expeditions on my own. It was getting to be the time, however, for me to “fish or cut bait,” so to speak. I was, much to my surprise, ready to date.

Well, I had a few bites but nothing that intrigued me—so I started prospecting myself. It sort of felt like “Goldilocks”; this man was too short, that man lived too far away and eventually I found someone who was just right. Steve had let me know he wanted me to find someone to be with after he was gone—but he had his list of people I could not date. What’s really funny is that the first two people who were “suggested matches” for me in my daily notifications were on his list of candidates not to date. And I was going to respect his wishes.

My capacity for reading people paid off. I’ve been dating the first man I went out with—someone I found for myself—for almost two-and-a-half years. I DO know myself and have learned to set boundaries in my life. I’m not a kid anymore. I’ve learned to make my feelings known. After years of caregiving and what sometimes felt like bowing to my husband’s every whim, what “I” wanted was paramount; being direct, honest and caring has allowed me to be in a loving relationship where my limits and my person are respected.

In no way do I feel disloyal to Steve or his memory. My “boyfriend” (in quotes because it feels so silly saying girlfriend or boyfriend when we’re both over 65) lets me speak about my past. There are photos of Steve everywhere and that’s fine and how it should be.I was with Steve for over thirty-five years—he is still a big part of my life—and he still comes up in conversations with people who knew him. There’s no way I could be with someone who didn’t understand that.

Moving on doesn’t mean you have to leave your past behind you—sometimes I feel mine is like a friendly, cozy, favorite sweater I wear that keeps me safe and grounded. It’s made me who I am. Your past is part of who you are. It doesn’t go away. Carrying it around with you is unavoidable.

We move on in our own time, in our own ways. There is no cut-off date for grieving or feeling sad. There is no timetable for when to start dating. It’s all about doing what feels right and authentic to whoever you are. If you stay honest with yourself, you’ll know what to do when. It’s all about being an individual again vs. part of a unit. Find your new comfort zone—sometimes it’ll be just a little out of your old comfort zone. Be brave. Be happy.

Bloggers Note: I have joined the group http://thecaregiverspace.org/  I strongly endorse this resource for all providing caregiving to a loved one, a friend or as a professional.

Children Don’t Always Live

Children Don’t Always Live

By JAYSON GREENE OCT. 22, 2016

My daughter, Greta, was 2 years old when she died — or rather, when she was killed. A piece of masonry fell eight stories from an improperly maintained building and struck her in the head while she sat on a bench on the Upper West Side of Manhattan with her grandmother. No single agent set it on its path: It wasn’t knocked off scaffolding by the poorly placed heel of a construction worker, or fumbled from careless hands. Negligence, coupled with a series of bureaucratic failures, led it to simply sigh loose, a piece of impersonal calamity sent to rearrange the structure and meaning of our universe.

She was rushed to the hospital, where she underwent emergency brain surgery, but she never regained consciousness. She was declared brain-dead, and my wife and I donated her organs. She was our only child.

The incident was freakish enough to be newsworthy. Requests for interviews flooded our email while we still were at our daughter’s bedside; television trucks trawled Manhattan looking for us. When we left the hospital, I caught my daughter waving at me from the corner of my eye. A picture of her from my wife’s Facebook page was on the cover of The Daily News.

Over the next year, we became another local story about the quiddities of fate, the heartless absurdity of life in the big city. “Oh, you’re that couple,” a father said gravely when we introduced ourselves at a support group for bereaved parents. The attention was both bewildering and gratifying. We met couples whose children had died at home, in private, with only their shattered family to help them cope. There was succor to be drawn from all this awe and care, and I found myself leaning into it as often as I pushed it away.

Seven weeks ago, our second child was born; a son, Greta’s younger brother. They would have been exactly three and a half years apart. With his birth, I have become a father to a living child and a spirit — one child on this side of the curtain, and another whispering from beneath it. The confusion is constant, and in my moments of strength I succumb to it. I had a child die, and I chose to become a father again. There can be no greater definition of stupidity or bravery; insanity or clarity; hubris or grace.

Lying on the floor, talking to my son in soothing tones and jingling bright, interesting-looking things in front of his eyes, as I did with his sister, I yearn for him to feel his sister’s touch. Then I remember with a start: We were never going to have him. We always said Greta was enough — why have another kid? I gaze in awe. He wouldn’t exist if his sister had not died. I have two children. Where is the other one?

Becoming a parent is already a terrifying process. After a child’s violent death, the calculations are murkier. What does my trauma mean for this happy, uncomplicated being in my care? Will it affect the choices I make on his behalf? Am I going to give a smaller, more fearful world to him than I gave to Greta? Is he doomed to live under the shadow of what happened to his sister?

After Greta was born, my wife, Stacy, and I had a habit of checking to make sure she was still breathing. During that time, we ran into a fellow parent, a mother of two children, and Stacy made a nervous joke about it. The woman smiled. “They’re always breathing,” she said.

I imagine it’s the same for all parents. You begin to adjust to the reality of your child’s continuing existence. Their future begins to take shape in your mind. They’re always breathing, you tell yourself.

Life remains precarious, full of illnesses that swoop in and level the whole family like a field of salted crops; there are beds to tumble from, chairs to run into, chemicals and small chokeable toys to mind. But you do not see death at every corner, merely challenges. The part of you that used to keep calculating the odds of your child’s existence has mostly fallen dormant. It is no longer useful to you; it was neveruseful to the child; and there is so much in front of you to do.

At 2, your child is a person — she has opinions and fixed beliefs, preferences and tendencies, a group of friends and favorite foods.

What happens when that child is swiftly killed by a runaway piece of everyday environment, at the exact moment you had given up thinking that something could take all of this away from you?

When I am on the playground years from now, watching my son take a fall from the monkey bars, I might not panic. But some part of me will remember: A heartbeat can stop.Hearing a heartbeat for the first time during the ultrasound, and then watching doctors shine light on unresponsive pupils two years later, you stop thinking of a heartbeat as a constant, and more as a favorable weather condition. Now I am a reminder of the most unwelcome message in human history. Children — yours, mine — they don’t necessarily live.

When I realized Greta would not live, I wanted to die so purely, and so simply. I could feel my heart gazing up at me quizzically, asking me in between beats: “Are you sure you want me to keep doing this?” But I found I could not give the order.

Since my son was born, I’ve caught myself making concrete plans for my suicide if he were to die. I will draft a letter to my parents, or even tell them face-to-face. “I’m going to meet my children,” I will say. If the world takes this one, I am not meant to be here. It is a frightening thought because it is so logical. How would anyone argue me out of it? Who would even try?

I do not believe anything bad will happen to him in his infancy. It makes a sort of sense: Nothing bad happened to Greta as an infant. I do not wake up in the middle of the night to check on him. I do not even flinch when I hand him to others and watch them grapple awkwardly with his floppy neck.

However, some part of me is grimly certain he will die at 2. The evidence is all on my side: 100 percent of my children have suffered this fate. Even as I carry my baby into the world — this crowded, clamorous, septic world — I am holding a breath that I will not release until he turns precisely one day older than Greta.

During my son’s birth, I leaned into the crook of my wife’s neck while she pushed, just as I did when Greta was born. I closed my eyes and smelled the gauze from her deathbed. My boy came out sickly white, with the umbilical cord knotted around his neck, and he was silent for an eternal second before his gurgling cry bubbled through his lungs and my wife clutched him and wept. “This is a miracle baby, I hope you understand that,” said our midwife. She was the same woman who had caught Greta and handed her to her mother; Greta had promptly let loose a tarry slick of meconium all over Stacy’s belly and wailed, her feet swiping feebly in it like a bird in an oil spill.

Children, hospitals, blood: It’s all a confused swirl of joy and agony. Somewhere in my subconscious, my daughter is on a scale, her birth weight being calculated; in the same moment, she is blue and cold and being carted away. All I am is a spectator: Her body is not mine to protect, not mine to save.

My wife and I are young still. With our son’s birth, we have committed to another round here on earth. My son will always have a dead sister; when I am 50, my heart will ache in this exact same way it does today. Children remain dead in ways adults do not, and on bad mornings, in the wrong light, everything from here on out feels like ashes.

Thankfully, I see it that way only in the margins. A breezy day, a good drink, my wife laughing, holding my son’s head to my chest — these things help dispel it. I look at my boy, a beautiful already-fattening baby, and this world, the one that senselessly killed my daughter, is benevolent once more.

I talk to him about his sister, whom I think he met before arriving. “Your daddy will always be sad your sister’s not here,” I tell him. “But you fill Daddy’s heart up with joy and he loves you more than everything.” I also want to say, but do not: I’m sorry. I’m sorry that I’ll never be the same father I was before. I’m sorry that you will live with me, to some degree, in grief.

But life is good: Greta loved it. She found every second of it delightful, and at its best when appreciated with others. I think of her hand touching my cheek and I muster up every drop of bravery I can: “It is a beautiful world,” I tell him, willing myself to believe it. We are here to share it.

Jayson Greene (@Jayson_Greene)

Bloggers Note: Thank you to Jayson for his courage to honour his daughter with their story. 

You have cancer.... "I’m sorry. I didn’t get it."

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures… and the scans. Ugh, the scans. You were going through the motions trying to stay positive- but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat is yet is an awful, helpless feeling. I’m sorry. I didn’t get it.

I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

I didn’t get how much you hung on to every word I said to you. You replayed it in your mind a hundred times. Did I really mean this or that… you wondered if you understood. You called me again to make sure. And maybe another time because your friend asked “well, what about _____”. You asked your other nurses to see if you got the same answer. Please know we are happy to take a million calls a day with the same questions until you can make sense of it. I’m sorry. I didn’t get it.

I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how are you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.

I didn’t get what really goes on at all those “other appointments”. I knew what to tell you to expect at your oncology appointments- but all the different types of scans, radiation, operating room, procedural areas- I didn’t really know what went on behind the scenes there and what to tell you. I should’ve known more about the whole picture. I should’ve been able to warn you that there was an hour wait after a dose of medication before you could actually have a scan. I should’ve been able to tell you what you can and can’t eat or drink before a certain procedure or that some treatments require going every single day. I’m sorry. I didn’t get it.

I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

I didn’t get how crazy this makes you. Like you literally wondered if you had lost every working brain cell. Especially when dealing with side effects or other symptoms. You could’ve had every side effect in the book from chemo or none at all and you’d still wonder if it’s really working the way it’s supposed to. You may just have had a headache, or a common cold, or a sore joint- but you were never certain it wasn’t related to your cancer and always wondered if it was a sign of progression, even when it made no sense. I hope you didn’t feel dismissed when you called me to ask about it and I said not to worry. I’m sorry. I didn’t get it.

I didn’t get why you were always suspicious. You couldn’t help but wonder if they all knew something you didn’t about your prognosis. We shared the percentages and stats with you – and that every cancer is different … but still- is there something more? Something they were protecting you from or just felt too bad to tell you? Logically, I know the answer to this but find myself with these feelings as well. I’m sorry. I didn’t get it.

I didn’t get how confusing “options” really were. In some cases, there may be more than one choice. Whether this be physicians, medications, sequence of treatment, etc-  I would try my best to help you understand every angle, but more options many times just meant more confusion. You wanted to be involved in your own care- but the stress of too many options was sometimes too much. You begged me for my input and to tell you what I would do if it were me. I hated that question, but I hear you now. I’m sorry. I didn’t get it.

I didn’t get how hard it is to accept help. Especially the moms. This just wasn’t something you’re used to doing- but you needed it. You felt shy about admitting that you’re not sure you could’ve gotten through the first few months without the extra food, gift cards, support, and other help you were given. You felt humbled at the outpouring and just only hoped you would’ve done the same for them. You still wonder if you said thank you enough or if you missed an opportunity to give back. I’m sorry. I didn’t get it.

I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

I didn’t get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue- but there should really be a separate word just for cancer patients, because it’s crippling. Really. Some days you really wondered how you’d trudge forward. I’m sorry. I didn’t get it.

I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

I didn’t get how strange it was to see your body changing so quickly. You stood there and looked at yourself in disbelief in the mirror. Maybe it was extreme swelling, maybe it was scars, maybe it was hair loss, maybe it was pounds melting away when you do everything in your power to eat as much as you can. It’s hard- your appearance is tied more closely to your identity than you’d like to admit and these were constant reminders of what you were up against. You just wanted to feel like yourself. I’m sorry. I didn’t get it.

I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

I didn’t get how much you worried about your kids. For this, I’m the most regretful. I should’ve talked to you more about them- and not just in terms of lifting restrictions or germs. You worried about how this was going to affect them. You worried about not being able to keep up with them or care for them properly on your bad days. You worried they’d be scarred and confused. You worried about leaving them. I’m sorry. I didn’t get it.

I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something- it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized – it is not a phase. Yes, there are phases- the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I hear that gets better- time will tell. And time is precious. I didn’t get it.

I do have to admit; I’ve probably had it a little easier than you to start off. I know the language, I know all the right people, I work where I get treatment so sure- it’s more convenient. I watched so many of you march through this terrible nightmare with a brave face and determination- without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you. Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great- it’s good for the oncology nurses’ soul. Even though healthcare workers don’t really know what it’s like to be you (well, us) it’s OK. Nobody does. I just hope that I was still able to give you a little guidance and strength to help you get through your cancer treatment. Even if I didn’t get it.

Love,
Lindsay, Oncology RN  

Dear every cancer patient I ever took care of, I’m sorry. 

I didn’t get it.

Posted on November 14, 2016

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