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THE HELP, WHAT TO SAY, WHAT NOT TO SAY (AND SHERYL SANDBERG)

THE HELP, WHAT TO SAY, WHAT NOT TO SAY (AND SHERYL SANDBERG)

I have caught Sheryl Sandberg on a variety of news shows being interviewed for her new book called PLAN B. She was speaking about the process of grieving over the loss of her beloved husband two years ago. I never read her first book that she had written prior to her husband’s death called, LEAN IN. I had heard it was a bit controversial, but that is not why I didn’t read it; I didn’t read it because I “lean in” my own way and I was really not interested in hearing about the head of FACEBOOK telling me how to be a better woman in the workplace. As I write this, I realize that it is not fair to make a judgment on a book, especially a woman’s book without reading it. Perhaps in my spare time which I have a lot of these days, I will read both so I can see her take before tragedy and then afterwards.

In the interview on CBS THIS MORNING this past Sunday, she reflected on a conversation she had with her Rabbi. She said something like this to him, half joking, half serious, “Rabbi, this is not what I was thinking when I was writing the book, Lean In.” The brilliant Rabbi’s response? “Lean in to the suck. This is going to suck, but lean in.”

Sheryl Sandberg was at the precipice of leaning in. The grief was layered as she realized she had her own grief, her children’s grief, her husband’s family and friends’ grief. But what I got out of the brief interview more than this was her comments on the silence when she went back to work, the lack of acknowledgement of the very bright elephant in the room, her husband’s young and sudden death and the way her peers at work unintentionally skirted around the tragedy.

I get this and have spoken about this before in many of my writings. This is why I started carrying Emily Mcdowell cards, so often people don’t know what to say so they avoid it all together or they say something they think is meaningful. There is no malice here, no ill intent for sure; we have just not been programmed to deal with healthy communication around traumatic events. Like Sheryl said, (I feel like we are on a first name basis now, though she was not available to friend on Facebook, just follow, kind of ironic), mentioning Dave is not a forced reminder, she will never run the risk of not being reminded as she is reminded every day. He was her life partner. They loved each other.

For me, my area is the same. Good meaning people use language or lack there of to navigate how to talk to me post mastectomy. I am an open book. I am someone who is willing to have the uncomfortable conversations, who is willing to coach the dialogue to help people who have had the fortune of healthy lives and lives without the tragedies. I am willing to share the way my breasts look (within reason of course) with women who feel it helps them understand and ultimately say and do the right thing. Women have done this for me and I have found it extremely beneficial in this post surgery as I heal and understand the tweaks and twinges and scars that are a very normal part of healing. I am not freaked out. I am not afraid. I am human. I am woman, here me roar, but also hear me curl up in a ball and cry my eyes out.

Here are some of the most common phrases that people have said to me and I have been reminded each time that I have said these very phrases. Again, with no ill intent as people want to say meaningful and helpful things to help me feel better, I put in parenthesis what emotion it conjures up. For anyone reading this, if you have found a phrase you have said, this is not to make anyone feel bad at all, it is just a means to get a better conversation going so we can be helpful and both parties can feel great at the exchange.

“You look amazing.” (this is one of those lines that someone who really doesn’t feel very beautiful or amazing isn’t sure what to do with, sure most people who are standing and dressed after surgery or tragedy will look amazing relative to our perception of what we think we should look like.)

“You get to get new tits and you are so lucky, you should ask for the tummy tuck too, I hear you get that as a bonus.” (This is in the top 3 Family Feud game show, all I have to say is I didn’t want new tits, I preferred my own and I like my flat stomach that I pay thousands of dollars for in beach boot camps to stay scarless, thank you.)

“I heard you were sick. What can I do?” (I am not sick, my cancer was caught early, I am recovering, I was never sick, hence the good fortune of regular mammograms)

“What do you need, do you need anything?” (I don’t know what I need, I am too tired to have to think about this or even ask for this.)

“You are a rockstar, you got this.” (This creates a need to mimimize my pain to try to live up to some external sense of power I am supposed to be having)

“God doesn’t give you what you can’t handle.” (How do you know this?)

“Whatever you need, I am here for you.” (Then be there when I can summon the intense courage it takes a woman who is used to doing everything for herself to ask for help. If you can’t really be ‘here,’ then please please please do not offer help ever. This is the worst thing you can do as a friend, empty help to make yourself feel like you are at least offering. Super yucky.)

The last one is complete silence and absence if you are or have been close to the person. This is one of those awkward moments that is hard to fix later on. Reach out as soon as you realize you have been remiss.

Truth be told, I have been guilty of every single one of these in my precancer life, I remember getting into a huge fight with my dying brother who could barely take a shower alone at 24 and yelling at him, “Well at least die with dignity!” OMG I shudder, but I also forgive myself as it wasn’t like I had any experience of losing a sibling. I realized that it was a stupid insensitive thing to say. I corrected myself as we discussed the bullshit one liners we are all guilty of.

To me here are some of the best things you can do depending on the level of relationship you have with the person on the other end.

Easiest and best no matter how far away you are from knowing the person is to send a card or a text that simply says, “thinking of you.” I cherish every card and every text.

If you want to send something, remember that mostly everything, flowers, food, helping with house chores comes the first week and it is gloriously helpful. For the recipient this is the easiest week to ask for help because it is so obvious we need it, but the third week, it is less obvious. I still can’t really change my sheets, fold my clothes or reach to a shelf to put stuff away, but because I look “so amazing” and have found myself out and about, I feel guilty asking for some of these things. This is my own shit. I know people will continue to help me and I have come along way to know I can ask, so I do. But it does not come easy.

A really great thing to do is “I am giving you space because I know you are all set for the first few weeks but I would like to come over in three or four weeks in the morning to bring you some lunch and do some chick things I know you need. What day, the week of_______ is good for you? I can come for a few hours.” This can be a text or a phone call. Super kind and effective and most importantly helpful.

If you want to send flowers or a plant, try to do it after the first few weeks to space out the love. It is really awesome to get flowers after the newness of the post surgery starts to wane. Don’t get me wrong, flowers and kind gifts are always appreciated. They are so loving and bright and create a happiness I can’t explain at anytime.

Let’s say, you have run into someone who you heard about, but haven’t sent a card yet, this is a nice thing to say. “ Alayne, (if their name is Alayne) heard you had a double mastectomy and are recovering, just wanted you to know I am thinking about you.” A follow up card is cool too if you feel like it that says, “It was great to see you, I am thinking (or praying) about you and your recovery.”

Acknowledging the pain, the trauma, the experience in whatever way is the best way to help someone. I can’t stress this enough. Otherwise, it is that awkward energy where I have felt I want to scream from the rooftop, “BY THE WAY, I JUST HAD A DOUBLE MASTECTOMY AND MY UPPERBODY FEELS LIKE IT BELONGS TO SOME ALIEN.”

If you have someone coordinating your post care and I highly recommend asking for this help, seriously this was the best thing I did for myself, let people bring food, let people come over and fold clothes, make your bed or whatever things you need to feel calm and less anxious. I know for me, if my house is in disarray, I really feel out of sorts. All help has been great, but as a control freak about the way my house looks, I have to be willing to let dishes get put in places they don’t go, beds made in ways I may not make them, clothes folded in ways I may not normally fold them etc and all of the other bullshit items in our lives we place importance on that in the long run miss the mark if we forget to acknowledge the action behind them.

If you can give a few hours of your time to sit with someone who is recovering without having to ask lots of questions about their needs, offer help. If you can make a dinner or give someone a gift card to order dinner or lunch out, this is another great thing a few weeks out.

I think the worst thing any of us can do is to not acknowledge the trauma thinking it is going to somehow remind someone of something that is impossible to ignore anyway. I remember attending Shiva for a client of mine who had tragically lost her son. She was happy to see me and said something so profound, “Alayne, in times of struggle it is not the people who show up you most remember, but the ones who don’t.” There was so much wisdom to this. I am so grateful for the gracious help I have been privileged to have received, the people who have shown up with physical presence, and emotional love, the intangible prayers and thoughts, and the messages from total strangers who have enjoyed reading my writings and have been helped by them. I don’t focus on the ones that haven’t shown up, but their absence is impossible to miss. I hope that this is helpful for those people who don’t know what to say so they don’t say anything. There is always time to say something no matter how far away from the time.

This is in no way an admonishment of anything or anyone at all. I must remind myself how much of this list I have done prior to my cancer. This is merely trying to engage the conversation so that it serves as information when the time comes so our choices of language and actions can be of better service.

Besides the random acts of love and kindness, while I am busy making lists, I thought it would be helpful to make a list of the things that made the last two weeks go super smooth. This list is in no specific order.

  • Make sure you have button down short sleeve and long sleeve shirts, 100% cotton is the best. These will save you in both day to day movement and sleeping and fuck the size, buy super big. You will not want anything clinging to you. A few nice cotton sweaters to wear over this to “dress up” the t shirt if you go out and want to camoflauge the bulging drains. My friends bought some as gifts for me at Khols and Target.
  • There will be a picture of a pink strap at the end of this that a sister breast cancer survivor gave me for when I showered. I couldn’t have showered as well without it. Thank you Ally.
  • Two items were recommended to me that if I had had would have been useful but YOU DON’T NEED TO SPEND THE MONEY. Remember breast cancer is BIG BUSINESS.
  1. A camisole made specifically with inside pockets to hold the drains. ($80), but apparently insurance covers some of this. Useful if you have to get back to work, I suppose, but like all of those super cute infant clothes we get at showers, it is the onesie with the snaps our babies stay in for most of the first few months.
  2. A lazy boy recliner. This would have been really helpful but not so much that you need to buy one (I almost did and glad I didn’t)
  • Giving a dear friend complete control over scheduled visits and caring time, dinners, etc and a key to your house in case the door is locked and she needs to get in. This was the best. I had someone scheduled for at least three hour care visits for the first week. THE BEST THING YOU CAN DO FOR SOMEONE.
  • Even better when those someones came over, they went on auto female pilot folding, cleaning, straightening intuitively taking care of my homespace without a question.
  • Creating a drop off space that doesn’t require you having to answer a door or having to visit if you are too tired where someone can just leave something for you in a place that you can get to when you are up to it. This was a great way to save sanity.
  • Say the truth on your cell phone voice mail message and an auto email reply so you get a free pass on taking care of yourself.
  • The self induced pressure to write thank you notes is something to be prepared for. I wrote about twenty as soon as I could muster up the strength, but getting a box of thank you cards from a friend was a great help as I realized that I had run out when I went to write them. I don’t think most people expect a thank you note a minute after receiving them, but my grandmother’s voice was hovering and I couldn’t rest until I wrote them.
  • On that note, as gifts of dinners and flowers and books start to flow, write down in one area who they are from, you will not remember and I am sure I have forgotten to send a few. I started saving envelopes with return addresses so I wouldn’t have to look up the addresses when it came time to send the cards, this was pretty helpful too.

Holy crap I feel like I am writing a woman’s guide to getting cancer. Yikes.



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