The Speech Caregivers Haven't Practiced

I have never done an official Meyers-Briggs test, but if I did, I have little doubt that the first letter would be E, for Extrovert.  In my professional life, I facilitate large trainings. I lead video conference calls with people from around the country. I walk into new schools and sites and I connect with teachers, tutors, and kids.  When it comes to communication, I am outgoing, comfortable meeting new people, at ease speaking in front of crowds, and totally fine with small talk. Need to put someone at the table to keep the conversation moving in the right direction, or even just moving at all? I’m your gal.

In stark contrast, the four times Sean and I have attended Fanconi anemia conferences, my communication scale has tipped so far to the introverted side that I didn’t recognize myself. It’s a fascinating meta-cognitive process in those moments, when I see a microphone coming around the circle towards me and I feel the sweat begin to form, the butterflies begin to flutter. Meanwhile, my thinking brain shouts over the din of chaos my emotional brain is creating, saying, “Dude! You hold a microphone for a living. What is your deal right now?”

My “deal” is that these conferences fill up every one of my pores, my nerves, my brain cells, my gut, my heart.

  • There are therapy sessions where we sit in a circle and share our stories and feelings.
  • There are social events where you meet new people that you are scared to become friends with because they might be gone by the time the next conference rolls around. 
  • There are coffee breaks where, at the cream and sugar station, fellow patients and caregivers jump from, “Where are you from?” to, “When was his bone marrow transplant?” before you’ve even stirred your coffee.
FA mtg.jpg

There are scientific sessions, where researchers and doctors show PowerPoint presentations including graphs on how long my husband might live and photos of ways he might painfully die.

 

  • There are appointments with researchers where they use high-tech equipment to look deep into the patients’ mouths, during which you pray they don’t find anything concerning, and others where patients and caregivers (they need control groups) spit into cups, fill out surveys, and give blood samples.
  • There are fundraising sessions where they stress the importance of raising money for research because, no pressure, but if you don’t, a cure won’t be found and your family member will die. So, get baking, honey!

Add to these back to back events that being a caregiver while on “vacation” means keeping a watchful eye on the patient to see when he gets to be physically, mentally, emotionally, and/or socially spent and needs a break. It means keeping him away from the person with the cough, making sure he eats, giving him permission to nap instead of going to a session, attending that session to take notes on his behalf, then telling him the details, minus the parts about how he’s doomed, etc. etc. etc.

Additionally, it means keeping tabs on how things are going at home, a dozen states away, both at work and with our daughter.

Throughout all of this, there are no ounces left in me to be used for small talk, socializing, or contributing to the conversation. I keep my head down, don’t chat much, and skip the social gatherings, all in the name of self-preservation.

 

But something happened at a “Spouse/Partner Lunch Meeting” that changed all of that.

 

In the three days we’re together, they attempt to gather people in every possible configuration so that all the feels can be discussed from all the angles with all the people. To put this lunch into context, let me take a moment to explain that until recently, Fanconi anemia (FA) was considered a childhood illness. It’s a genetic disease and most people are diagnosed at birth, or at least by their 10th birthday. Last I checked, median age of death for a person with FA was 31, (Sean is currently 39).

All this to say, that this gathering of adults with FA isn’t huge. There are typically 40ish people there, including patients and caregivers, many of whom are newly adults and still single. Being a married adult with Fanconi anemia is rarity within a rare disease. There are few of us out there, therefore that are FA spouses.

The lunch was attended by the ten spouses/partners present at the conference and was facilitated by the resident social worker. In other parts of my life, I would be the one facilitating the conversation or at least an active participant. Here, I was just focused on the food and getting through another hour.

The social worker began with a generic statement about how it must be challenging to be a caregiver, followed by an intentionally pregnant pause during which she looked meaningfully around the table, waiting for a response.

The spouse at the table who has been both married the longest and whose partner also has the most severe medical situation of those represented spoke up first. 

"I find that it is a gift to be a caregiver. I am so glad that I get to be with her through all of these hard times.”

Another spouse chimed in, nodding, smiling,

“My husband and I are a great team. All of this makes us stronger as a couple and I am so glad to be his caregiver.”

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While listening to these people with the same job title that I have, this elite group of FA partners, I had picked up an asparagus spear with my fork. As they spoke, however, my eyebrows furrowed, my chin tilted out at an angle, and then, on its way to my mouth, the asparagus took a U-turn as I put it right back down on my plate and looked up, my voice making its first appearance at this conference.

What was it that pulled me out of my introverted cocoon in that moment?

  • Astonishment. (Isn’t this the safe space luncheon where we can say how we really feel?)
  • Betrayal. (Aren’t you supposed to by my peeps? The only ten people on the planet who get how ridiculously life-shatteringly difficult it is to be a spouse and caregiver to a person with FA?)
  • The need to shake them free of that speech that they had so clearly practiced over the years. (Have you said that line so many times that it’s all you can say? Even when someone just gave you an out?)

With my hands free of asparagus and cutlery, I spoke, surprising those around me both by the sound of my voice being used and with the words that came out.

"I appreciate,” I began, “the sweet words you are using and I acknowledge that there are moments for gratitude within this crazy life we live.” (Nodding and smiling from around the table.)

“AND,” I went on,

“I have to ask: isn’t this the place where we don’t have to give that speech? At this table, with this group of people, can’t we say out loud that THIS. IS. HARD? That being a caregiver for our partners is not what most of us signed up for? That watching them go through hell was not part of the vision of our lives together? I get that the rest of the world might not be comfortable processing that kind of truth. It’s easier for them (and our partners, I’d guess) to hear what a gift and a privilege this caregiver business is. However, the social worker just acknowledged, said out loud, that this is not always easy and is giving us a place and a space to say that.  I, for one, think we should take advantage of that in this moment and to start admitting that this is hard when we are in other circles as well.”

Finished, I picked up my abandoned asparagus and took a bite.

The responses were mixed. The two Grateful Gretas who had spoken before me seemed shocked, as if it never occurred to them to have, need, or use a different speech than the one they were used to giving to the masses. The social worker tried to mask a satisfied smirk, as if to say, “Now we’re getting somewhere.” Others at the table seemed relieved, as if someone spoke truth into the air that they had feared was in their heart alone.

My reasons for breaking my code of silence that day are the same as my reasons for sharing my writing on this site.

I want to say publicly, clearly, unequivocally, in as many formats as possible, that being a caregiver is hard work.

It is relentless, unending, all-consuming work. “Hard” doesn’t just cover the millions of daily tasks, the lack of sleep, the endless multi-tasking. The deep-down searing part of this is watching the person you love suffer. It is knowing that you’re doing these tasks because they can’t and that they can’t because they’re too ill. It is knowing that your time together is limited (Please don’t say, “All of us have limited time! I could get hit by a truck tomorrow!” Go to a three-day conference looking at graphs detailing how you should have already been hit by a truck years ago and that the trucks are outside waiting for you, and then we’ll talk.) It’s realizing that the future you’d once pictured will not come to be, nor is your present what you’d expected.

Has this “journey” (don’t get me started on that word) brought Sean and me closer together?
Absolutely.

Am I glad that of anyone, I get to be the one to be his caregiver?
100%

Have I learned lessons and gained gratitude throughout it all?
Definitely.

But I don’t need to write about that. Those are the well-practiced speeches you hear from caregivers everywhere. I’m here to say that there is more to those speeches, there is more to those caregivers, and there is more to this role than you can imagine, all sitting there unseen and unappreciated in the negative space.

 

Eighteen months after the above-mentioned gathering, Sean and I attended the next conference, this one even more challenging for me, as our three closest friends with FA had passed away in the previous months. This time at the coffee station, our friend who had been the first to chime in with his gratitude at the lunch at the last meeting said to me and a few people around us, “…but this stuff is hard, isn’t it?” He looked proud as he said it, satisfied with himself, almost excited to be saying the words out loud, and as he did he looked meaningfully at me as if to say, “Look! I’m doing it! I’m admitting things are hard!”

This moment made me so glad that I had put down that asparagus, spoken my truth, and given that unpopular speech, opening the door for others to do the same. 

Oprah said recently,

What I know for sure is that speaking your truth is the most powerful tool we all have.
— Oprah Winfrey

Agreed. For most of us caregivers (or, let's be honest, any humans living in the world) this is going to mean learning a new speech. It's not one we have to write, the words are right there in the genuine, hard, ugly moments of our days. But it is one we'll have to practice saying out loud. Will it be easy? Pretty? Simple? Nope. Just as we aren't used to giving these speeches, others aren't used to hearing them. But I'm willing to bet that the listener will be grateful (after the initial shock of hearing something other than, "Fine, thanks!") to know how you're really doing and that witnessing you speak your truth may inspire and embolden her to do the same.

Let’s all practice our yet to be spoken speeches, put down our forks, speak our truths, open doors, and shine light on what's right there hanging out in the negative space.