I can’t speak.

I literally cannot talk. A few hoarse words before my vocal cords totally give out and there is no sound above a faint whisper.

I’ve been this way for just over 48 hours and I can’t believe it. 

I very rarely get sick (god bless my stellar immune system) and when I do, I might get hoarse, but I cannot recall a case of laryngitis this severe- ever. 

Advil. Mucinex. Gargling. Resting. Steaming. No improvement. Talk for more than 10 minutes and we are back to no sound at all. 

I’m going out of my mind because I have a lot to do, a lot to say. Empathy is my trade and words are my currency.  I need to talk because I have important things to explain. This isn’t a good time, sickness Gods. Please afflict me with something else or save this for another time. Remember… ahem… what I do….

COME ON! I minister to the terminally ill, I speak about their choices and I talk about ways to navigate their circumstances. I don’t sing, I don’t dance, but I talk. Of course I try to spend a lot of time listening, but if my job is to provide the benefit of my experience, I need to use my voice!

And yet, I’m old enough to know that when self important thoughts fill one’s head, there is a lesson trying to be taught. Certainly, this is no different.

So I’ve contemplated my silence and I think I have been reminded of a few things. Perhaps if I share them, those aforementioned sickness Gods might restore my speech.

  1. Maybe stuff just happens and that is that. Strong possibility, no doubt.

In my line of work that contains so much spirituality and meaning, one can often discount the possibility - or reality- that sometimes “it is what it is” “shit happens” and “what will be will be”.

  1. My speech has been silenced because I am trying to teach a lesson someone has to learn for themselves.

Spoiler alert to gentle readers who don’t know me personally: I am a control freak. Especially in palliative and hospice care, I have seen enough things “go badly” at end of life that I can get - admittedly- hyper focused on orchestrating things to not “go badly”. Fact: that is not always my call. Sometimes things have to play out in a way for that particular person in that particular situation to see or learn what they need to see or learn. Every time I get frustrated with this, it brings me back to my own sons wanting to buckle themselves in their car seats. As their desire for independence grew, both Ryan and Sean would swat my hands away as I reached in to fasten their buckles securely. I would stand by and TRY to say nothing, not interfere, all the while screaming inside with the knowledge that I could do it better and quicker and this was WAY too important to mess up. You know what? Given enough time, they did it right. In hindsight, those would have been perfect moments to exercise trust and faith, LOSE MY VOICE and allow them to figure out what they could do for themselves. 

  1. Could it be that my lack of self care practice has come back to bite me in a way that stings?

Alright, I’m not going down alone on this one. Friends, we ALL burn the candle at both ends. Some of us, myself included, will enter a season committed to self care and boundary setting but more often than not, we slip back into old ways and pay less attention to our own needs. I honestly tried this summer to keep up with all my physical and mental needs-and my family’s needs- and my patient’s needs. I made it, literally until the Friday before the first day of school. So close. But laryngitis and this crud caught me by the tail and reminded me that no one- NO ONE- is exempt from taking care of one’s self. The irony is I wasn’t afflicted with a sore shoulder or even an upset stomach. I was sidelined with something I couldn’t power through to keep doing what I thought I needed to do - my job. Given my schedule this week, only voicelessness would have kept me home today with my phone turned off. Coincidence? I kind of doubt it. Ultimately, the body keeps the score.

  1. Do I need to better understand the struggles of my patients who feel - or who actually have- no voice/ no ability to verbalize their needs/ fears/ goals?

So yesterday I woke up not feeling great, but thinking I could power through and see the patients I needed to see. My first patient was a 71 year old very kind man with ALS that is rapidly progressing. How ironic that I was the one in the conversation that was hard to hear/ understand. In his particular situation, there was a lot of information to cover and questions to answer. 75 minutes into the meeting, this sweet gentleman stopped the meeting and said, “It has been a long time since I have been able to take care of someone else. Please let me take care of you by asking you to stop talking. We can get back together when you feel better.” Being with the gentleman not only reminded me how frustrating and frightening it will be for him when he loses his speech, but he also taught me how important it is for people to whom we provide care be allowed to provide care to others. 

My second patient was one I’ve come to consider a friend- my age with an advanced cancer. We met at her oncologist’s office, with her husband and mother, to discuss the possibility of continuing chemotherapy. Her doctor has already stated that this cancer is not going to go into remission and the chemotherapy, will only continue to debilitate her. This young woman, however, has two young daughters and is simply not ready to stop. There was SO much I wanted to say at this appointment and yet my voice literally wasn’t strong enough: “what are we hoping to achieve with this next round of treatment” “what parameters are we using to define the patient can tolerate this next round” “can we have a conversation about prognosis so that we don’t spend precious time “sicker” secondary to treatment?” I don’t have the answers to those questions but I have the certainty they needed to be asked. I couldn’t because my voice was literally gone.  I made some indiscernible noises and lots of facial expressions that made a lot of sense to me, but no one else in the room understood that. I was also increasingly sensitive to the body language of every one else in the room which was unanimous in: “let’s not talk anymore, OK?” How many patients and families fail to discuss those things because their voices have been figuratively lost? It can be hard to speak up when the questions and potential answers are, very likely, unspeakable. 

Sooner than my family is probably ready, my actual voice is going to come back. I know how this goes. Some time around tomorrow, my cough is going to loosen up and my ability to speak my mind will be back. More than likely, my cold medicine induced ramblings will subside. But for the next little while, I am going to love my voice like a hero back from war- an absence that has made my heart grow fonder and more appreciative. I must continue to use it with purpose for my passion, but remember to care for it, now realizing its fragility. 

I invite you, HOPEspotters, to think of what you use most to deliver your special gifts and implore you to take very special care of it.  I find this time of year to be an intense season: heat, back to school resolutions, families reestablishing routines. Be kind to yourselves and each other. There,  I said it.

Hope and the Great Pumpkin

Sean has had two sleepovers in the past two weekends. He’s exhausted. I am always exhausted. Tonight, as we battled for that last half hour of contentment before resigning to bed, we watched Charlie Brown’s “It’s the Great Pumpkin” and I have so much to say.

As an early disclaimer, I grew up in a Catholic church with incredible priests: men who could take the gospel and make it real and liveable to every participant. Monsignor Mahoney, was one who became a beloved family friend and ultimately officiated my wedding. Father Mahoney caught my attention as a child in his homilies as he often referenced the Peanuts gang. So that my theology goes back to Charlie Brown may seem brilliant, but it is admittedly not entirely original.

For those of you who haven’t seen “The Great Pumpkin” in a while, I am here to provide a brief reminder.  Charlie Brown’s best friend, Linus, is filled with anticipation and joy about the upcoming arrival of the Great Pumpkin.  Per Linus, the Great Pumpkin rises out of the pumpkin patch and brings toys to all the boys and girls. Linus foregoes trick or treating awaiting the arrival of the majestic Great Pumpkin. Linus’s sister, Lucy, is verbally outraged at his foolish belief and behavior. Charlie Brown’s smitten sister, Sally, stays with Linus, believing they will celebrate the Great Pumpkin’s arrival together.

Spoiler alert:  the Great Pumpkin doesn’t come. Sally is enraged. Linus is dismayed. And mean Lucy, in spite of herself, rescues Linus from the patch and lovingly brings him back to  bed. Upon awaking, Linus professes NO remorse to Charlie Brown for his devotion to the Great Pumpkin.

Ladies and gentlemen, I present to you palliative care. Hope. The loud voice of second opinion. Tenacity. Discouragement. Support. Unbreakable faith.

Again, with a nod of gratitude to Father Mahoney for illuminating the theology within the Peanuts gang, I offer these thoughts. The Great Pumpkin is special: whether it be as ethereal as the Holy Spirit, as pragmatic as a symbol of hope, or as allegorical as treatment for advanced disease, that Pumpkin represents something worth waiting for. Linus, ever the representative of humanity seeking the Lord, remains steadfast in his belief of this wonderful thing that he has never seen. In this story, Linus is Faith 101.

Linus’s faith is unwavered by the mockery of his friends and especially his sister. Linus’s faith becomes a clear and shiny hope, an anticipation of a delivery of belief. Linus is every parent of a child with cancer. Linus is a stage IV patient returning to MD Anderson. It isn’t that Linus doesn’t hear the Peanuts gang mocking him, and it most certainly isn’t that Linus doesn’t want to trick or treat. To be sure, Linus takes all of that in but is instead drunk with hope that no one can dare call false because they don’t know any better.

The night in the Pumpkin patch is the perfect allegory for a season of disease treatment. Linus and Sally stay side by side, certain for the arrival of the “Great Pumpkin”. Friends come and mock their choice. They offer the option of leaving for something more fun. Linus at one point becomes so convinced he has in fact seen the Great Pumpkin (which is only Snoopy) he passes out. Eventually, weary from waiting, Sally, the primary caregiver of Linus, leaves in a heap of frustration. Linus seems sad, but remains steadfast in his belief.

To me, the most touching and poignant moment of “It’s the Great Pumpkin, Charlie Brown” comes in a scene with no dialogue. Lucy, Linus’s sister, awakens at 4 am to realize Linus is still out in the pumpkin patch. Silently, she trudges out and assists the very cold and sleepy Linus to bed. She doesn’t gloat, she doesn’t ask for thanks.  This character who has represented opposition to belief in a thing unseen, succumbs to love for her brother and seemingly forgives him for his devotion to a hopeful notion.  Perhaps, she even loves him a little for it.

Many many days, I meet patients and families who remind me of Linus. Boldly optimistic and infatuated with hope. For the love of GOD, if I do anything right in my job, I never ever want to squash that hope or depress their inner Linus.  The challenge is how to break the news that the “Great Pumpkin” they thought was coming, isn’t, BUT there is still reason to stay in the patch with a heart filled with hope. The challenge is to remind Sally her time wasn’t wasted and to encourage Lucy to not wait until 4 am to show her kindness.

I love the Peanuts gang and I love working in Palliative care. And I encourage each of you reading, to spend a moment, in a pumpkin patch, spiritually beside Linus, with a heart full of hope.