Pandemic Prompts – #1

Last week, as the Global Pandemic began rolling in, orders to stay indoors and to not go out of our homes began in earnest.

And just like that we all started to ask the same question:

“What are we going to do for the next few weeks at home, in isolation?”

In response, a tidal wave of ideas, content, and options to help keep you busy, motivated and productive began poring in. More and more every day.

So now the question isn’t so much, what will you do, but how do you choose?

How do you choose when the options are endless? And what are appropriate expectations for yourself and others during this strange time?

When we have so many choices and one little body that has finite energy and emotional bandwidth it’s a sure bet we will enter the overwhelmed state of Option Paralysis.

What should you do?” is what we all want to know, but, “What can you actually GET yourself to do?” is the question that is more than likely tripping most of us up.

This is an age old tension that is exacerbated in times of stress: while our brains go into hyper drive and start making lists, charts and graphs, your body can simultaneously become more and more unresponsive, heavy and resistant.

Right after your energized pep talk to yourself your body probably responded by regressing into an overtired and lethargic equivalent of a five year old who doesn’t want to do anything but sit on the floor and cry.

Then all of you is crying, Body, Heart and Soul.

How will you find your way when nothing is as it “should” be? How in the midst of so much new chaos and input, do you even figure out what you need and/or want?

But more importantly, how do coax your body out of the fetal position and toward the shiny object of a good book, self care or something “productive,” so you can start to feel at least semi okay again?

The questions from this poem invite us to consider that our bodies may not be the issue. It’s entirely likely that you haven’t moved because your body has no other way to tell you that something, (an expectation, process, or how a physical space is set up, etc…) isn’t working.

The body is communicating the only way it’s been given, through shutting down, pain, tension, tears, emotions, feelings and movements. If something isn’t working, maybe don’t push through, ignore, throw a fit, or bully him/her into submission. Rather, as gently as you can, listen for what your body asking you to look at, address or change.

In many ways, this global crisis has been made worse by our reluctance to listen to our bodies. As a society we have rewarded pushing through and ignoring symptoms. Listening to our bodies takes practice and intention and begins with noticing what feelings are coming up and what those feelings are asking you to name.

It’s okay to not know what’s going to happen tomorrow, and it’s okay to take time to let the scared, confused and grieving five year old in you hug your stuffed bear and calm down naturally. It’s good to go slow and ask yourself what sounds good and/or right for you to do next.

In my experience, the answers often won’t have much to do with productivity at first, but may prompt you to establish some boundaries and set up some safe or creative space for engagement with whomever and whatever you need to engage with.

Go slow. Take your time. Allow the limits of life right now to be re-framed as creative challenges. Let your body tell you what’s next, and believe him or her when they say, “The way you are trying to force yourself to do something, it isn’t working.”

Trikafta is here.

If you haven’t heard, Trikafta, aka The Triple Combo, was approved by the FDA last Monday (October 21, 2019). This is a breakthrough medication that directly targets one of the main Cystic Fibrosis genes. Those of us who have at least one copy of the Delta F508 mutation, which is about 90% of the CF population, will be eligible to try it. 

The results thus far have been hugely promising as many trial recipients have seen an increase in lung capacity, decreased mucus production and lung infections, and in many cases it has drastically improved overall quality of life. All of that, however, is not a guarantee that it will have the same effects for everyone and it also doesn’t mean all our bodies will be able to tolerate it. We each have to do our best to determine if and how it can benefit us. 

To someone not stuck in a loop of sickness, recovery and managing symptoms, it can seem like the math is easy: Sick + new treatment = better. 

But better is relative to where you are starting from and each person’s particular case. Therefore, managing expectations is a major component to this equation. 

For some of us better would the ability to make through a trip to the grocery store without having a coughing attack. Or another worthwhile improvement would be to not need supplemental oxygen, which would allow us to move about more freely without cords, tanks and looking so sick. Better could also mean less hospital admissions and/or a lessening of anxiety induced hyper-vigilance in coping with our disease progression. And some of us will hopefully find ourselves being able to return to work or school, start a family, and/or fulfill some big life goals. 

It’s important to understand however that new treatments are often packaged within language like,  Maybe, Hopefully, Possibly, and Soon. When these words are coupled with other alluring terms such as, More, Better, and Longer, the imagination can’t help but to start entertaining stories of what could be. “Maybe” the new drug could help me feel “better.” “Hopefully” it will enable me to do “more.” “Maybe” it could “possibly” even allow me to put off transplant “longer,” or at least add some years to my life. When can I get my hands on this drug? Soon. When could I start to see results? Also soon.

If you’ll notice, nothing that I just said painted an exact picture of anything. Like a good PR campaign, all the words are subjective, abstract, and opaque. At the most they give us permission to move our imagination toward positive outcomes rather than negative ones. Ultimately though, these words act as more of a Rorschach test than as a definitive picture of one’s future life. Because, just like a Rorschach, we each see what we want to see. It doesn’t describe anything of physical substance beyond our own subconscious biases.

We cannot know if or what Trikafta will allow us to do prior to starting it. All of us, no matter our health, have to learn to navigate hope and statistics with fear and opening ourselves up to possible disappointment. The small number of cases that don’t respond to the treatment, have horrible side effects, or that absolutely cannot take it, is part of the math that we have to do. Are we willing to risk hope, and our bodies for an unknown better

For many of us the answer is an unequivocal YES. But it’s personal. We all have our own path to walk with this disease. Therefore if you are someone supporting a person with CF who can take Trikafta, please don’t just hope for better and only ask, “is it working?” Instead, step back and ask about how they are holding hope and what they hope better can mean for them. Give them space to tell you all the ways this news is exciting, frustrating, scary and/or guilt inducing. This medication, like all the ones before and after it, is not a beginning or end, but rather part of their journey. We can’t let our imaginations distract us from staying current to what is happening in real time, today, in our bodies, hearts and emotions as we decide to say yes, again, to hope. 

How I confronted my fear of CF Clinic

I had my regular CF check up today, which happens every 3 months. I used to dread these appointments to the point where I would feel physically ill. I thought I would share how I finally confronted that anxiety and learned to advocate for the kind of holistic care I needed.

If you find these videos helpful I’d love it if you shared them! Help raise #cysticfibrosisawareness and that #mentalhealthmatters

#beanadvocate #speakup #askforhelp #youarenotalone

My contribution to Cystic Fibrosis Awareness month

May is CF awareness month and I wanted to do something to contribute to the conversation in a way that felt true to me.

So I’ve decided I wanted to try my hand at doing a video series! I will be taking you through conversations that having Cystic Fibrosis has both prompted and required me to have with myself, others and God.

My hope is that by giving you a glimpse into how I process my life with illness it opens up the possibility for richer and more connecting conversations with you and the world around me.

Here is my first one. Enjoy!

A poem for 2018

In this season of hesitation
I am learning bravery, 
and to ask,
why do I pause?
where is the fear taking me?

I remember that God is good
all the time,
and especially on Mondays,
when movement is easier.

I say goodbye to unhelpful questions
that keep me paralyzed and afraid of failure.
I say hello to all that is before me: 
awkward moments, uncertain hours, 
 a racing heart -
the feel of YES.