Living with Idiopathic Subglottic Stenosis: How Lucy Found Calm

Lucy had been living with idiopathic subglottic stenosis (iSGS) for almost 17 years when we first met. And we didn’t even meet for a mindfulness session. We met to get her website done. (If you haven’t come across it before, iSGS is a rare condition where the airway just below the vocal cords becomes narrow. It mostly affects women, and “idiopathic” simply means no one knows the cause.)

At the time, I wasn’t offering mindfulness and grounding sessions for people living with iSGS. Because I didn’t even know such a thing existed. Even though I was practising mindfulness and grounding to help calm the anxiety I had experienced.

The Spotlight Call and the Shoebox

When I first met Lucy, she had difficulty breathing. And it was noticeable. However, she was quite determined to get the project going, and got on a spotlight call with me (a session where I listen to my clients’ stories and draft them before I do any web-design work for them). That’s when I learned more about her struggles with iSGS and all the surgeries she had been through.

And as she shared more from her life, an interesting shift happened. She felt better. I noticed how she lit up whenever she talked about her sailing days, and since I had never been on a sailing boat myself, I asked her to dig out some photos. They were in an old shoebox she hadn’t opened for years. She always talks about how opening that shoebox and looking at the pictures from her sailing life brought her joy. It was as if she had reconnected to a part of herself that she had forgotten. Those pictures reminded her of who she really was. Not just a lone iSGS sufferer, but a leader. Someone who had been on a five-year, round-the-world voyage and helped keep the crew together, and who, at 25, was the first woman to qualify as a skipper with the military.

This was no small reminder for someone who had given it all up by choice, to be a parent. Turns out she first experienced difficulty breathing during her second pregnancy. And only after being misdiagnosed with asthma at first did the doctors come around to identifying the true cause: iSGS. (Sadly, this is a common story with iSGS.)

From Web Design to Mindfulness

A follow-up to that spotlight call was more sessions, where, without even intending to, we started doing more mindfulness work. Lucy had the intuition to probe more into what I did beyond my web-design work. That’s when I shared with her the other side of things I was passionate about, and she wanted to have more of that.

Slowly, I unravelled the mystery of the mind for her: the negative patterns, and how I had overcome them through mindfulness and grounding. Lucy was a great student. She kept showing up for every session, and our work together got a further boost when I started offering morning mindfulness and grounding sessions, Monday through Friday.

We started this two years ago, and to this day, we meet every weekday morning for 30 minutes. Weekly coaching sessions coupled with these morning meditation sessions have helped Lucy get a handle on her situation and look at it from a totally different perspective.

While Lucy, and everyone like her who has been living with iSGS, would like to find a definitive cure for it, she no longer worries about when or whether that cure will come. Rather, she has now learned to switch her focus to living more fully.

Why Lucy Dislikes Saying, “I’m Living With Idiopathic Subglottic Stenosis”

Lucy does not like to think about herself as someone living with iSGS. Because she wants to look beyond it.

Yes, it is a part of her life. She still deals with it now and then, including getting medical attention when needed. That hasn’t changed. What has changed is the time between her surgeries, which has been getting longer, and in between, she has been breathing more freely. Lucy feels our work together has played a part in that. It doesn’t replace her medical care; it has only stretched the time between it. She also likes to think she can lead a normal life without having to constantly think or worry about it.

And I’ve been quite supportive of this attitude, for it implies that she is not going to let a disease become who she is.

Together, we’ve worked on the psychological side of iSGS, and the last thing she wants is to worry about the condition.

This approach has helped Lucy in a big way. She isn’t constantly thinking about her breathing or what may come of it.

Not by being careless, but by being calm around it.

Now, when she is finding it difficult to breathe or is coughing more, she just smiles and acknowledges what she is experiencing. Sometimes we talk it through together and look at what might have triggered it.

Does that always lead to surgery? No. Could she be thinking and worrying about whether it will lead to surgery? Yes. But she doesn’t.

She just keeps a check on her peak flow meter (a small handheld device that measures how fast she can breathe out, so she can keep track of her airway), and that’s about it.

Why I Think Mindfulness and Grounding Have Worked So Well for Lucy

I can’t take full credit for all the progress Lucy has made since we started working together. A lot of credit goes to the fact that Lucy has been big on holistic health. She leads an active life. Keeps her diet in check, and does everything she possibly can to be as healthy as possible. She also likes to get to the root cause of things. As she puts it, if your boat has a leak, yes, you man the pumps, but you’ve also got to find out where the water is coming in.

All while going through life’s various other challenges. So it’s not like she had it easy. She didn’t, but she didn’t allow any of that to become an excuse for not striving toward a better life.

Of course, what mindfulness did for her was help her break negative patterns of thinking, which were the biggest stumbling block she had to overcome.

What sets Lucy apart is her willingness to learn, to adapt, to remain open. These are qualities that make it easy for someone to receive help and guidance.