That quote hit me right in the gut. It feels more like a command than an invitation in the best kind of way. I’ve been in a really deep feeling place these last weeks. Internal + thoughtful. It’s been three weeks since I had the dilation procedure on my trachea. I’ve had some time to enjoy breathing (understatement of the year, I’ve been positively giddy over it), time to process all that we learned in Boston and time to decide what comes next where my health is concerned.
The top three questions I’m getting asked are: How are you? What did they say? What happens next?
How am I?
I’m mostly r e a l l y good. I’m enjoying breathing A LOT. I find myself saying I LOVE BREATHING all the time. I’m thankful for it all the time. I used to see people running, dancing, laughing on movies or in real life and feel sad. Now I feel excited and I find myself saying, “I can do that!”
image by Lizzy Flanagan
There was a moment at my dear friends wedding on the Cape just after the dilation that brought me into the present of I CAN DO THAT in such a sweet way… we were all out on the dance floor, it was nearing the end of the night. My post anesthesia body was really tired and I was ready to go until my friend Kate looked over and saw me dancing and with so much love and excitement in her voice said, “T H I S is just what you wanted!” In that moment I could see and feel us all in slow motion. I could feel the thump of the music in my chest and vibrating all around us. She was right! It was (is) what I’d wanted – to be able to dance and sing and play. I immediately forgot that I was tired and I danced like I meant it… I flung my hair and jumped up and down giving my sticky strapless bra a run for it’s money (those are the best things ever, by the way). I memorized the moment and literally breathed it all in. I remember smiling so big. I remember giggling at Cliff’s signature moves and thinking how much I love having him as my partner. It was all red faces and fist pumps in the air, pure joy. I can’t even believe there’s a photo to go with the moment. Can’t. even. believe. it. Pure gratitude.
Healing can be spontaneous or work. I’m currently in the working portion of this program. I feel my body processing out the anesthesia, the post procedure meds and the experience itself. I’m cycling through tired, angry, frustrated and sad. Some days I’m able to articulate what’s happening inside an others it just washes over me. I’m spending time in the archives of my life and going back to places that need healing — namely, my parents divorce.
I’m 35 and I can’t believe I’m still healing over my parents divorce. Some days (most days) I resist it HARD and think good grief, I thought I’d healed a l l that in therapy. Others I soften into it and see that sweet little 4th grade version of myself and feel so much for all she was experiencing during that time (and now). Life keeps giving you opportunities to heal until you do the work. Sometimes it’s a little nudge, sometimes it’s a smack in the face. Lately it’s felt like I’ve walked right through a plate glass window.
I believe in the importance and all out necessity of feeling your feelings, and letting them move through you (instead of getting pent up and stuck inside you). I’m staying present to that as much as possible and letting my body and spirit move through and out of the muck. I’m asking my body if it can allow the energy to move (something my sister reminds me to do). I’m asking it what it needs from me to help? Some days that’s a swim or a jog, others it’s just to sit quietly in meditation and sometimes I haven’t a clue. I’m forgiving myself and my parents in all kinds of scenarios. I know my folks did the best they could do at the time. I see that really clearly. I love and appreciate them deeply for that. I also know that their split changed me and I’m giving myself permission to take down the armor I built up at such a young age. I’m reminding myself that I’m safe and loved. I’m reminding myself that I always have everything I need, that I am whole health and that happiness is my birth right (pssst, it’s yours too!)!
What the doctors said:
The scar tissue is back. We’d hoped it would be scar tissue at the surgery site something easy to scoop right out of there but nope this scar tissue is thick and stubborn and has invaded into my vocal cords. It looks like a Tim Burton set in my trachea with pink and white marbled scar tissue growing like tree roots into the vocal cords. We also learned that the right vocal cord joint is paralyzed likely from scar tissue growing into it and basically concreting it in place. There’s nothing they can do medically to help. It’s one of those “let’s just keep an eye on it” situations. The good news is that the joint is stuck in a good place which means I can still use and regulate my voice and that’s a HUGE win! I can’t possibly imagine not being able to use my voice! I’ve got so much to say! My doctor says it would be great if it’s a year or more before I need another dilation. I’m thinking it would be great if I never had to have another surgery or procedure ever again! Yes, that’s the option I’m choosing.
Now that there’s some space between me and all the information it feels like just that… information. I don’t feel doomed, devastated or afraid. Those are all things I’ve felt in the past but this time is different. I know (KNOW in that way that’s deep to my core) it’s all a process, it’s all happening for my highest good and I’m trusting that this thing will continue to transform in a way that is perfect. I’ve given up predicting how it’s all going to go down because I suck at predicting the future but I can say that I FEEL my body healing.
What happens next?
I’m fully engaged in a healing journey. We’re headed to California next month in the RV! I’ve been having sessions with helpers and healers and professionals all over the US (and the world, thank you Skype). I’ve been spending more and more time in and near water because it just feels so good.
We were planning a water fast but after talking with an Ayurvedic practitioner (and being warned by one of my best friends who woke up having dreamt of me and said “DO NOT DO THAT WATER FAST, I feel so strongly that you don’t need to do it”) I’ve decided NOT to do the water fast. Cliff is still going to do it so I’ll be there checking in on him between my Ayurveda appointments. Oh and are you ready for this one… the Ayurveda gal is in the SAME CITY as the water fast. Well, thank you Universe!
Always always remember that there’s no one size fits all diet and there’s no one miracle cure for what ails you. When it comes to your health the only right answers are the ones that feel best in YOUR body.
What I’m learning:
- I’m learning to honor my needs and most specially not to put them off. Even my most basic needs – like holding it when I need to pee. Seriously, anyone else sit at your desk way too long and then realize you’ve had to go for over an hour?
- Matter can change. Scar tissue can change. When this first started 10 years ago it was subglottic (below the glottis) and now it’s invading my vocal cords. While that is really “bad” news in the sense that medically there’s nothing to be done it’s “great” news from the view point of the potential for this scar tissue to change. IT CAN go back to the nothingness from whence it came and that’s exactly what I’m creating.
- The power of a group is mighty. I’m a member of a Facebook group for folks with tracheal stenosis. It’s been a really safe and loving place for me to be vulnerable, receive support from people who totally get it and to celebrate the deep easy breaths that are flowing right now.
- It’s ok to ask for help. From your partner, your friends, your family, your community (even if it’s an internet community). Thank you all for being here and for holding visions of me breathing with ease for the rest of my life.
- I’m learning that real healing happens when I slow way down and have FUN. I’ve been much too serious, much too busy, much too much of a bunch of stuff and fun is setting me free.
- I’m seeing how important it is to own your situation but not attach to it. To be present but not self loathing. I so badly didn’t want this to be my story. I didn’t want to be the girl with scar tissue in her trachea and yet I’m so grateful for all that has unfolded as a result of this weird condition. Weird has always been wonderful.
To giving each other permission to tell our stories by sharing our truths. I love you. I appreciate you.