The TRUTH of Living with Lyme Disease, Inspired by Glennon Doyle. 🤍
Yesterday was a beautiful Sunday. Or at least the type of beautiful Sunday I have come to appreciate and love over the last few years.
I was laying in bed reading Untamed by Glennon Doyle, halfway trying to ignore the searing pain pulsing through every muscle, joint, and bone of my body. Halfway feeling the pain’s presence, always feeling its presence because it is always, always there. It felt so blissful to rest, like really rest. For once even though I was in excrutiating pain my nervous system somehow felt comfortable and relaxed, and I allowed my entire being to breathe deeper and sink into my pillowy bed.
Despite feeling relaxed, in the back of my mind there is always one thing blaring loud and clear: I’m sick, I’m sick, I’m sick, I’m in pain, this is not normal, will this ever end, how will I go on like this, suck it up, you have to deal with it, this is your reality. On a never ending loop.
This prolonged quarantine time has been interesting for me with Lyme disease because all I have hoped for and fantasized about with my schedule for the last handful of years has kind of come true (in a weird way)… having nowhere to be, with no additional pressure to be “on” or to say yes to things that my body in many ways just cannot and will not do.
Now with starting to be out and about again a bit more and re-entering the world in my own way, my body is on high alert. I feel exhausted all over again, without the exhaustion ever having gone away in the first place.
And when I say exhausted I don’t just mean tired… I mean like ravished deep in my bones exhaustion, impossible to lift an arm for a glass of water, bone deep, crushing fatigue. It is terrifying. Do I talk about it a lot? No. Do you see it on my social media when I am laughing and jogging with my husband and recording podcasts and trying to be a functioning human adult? No. But is it there, behind my smile, every waking second? …Yeah.
So you can imagine my shock when I got to a passage in Glennon’s book where she writes about her first encounter with Elizabeth Gilbert. Two of my favorite writers, so first of all it is my nerdy author dream to think about them meeting let alone lay my eyes on what the passage actually said!! ☁️
In the passage Glennon describes their first conversation, when Liz asked her what brought her to Naples, Florida. Glennon’s response is, “I got neurological Lyme disease a few years ago. My entire body shut down, and I was in bed for two years and popping fifty pills a day. I went to stay in my friend’s place in Naples, and I felt so much better. I moved there temporarily, and I was able to ditch the pills, so I just stayed. I’ve always known I wanted to live by the beach. I guess women have to almost die before we give ourselves permission to live how we want.”
I GUESS WOMEN HAVE TO ALMOST DIE BEFORE WE GIVE OURSELVES PERMISSION TO LIVE HOW WE WANT.
UMMMM !!!! GLENNON !! HELL TO THE YES.
You guys, I was shook. I am still shook.
First of all, I did not know that Glennon had suffered from neurological Lyme. I have been a fan of her writing for years, but I somehow missed this key piece of info. Secondly, this line of writing spoke to my very core in a way that is truly indescribable.
The Messy Truth 💜
Those of you who have followed me throughout my Lyme journey, and even before I got sick with Lyme, have witnessed my unbecoming. I am not who I once was. I have had a handful of near death experiences being sick, but none of those quite come close to feeling half dead every single day of my life.
I know, it’s depressing. I wish it weren’t true and I hate writing it. It’s just a fact. And while I really dislike being anything but positive and optimistic with you guys, as my dear friend Biet Simkin reminded me the other day, “Babe, feel it all. You are not a robot.”
When I showed Jonathan that line about having to almost die before giving myself permission to live how I want to live he instinctively said, “No, that’s not you,” at the thought. And I said, “…Yes it is.” And trust me, I get it!! It is so f*cking hard for the people who love us and show up for us every day and see us at our best, our worst, and everything in between to accept how much pain we are really in. Because to accept it means feeling the hurt too.
I would hate to know anyone I loved was in this much pain. But reading Glennon’s book is reminding me that pain is beautiful. Pain is feeling. Pain is human.
This year in particular I have gone through a lot of phases in relation to Lyme. I have experienced the “I am not going to talk about being sick anymore and I regret ever sharing about Lyme on my blog / social media at all” phase to the “I refuse to be sick and I will only acknowledge my good days both publicly and privately” phase to the “I am doing one more goddamn treatment for Lyme if it’s the last thing I do and then I am done treating it and living in the hell of it forever” to “okay I actually feel like scum of the earth and as a Reflector being I can’t keep this to myself anymore no matter how much I try” and so many other phases. On and on. Another loop.
Anyway, in reading that line I really broke down. I tend to look at everyone I admire (Glennon Doyle being way high on that list) and think, “What an awesome, amazing, inspiring life. If only I had that kind of energy. I miss having that kind of energy. Will I ever have the energy to be a real human again?”
So reading that she, Glennon Doyle, one of my biggest inspirations and one of the world’s most powerful women no doubt, had to overcome the same Lyme-sick exhaustion I am now having to overcome… that hit me right in the heart. And it affirms so much to me — I really feel that we get sick in order to be woken up. Spiritually, emotionally, psychically, all of it. And if you know much about Glennon then you know she is spiritually AWAKE and living her best, most aligned, most human, most real and raw and messy-beautiful life.
I have given myself permission to do a lot of things since getting sick. Like SLOW WAY DOWN, take so much more time for myself, say “no” to things it previously would have horrified me to say no to, cuddle Hudson for hours upon waking up rather than jump right into “being productive,” take several baths a day, focus on the integrity of my brand vs. growing a large company, do a lot lot lot less… but I really have so much more to do on this front.
There is so much I yearn for that I am not currently doing. Writing this soul-deep kind of stuff is one of those things. But if I were to really look in the mirror and ask myself what I still need to give myself permission to do … a lot of things would come right up.
So today Glennon Doyle inspired me to share the truth with you guys. Because positivity is great but honesty is so, so much greater. The truth is…
Some days I am just not okay. Some days I am really, really, really not okay. I worry constantly that this pain will never go away, that I will never again have the energy to spend an entire day out of bed without wanting to gauge my eyes out, that I can go to a family event and not have to curl up on the couch watching everyone talk and spend time together and wonder how they do it… how they have the energy to be in their bodies, present, like living life ain’t no thang.
I wonder if I will ever be able to make plans without having to worry that I’ll have to cancel them, or the much deeper stuff like what kind of mom I will be able to be or how my body will handle being pregnant in the hopefully near-ish future if I can’t even handle the way I feel right now. I also wonder when my stomach will not feel like it has daggers 🗡 piercing my intestines every time I eat or even look at food?
It’s a lot of worrying, I know. Sometimes I put the worrying away and live in the moment and go on a magical walk with a friend and it feels great. Sometimes I just don’t have that luxury. Some days are great, some days I really feel amazing. I choose to share those days with all of you, and I am happy to do that because it gets me through the harder days.
The truth is… messy. If I were to tell you the whole truth it would fill up pages and pages and pages of a whole book. That is my plan. 🤍
In the meantime, trying to tell the truth via one Instagram post, blog post, or email newsletter is just… hard. It feels incomplete. But I guess that is what happens when you commit to sharing your soul with the world. It is always going to feel a bit incomplete and then these heart spill moments will give some insight into what’s going on on a deeper level.
I do feel on the precipice of something deeper, a new level of unbecoming. It has been knocking on my door for a while. It HURTS. It is probably why I find myself crying every day lately, why the ache of it all feels so much stronger than it usually does. I am face to face with it. That’s the real, not fun, but real truth.
I have so much more to say, but I hope my little truths today can spark some awareness or at least some inspiration to face your own truths. In the midst of everything going on in the world right now, I know we are all feeling hard. The truth can be difficult, messy, and feel a bit impossible sometimes. But the beauty is that we are never alone.
Thank you Glennon for reminding me that I am not alone even when I feel like I am the only freaking person in the world who feels the way that I do. I will be manifesting the same wide open awareness to live the exact life I want to be living. Thank you for inspiring me.
I hope so much that I can do the same for you, my sweet reader. I love you all so much. XO