leaning in to fall away
Sometimes life is such a random paradox. So much of my life is beyond what any human should rightfully be expected to bear, yet here I am, the bright spot in my day the gorgeous and perfect rug I bought for our new house (move is 3 weeks from tomorrow) for 40% of it's original price. It's amazing the patience I have to hunt the very best deal and fit when pain makes sleep impossible at 2am, and I'm weirdly excited by that. It's the little things that keep my feet moving along this path from which there is no escape.
Maybe someday the path will diverge. Or the scenery will change. See, I am walking and the path is very narrow with a foot thick and 50 foot high glass walls on both sides. I can see distorted images of what a normal life would look like through the glass, but I cannot scale the wall nor break out. All I have is my naked body and the support and love of others talking to me through the glass and moving along side me. And I see doctors and my therapist and do the tests and the protocols and the research and the everything, all in hopes that there will be a diagnosis or diagnoses to say, "Ah, here we go," and we'll treat the disease and then the glass will crack and shatter and back in the world of the living I will be. I'd take slices and scars from the crash if it set me free.
I am in excruciating pain today. Frustrated. Exhausted. Tired of no answers. There was strong evidence that this might be MS. After a brain MRI, no, it's not. There was evidence of the frequent migraines I get but no lesions. So I am once again emotionally and physically drained. The hope that maybe we could target and treat a specific disease was once again crushed by, "No, sorry. Back to the drawing board." I want to stop seeing doctors and have a break from the tests that continually come back as "nope, not this" and yet I can't just live this way and not try to figure it out.
Yesterday, literally 15 minutes after deciding I would stop seeing doctors until September, I got my baby up from her nap and she had a blowout and needed a bath. Often my husband works from home but he had to go in because company execs were in town, so I was flying solo. After about 2 minutes of kneeling this happened. You can hear me say, "Oh god," from the pain and the emotional strain of having this happen to my body with no control. And the camera is shaking because just the simple twist of my torso to get the camera angle caused my back to begin painfully spasming, affecting my ability to hold my phone steady.
I will tell you the stark truth: I am at the point that a fatal diagnosis would be a relief. It's not a death wish or anything close to that. It's just that at least I would know what is happening. Right now my left arm feels like it is being sawed off. My right has the sensation of being in ice cold water. My legs feel weak and there is the sense of being poked by a thousand needles. My feet and hands tingle like they were asleep and the blood is flowing back in. My rib cage feels like I am being squeezed by a gigantic snake. My neck and lower back hurt so bad it's hard to breathe steadily. I have a hoodie over my head, long pants, and am wrapped in blankets in a 70 degree room yet my extremities are ice. Every part of my body has muscle aches like I did a 6 hour intensive training session yesterday after being sedentary for 2 years...except yesterday I was bedridden but for the minimum effort to care for my children. And the two bigs have autism therapy so when Tati wakes up I need to carry her downstairs, feed her, and tend to her needs until the rest of the family gets home and my poor husband can do basically everything. Keep in mind that Jason also has to work amid all of this.
So, while I don't want to die, it is pretty damn obvious why all of this with no answers on top of what we know is wrong (Hashimoto's, fibromyalgia, chronic fatigue, PTSD, deep depression, GAD) leaves me scraping through each hour and just trying to get to tomorrow while wondering if this is going to be the rest of my tomorrows.
What I don't want is pity. I don't need empty words trying to make me feel better or to make the hearer of my suffering feel useful by saying the right thing. I have a few close people who are a support and lifeline. I have a husband who honestly is a saint in the way he loves me, supports me, and carries the unbearable weight of running a home with two young children on the autism spectrum and a baby with an extremely sick wife, all while being the sole wage earner. I have a frankly stupid and irrational peace that none of this is for naught, a beyond-reason certainty deep in my soul that my god is in this with me and I don't need explanation.
What I do need is to embrace who I am. How I am. I listened to this incredible podcast (multiple times, actually) and a huge, life altering realization cemented in my soul--I WANT to be open. I WANT to say my things. I WANT to be heard. I WANT to be seen. I loved what Glennon said about her writing being her art and not needing to be a lawyer defending it. I can be a lawyer and defend my every thought but I don't want to. I felt in my SOUL when she, around the 18th minute mark, talks about wanting to be known and seen and EXISTING VISIBLY AND AUDIBLY.
I also felt soul reverberations when Glennon said she doesn't even care if she's liked. I have my place in this world where I am cared for and loved and liked. Trying to make people love me isn't why I write. It isn't shameful or wrong to embrace who I am, to do what is right for me. I have so much more peace when I just lean in, do what is right in my soul before god, and not filter my desires and choices and actions through a standard that has been set by Others. And Others is capitalized because my entire life life has been lived by the standards Others have set and say is Absolute One True Only Way to Worship and Be Okay With God.
No more of that. My answer is a loud and resilient NO.
It's time to start living my YESes.
I don't know why this is my story. Why I lived through horrors most people would struggle to believe were really an actual person's real life. Why so many hardships have come and kept coming. Why my heart is one intrinsically bent toward empathy and compassion and I cannot find any patterns of me mistreating people but that has been how I have been treated again and again, particularly in my home as a minor and again and again in the Christian church. And why I now have to be so damn sick and no amount of effort ever helps. Something incredibly freeing to me was around 20 minutes in when Glennon talked about how precious each of us are and yet how not special we are all at once. Nothing I say is really unique or new or different from the rest of human history, but HOW I say it can be the way that someone else can hear what they need to hear. Just like that podcast was for me.
That freed me so much. I'm done with fear and uncertainty and questioning about how to live my life. I'm over worrying that if I grit my teeth to sit down and write this, pushing through the pain, people will think I am exaggerating or even lying because accomplishing this little blog post doesn't line up with the ailments I have described. If doing this makes my body implode and my heart light then that is my choice and I owe zero fucks to the invisible Others Out There. Not to mention that my husband LOVES it when I write because he feels it is my purpose. I refuse to justify myself to anyone anymore. The things i have been listening to and reading that have been so freeing for me have one major commonality: no one is justifying a damn thing. They just trust themselves to do as they believe is right and everything else falls away.
The thing is, I have put pressure on myself, too. I feel like if I am going to do this whole sharing my journey openly thing it has to be done a certain way. Cohesive. Professional. Readers and followers, be they my BFF or someone who randomly discovers my writing and wants to follow, should be given a clean, crisp user experience. This is why I had such a hard time letting my illness even be integrated into my whole self-care/wellness/beauty journey. It didn't fit the schema I had so carefully wrought over months last year. It was a major disruption to the life I thought I was embarking upon. So I just tried to stick to the plan and wait out the illness, assuming it would pass like a lingering Seattle Juneuary cloud cover.
But god, I cannot live that way. It led to a lot of silence. To not posting anything because I questioned if it was sincere. How could I post a face mask I like to my Insta when the six days previous the only personal hygiene I did was brush my teeth and put on deodorant (and only most of those days, TBQH)? But how could I talk about my chronic health struggles when Tami L. Hagglund was meant to be a place about beauty and self-care for normal people (as opposed to gurus)? So I compartmentalized. And it just didn't fucking work.
Now I'm just doing my whole self. I made my personal Insta private for the 87th time so it can protect the things I don't want to share with the whole world (mostly my kids and location information and such) and Tami L. Hagglund will be whatever the fuck I want to share. The people who resonate will follow and if I am faithful to me it will be right for someone. Everything else doesn't matter. I'm not trying to build an empire and brand that is a carefully crafted faux front that can make me a Z-list celebrity or wealthy. I have actually never made a single dime from anything I have ever written. Spent a lot on things to make my website one I like, and more than I care to even ballpark to try self-care and beauty things that might help others, not so I can make some big ROI but because I WANT to do those things. And if someone questions that? Thinks I just want attention and cash? A'ight. I ain't for them and they can carry on. Which, dammit, I wanted to do a whole post on that concept. Maybe I will still.
You know the funny thing? When I write like this, just leaning into me and saying the things I want to, the words that have bubbled about my psyche like a lava lamp but now are in legible form? My pain is...well, not forgotten. But pushed to the edges. It's there but the blaze in my chest started as damp smolders and then the sparks from the action of my fingers flying across a keyboard set it alight. Now it's so full of ebullient luminescence that the warmth in my veins works just as well as any opiate or other painkiller I have tried, taking my misery from an 8 to a 7. Odd how that works.
That isn't always an option. Sometimes I can't even sit up let alone write. In fact, at this moment my right hand is starting to quake and my ability to keep going is coming to a close.
But today I could write and so here I am, leaning in. To those who want to see and hear, hello. All else can fall away.