animal crossing & kimonos ftw

It is getting pretty deep into September and I am still a suburban hermit.  If I were you, I’d be wondering how I’m doing — Well — it is weird to say…  but all things considered… I had an okay summer! And it has been a good birthday month too!! — even without the normal packed calendar of adventures, concerts, happy-hours, brunches, toasts, garden parties, busy season, and piles of bestie selfies…  I’m genuinely okay.  And often, happy.

Let me be very clear:  This is a seriously miserable situation.  Being this unwell SUCKS.  And from what I’m told by all my doctors, I’m not alone.  They see person after person who is very very unwell, but there are no answers.  No identifiable root to attack.  No viable treatment plan.  Not even a true diagnosis or a trial option (yet).  The next step is to find a way to cope and wait to see if our systems will rebound.  Some do.  Some do not.  Some are getting worse.  Some are giving themselves bee stings to the spine in their desperate search for relief.

I don’t know how all of these other people are dealing with this because it is awful — and it has got to be impossibly hard for the average American.  I am not average; My basic needs are more than met:  I have quality health insurance; I feel heard by a team of excellent medical professionals who continue to give me so many labs, tests, scans, and treatments. I have a beautiful place to convalesce where I am safe and protected and cherished.  I’m at a stage of life where I can (and should) be making myself the priority; even my kids need very little from me.  Not to mention that as long as we live simply, I don’t need to work –and it came at a time of year when it was relatively easy for me to close my business. Being this unwell with a mystery is incredibly hard.  It is frustrating, painful, exhausting, disheartening, and not very hopeful– but truth be told, I’m personally not actually doing a ton of suffering because:

1) I live a charmed life (see above)

2) I’m naturally gifted at getting comfortable

3) There is a very specific KV sized loophole in this malady

Here is the deal, at this stage, I have very few options and I’m not quite ready for anything too crazy– nothing expensive or down dirt roads or treatments not approved by the CDC.  Therefore, I’ve decided to do what I do best:  Follow my instincts and try to be friends with whatever this thing is.  My mindset shift is to trust that as unlikely as it seems, maybe this illness has my best interests in mind.  Not something to fear or fight.  Something to join.  Not an enemy to vanquish, but instead to find peace and common ground and harmony — maybe it has special vision and sees something I cannot — and it worth it to me to give it a chance — to see if it can lead me to a very different but still fulfilling life.  My internal compass is a mess, so I’m letting it guide me entirely.  My only job right now is to be curious, listen carefully, and do absolutely nothing that causes the symptoms to flare.

It turns out that almost everything I used to love to do makes me feel like shit. My AD self feels like a completely different person.  It really can’t read or listen to a podcast or binge shows or even vacation.  AD KV can’t scroll social media or call my sister or reply to a text.  I can’t use a camera or walk any distance or garden or cook or craft or do a project or a puzzle or word games or plan or explore or even learn new information. No spreadsheets or lists or multi-tasking or adventuring or hosting!! Nope to Titos, wine, sugar, even most foods– any kind of chemical or mold or dust or allergens or stress. Next thing I know, I’m crippled with severe nerve pain, blinding migraines, endless vertigo, and a barrage of unsettling  and very concerning symptoms. My system is so wacked that I swear I’m starting to sense when Mercury is in retrograde. The only time when I’m consistently okay is in the recliner with ambient light and soothing music on volume 2.  sucks.

It didn’t take long in that recliner before my firechild determined that I needed a video game.  I am not a gamer.  The rest of the fam is, but I’ve just never been interested.  I have other hobbies that I love.  But since those other hobbies are a dud, I agreed to give it a try.  They setup a Switch with Animal Crossing on the big TV and put the most perfect controller into my hand.  It was brilliant.  In every way.  I could rest in my recliner and immerse myself into the world of my alter ego, Mama V.  This adorable little cartoon version of myself is fully healthy.  She plants flowers and designs an island and creates a cottage in a glowing moss pine forest.  There is nothing fast moving.  I can take breaks anytime.  I still listen to calming music.  Drago and Rex make me laugh. Winnie is my new bestie.  It gives me something to talk about with my gamer family — because — not trying to be a bitch, but none of the normal conversations work:  I don’t really want to be asked how I slept.  Or how I feel.  Or how my day is.  Or if I talked to anyone.  Or if I did anything or if I wanted to do anything. Or my pain level or if it was something specific or everything or if they could do something.  Or worse, attempting to respond to the news or venting or even comprehend anything complicated from the outside world.  A video game saved my sanity and my relationship with my caregivers — and became the most efficient path for me to cope.

In Animal Crossing, there are dailies—  Little things that the player wants to do daily because they make an island better. I started to dread waking up a little less because I have fruit to collect, stores to check, and fossils to donate to the museum. The days glide along effortlessly, especially because I also found some real life daily routines that help manage my symptoms and make the whole experience more comfortable. A slow stroll outside, epsom salt baths, concoctions of herbs and oils and teas– just things recommended for people this unwell.  Things that sometimes help a bit but rarely cause more harm.  I’m getting better at listening to my system, avoiding anything potentially toxic, and noticing the cues, but the window of comfort varies and is extremely small.  Mostly, the only consistent thing this new friend can tolerate is hundreds and hundreds of hours of Animal Crossing in the recliner. And honestly, it is a huge relief to have even one tiny bubble of reprieve. I love my Animal Crossing Island.  I’m proud that I’ve mastered a video game.  And it feels really good to have a worthy and loved distraction ready at any moment.

When my waterchild came home during breaks, they felt like a change of scenery and attire would be good for my soul. They were right.  They helped me gather an array of kimonos in a variety of textures to suit my mood: cozy robes and flowy linens that make me feel like I am Beth, convalescing on the seaside in Little Women. Or Colin in a Secret Garden.  Or at a healing ashram. Or a Queen in hiding at her Estate. Or my favorite, the Priestess of the Patio. We set-up a variety of comfy little stations so that it isn’t just a depressing rotation between the bed and recliner.  We’d gather under appreciated things from around the house to make the spaces functional and special — adjust lighting, add blankets, and arrange cherished items– whatever we needed to make each spot a little piece of paradise.  Sometimes I bring the Switch, but usually I just meditate and breathe in the those places. And then nearly without notice or fanfare, my body would want to move.  I’d slowly get up, stretch a little, and then tidy one little easy spot within my view.  I’d sit back down and my soul would feel SO GOOD!  It seriously feels like it used to when I’d complete a massive project!  But it is just one tiny ant sized contribution yet added so much peace and tranquility and happiness to my home and my soul.

Low and behold! Another little loophole was discovered as this new friend co-habitating my system sometimes likes to tidy the house and reorganize spaces too, like Animal Crossing my own home!!  It varies by the moment, but I enjoy folding laundry if someone brings up the bins. While grounding with toes in the grass, I like to water a few of the plants.  It feels good to slowly reorganize a drawer and sort a long forgotten box.  It is all laughably inefficient in comparison to BC KV, but it is manageable, a little productive, and makes me happy.  My home is like a quirky curated museum of my life; 47 years that have been packed with love and connection and adventure.  I like looking at all of the beautiful and functional items that have gathered through decades and generations:  thoughtful gifts, passed down treasures, handmade trinkets, thrifted finds, landfill rescues, escapade art…  When I wander around my house and my over-grown gardens, I don’t feel grief or pain or loss — I just feel at peace.  It is serene and lovely and manageable in this cocoon of my own making.  Sometimes memories do break a fall.

At this point, I am content. I can do this life for now. I’m treading water. It is very different and still hard, but it is fulfilling, delightful, and livable. That said, you should know that although I am managing much better –I’m rarely suffering– but the symptoms don’t actually seem to be improving a ton. I have good spots, where I can make a grocery list. Or watch an hour of a show. Or find my phone. Or think about a blog. But those are moments when I rally. There are lots of times (probably most) when I know my housemates are walking on eggshells. It is like living with a real live Psyduck over here. Every light and sound and smell and touch is distorted. I rarely melt-down anymore because I’m better at knowing my limits and my surroundings are catered exactly to my specifications; but when any size wave arrives, I feel severe and unrelenting physical pain that reminds me that I am not getting better. I am not ready for more. At this point, it doesn’t feel hopeful to have my old life as a goal. It feels over-whelming and frankly impossible. My system is so different. Truth be told– I’m at my current goal. If I was told in January –when my covid was really hard, that by birthday month, I would get to live and even be happy –but with conditions:  My home would be my prison; It will always be perfectly stocked with everything I could ever want or need. Even my immediate family can come and go at will. But my own communication with the outside world would cease and I would have crippling pain whenever I tried —  I would have been relieved with this Circe style banishment — and my dear friends and family would almost believe this “curse” was a little too suspiciously convenient and well suited — and quietly wonder if my homebody of a life-mate got some hand in making this deal.

This mystery illness is a literal hell loop for so many people. But for me, this is okay. This is manageable. This route may not be viable for anyone else on earth, but the best thing for me is to be okay with how life is right at this moment and not wish for more or different. Because this is fine too. It is okay if I am only okay inside a very small and specific self-made cocoon.  At least I am okay somewhere.  That is more than most people who have this.  I will be streaming tears of happiness if I can see live music again or adventure the globe or use a real camera or hug piles of people. But the truth is that I recognize that I’ve been gifted a charmed life. I am lucky that I have decades of experience getting comfortable. And I’m beyond grateful that I am able to avoid some of the actual suffering because of a perfect KV sized loophole in all this madness. At least I get to have this beautiful option — to live a modified but never-the-less happy life — filled with kimonos and Animal Crossing in the comfort of my delightfully curated home.

I love you guys and the outside world! I’ve not given up… But also… I don’t have a ton of options right now and I’m really relieved to have found a way to cope while I’m indefinitely waiting. I have zero FOMO –please proceed to have group chats without me– and parties and celebrations and selfies! I’m not well enough to miss being a part of things. I don’t even know what day it is. But MOSTLY!!! — Go on without me!!! Make the memories and post the pictures and enjoy this beautiful world! I really really really do hope that you are out there living your best life!! In the sunshine and stars and noise and excitement!!!