My Silent Disease

 

We have a family tradition. Cold Face is what my father calls it, but the textbook word is stoicism: "the endurance of pain or hardship without the display of feelings and without complaint" (Google). Menstrual periods have hurt my entire life. I passed out in high-school Trigonometry once. A foreign exchange student asked if I was okay when I woke up. Apparently, passing out in Trig is normal to Americans, and I assumed extremely painful periods were normal too. Until about two years ago. Suddenly the pain was all of the time, every day. I went to the OB/ GYN, who fortunately believed me because I have a strong family history of endometriosis. Endometriosis occurs when endometrial-like tissue (similar to the tissue that lines the uterus) is found growing outside the uterus, typically in the pelvic cavity and around the outside of the uterus and ovaries but sometimes around bowels, bladder, kidneys, etc. Unfortunately, my MRI showed nothing. Being the stoic that I am, I assumed that meant I was probably just being a baby about some musculoskeletal pain or something (I did catch fast-pitch softball for over a decade and I have jumped out of a helicopter into the ocean without a parachute...so body pain complaints should be expected?). 

The doctors wanted me to describe my pain on the classic ten-point pain scale (the one with frowny faces). I have never understood the 10-point pain scale. It has no real descriptive anchors. How the hell am I supposed to know if this sword stabbing in and out of my belly for 6 months is a 10? Was it the worst pain in my life? I don't know. Periods were normally a 10 as far as I knew. I've broken my nose twice, but I slept both through the following nights both times. I rarely managed to sleep through the night without medicine once a month anyway thanks to periods for like 30 years. I didn't sleep entire nights for months with this new level of pain, it hurt too much, even though I was utterly exhausted. Still, maybe a 10 is being mauled alive by a bear? This wasn't that bad...but then again, maybe I'm too stoic and introverted to be a reliable witness to my own pain?

I got lucky though, and the surgeon signed me up for a laparoscopic hysterectomy despite my poor ability to articulate my pain levels. Stage IV (out of IV) endometriosis everywhere. One thing you never want to hear your surgeon say? "I had to dissect your rectum...and your bladder." 

The surgery was more traumatic than expected and with that much tissue removal, it was probably inevitable that I developed a post-surgical abscess and infection. Fortunately, I live with an ICU physician, so I did not tough that one out until I became septic...still it tried to kill me. I required five days of IV antibiotics and another surgery to drain the abscess. More risk to my life, more time away from being able to do anything but wait in a hospital bed in pain. Don't ask, I don't know if it was a 10 on the pain scale, but it was definitely a 100 on the pain-in-the-ass scale. I couldn't do anything to help anyone, even myself.

What's my point? (And I do have one...) One in ten women suffers in silence for 7 to 10 years before being diagnosed and treated (https://www.usnews.com/news/health-news/articles/2021-03-18/stop-gaslighting-women-about-endometriosis). I was one of them. While endometriosis itself isn't typically fatal, deeply infiltrating endometriosis leads to serious dysfunction of the organs of the pelvis (bladder, colon, rectum, etc.) as well as obliteration of normal anatomical spaces that can cause "frozen pelvis" (imagine being paralyzed in the hips). The complications (e.g. sepsis) can cause death, and even if they don't, who wants to live bed-ridden with a feeding tube and a drain tube for the rest of their life? I think there are probably many more women toughing it out. Maybe to the brink of disaster. Mothers, executives, public servants, healthcare professionals, etc. all of who have bigger reasons to take care of others first and foremost while they tough it out until it becomes brutally obvious. This is a plea to them, and maybe others who are too stoic for their own good. Don't be too tough, too resilient. You can't help anyone if you don't take good enough care of yourself first. Even if you're not a woman, you probably know a woman who is one of the every ten with this silent disease. I think we can do more to help each other articulate our pain, and listen to each other articulate that pain so that it can be diagnosed and treated. Some pain takes years to describe right. Some diseases take ten or even twenty years to name.

The Don't Fall Apart Workout

My stress is high, my motivation is low, and my chances of a panic attack or serious ergonomic injury and developing a serious spare tire are high if I do nothing. So in the interest of doing something, here is what I am giving a go this month, a workout that any writer (or office worker) for that matter can easily manage to fit in. Many of these brief exercises were suggested by Antartic Winter-Over Expeditioners that I know (they can't go outside and live and work in a confined environment for a year). I hope lots of folks will try it with me, as psychologically, I know other's giving me crap about if I did it today helps me stay social connected (and I mean that in the sweetest tone of supportive sarcasm possible). Seriously though, the research is overwhelmingly convincing. Even pushing ourselves to do a little exercise in very small bursts by our desks boosts our physical and mental fitness in times of extreme stress...like say a Pandemic. It doesn't have to be epic. It just has to be. Done.

Nine times a day, I will take one to five minutes an hour to do these simple things (you heard me say it so you can pester me to it or join in and tell me how much more awesome you are at each): 

A little more detail follows below for anyone who needs or wants it.

1. 9AM: Yoga Sun Salutation (one iteration takes about 3 minutes). I like the one demonstrated in the first three minutes of this video: 

https://youtu.be/DVH-l9lAaTI

2. 10 AM: 10 Jumping Jacks 

3. 11AM: 10 Push Ups

4. 12PM: 5 Flights of Stairs or 50 leg raises (25 each side). Standing is usually easiest in an office and helps your tailbone too. This cute Aussie shows you how to do so well in this one minute video.

https://youtu.be/B7Q7gFrqp5w

5. 1PM: Walk around one city block or 500 steps (indoors)

6. 2PM: Dance to 1 song of choice. I am a fan of this Bollywood Basic Steps video as it can be done right in front of your desk if necessary and doesn't take a good dancer to enjoy it. 

https://youtu.be/UWawJcxYY6I

7. 3PM: 10 Squats. I use my right hip anatomy, so I suggest you do too if you want to try this one. Squat University can help you figure that out in this short video.

8. 4PM: 10 in place or reverse Lunges. Again, it pays to do these safely and this video has a great quick explanation of how to learn that.

9. 5PM Five minutes of Tai Chi. I like this easy sequence of Tai Chi: 

https://youtu.be/cEOS2zoyQw4 

A Saveable/ Printable Summary 

Peak of the Plague Playlist

In uncertain order of their ability to help you coaster over the peak with sanity intact here are 12 perky song/ music video nominations from a crazy writer you obviously bother to follow...

WARNING: from multiple genres

Doctor Doctor Help Me Please (but maybe not at the disco just right now) 

Tidal (because Imogene is a musical genius and also "Do it for love, Do it for us, Just do it for goodness sake" and wear the damn mask already, unless you're alone, then, "do it just how you like") 

Bootleg Turn (because we're all in need of a drink with a boogie beat) 

Hard Candy Christmas (if Dolly can't help then you're already dead...besides it is "The Best Little Whorehouse in Texas") 

If We Make It Through December (this may be the new national anthem? At any rate, it's fun to sing along in bad accents on Zoom with family you haven't seen in too long) 

St. James Infirmary Blues (because the White Stripes version comes with cartoons!) 

I Don't Care Anymore (deep words of wisdom from the Houston Kid) 

Survivin' (crawling out these sheets to see another day) 

Put Your Head Down (it might keep you alive and AJ and friends in harmony will make you feel fine) 

Add It Up (we know why we can't just one kiss...same song but a whole new conspiracy) 

The Hearse is Backed Up to the Door (take some fun with your comfort)

Hearse (let's just keep the wolves at the door as Ani leaves us with this "dopey love song." Hold someone close because if you can and let it be enough) 

That's twelve days of what I'm listening to...

The Imperative

Flick the brains and dust off your boots and focus your senses on the forest again, the noises in the distance, like the birds singing again. If the birds are singing again, then you are safe to stay in shock for another minute or so. Still, it would be best to get some feeling back in your face and hands. Don’t look at the bodies. You are alive and still standing. Slap your cheeks. Shuffle your feet. Don’t pant. Slow your breath to four seconds of inhaling, holding onto it for four seconds, then let it out for four seconds. You don’t have to succeed one hundred percent every four seconds. Just try. Notice that the sky is still blue. Smell the pine and dirt and blood and cold. Feel how dirty and gritty your hands are from hiding on the ground. Listen to your hungry stomach growl. Hunger is good. It means you are alive. Don’t look down. Look east through the trees. Do you hear gunfire and engines to the east, or only the north and west? If the east sounds silent walk that way. Don’t look down. You are not bleeding. You cannot stop your sister’s bleeding. She is dead. You remember. Walk east through the trees. There is nothing you can do to disguise your genetic heritage. The wrong people will recognize you by sight anyway but stop a second still and swipe up some of that goopy mud. Smear it on your yellow star. Camouflage it. They can’t yell at you for ripping it off that way, but the flash of yellow won’t give you away in the bushes. Walk on. Keep going east. There is a river bed that way, you vaguely remember from that walk with Papa last year, before Jews were shot in the head on the street or put in trains to never return. You know there was a cave. There will not be food, but you will have all the water you can drink and you need to drink. You are still alive. Do not look at your boots. You can wash them in the river later. Look at the ground directly in front of you. Glance up, to the right, to the left. Make sure no one is near. Look for signs of the river and the cave. You were so scared of that cave last year and it’s great dank maw above the burbling water slapping rocks. Anything could be hidden in its thick carpet of decaying twigs and leaves. You could be hidden. You know the cave is an imperative security blanket now. 

Stop!

You’ve stepped on a twig. There is shuffling nearby. Loud. Bigger than a squirrel. Is it to your left? Can you outrun it? Probably not. Climb that tree, the pine with too many limbs. You are small enough to be hidden in it even if you can’t get more than halfway to the top. Yes, the limbs are sticky with sap and wet. Keep going. Quietly. The shuffling is close now. Definitely human. Make your breathing silent, lower than a mouse’s, just as Papa showed you before he put your hand in your sister’s and told you to go hide under the woodpile. In and out, breathe under your hand with your fingers spread so that the puff of air looks no different from the steam of the tree’s great bushy needles tickling all around you. Watch below. There you see, shuffling into sight, a woman with a muddy yellow star. Make a decision, can you afford to ask her for help or offer her your help to find the cave? What is survival worth? It is a difficult question. You are only ten years old, but there is no more time to grow up first. How do you survive? In company or alone? You decide.

Cup

A cup of Ire. A cup of Mirth. Half a cup of each for most. Cupping the crown of a baby’s head or the round of a lover’s breast. Cupping all you still possess in your arms after a fire. Cupping the last of your warmth in your hands and blowing on them in hope of more.

You can borrow a cup or a cup of sugar. There is precedent. There is a rumor the Holy Grail is a wooden cup. Valhalla welcomes all with an endless cup. No need to borrow again, as all heroes share with abandon and glee. When someone is drunk, we still say they are lost in their cups. Sometimes I feel lost in my cups without drinking a drop though. Thoughts are nectar that can be both toxic and intoxicating. If time really is a river, then I suspect we should measure it in cups.

Some pups fit in a cup. Teakettle ChuaChuas, Toy Poodles. All kittens fit in a cup. Rats fit five to a cup, but rarely come bearing a cup. Biergarten servers come bearing many cups, with the goal of making everyone lost in their cups enough to sing. Even if you don’t speak the language. Stille Nacht. Alles Schlaft. Except on the Night of Broken Glass. So fragile the peace that humanity tried to pour into that cup of time. Kristallnacht. Brittle even. A shattered cup that cannot be repaired. But glass can be recycled. It has to be crushed, purified and cleaned of contaminates first. It becomes cullet that must be remelted and cast. Completely new shapes of cups can result. The cup acquires a new nature and life by being ground into dust and reformed, but using this dust requires less energy/ heat than forging a glass cup from scratch would. This makes recycling glass cups economical. What about human cups? Does it take less energy to grind out souls to the essence and recast? Sometimes it takes less energy to grind my beliefs to dust and recast. How many cups of time do I have left after all? The limit is unspecified. Glass cups can be recycled endlessly, and they are brittle. Are we any less resilient than glass?

What is at the bottom of our cup of time and soul? Are there tea leaves we can read to forecast the future of time without us now?

If you take away the C you’re left with up, but you can only fill a cup up not pour it up. Not even in space without gravity will a cup pour up, but it can still be filled up. In space, your cup will not runneth over. Molecules stick together in a bubble that just expands beyond your cup...all you can do is shatter the bubble into smaller bubbles and push them out of the cup. These bubbles endlessly exist until someone vacuums them up, or consumes them...cups them again. I start most days with a cup of coffee or tea. Sometimes I have a “good cuppa” with a friend. Is love consuming a cup together? Or pouring a cup for? Or refilling an empty cup? Or smashing a cup together to celebrate your vows? Is love one or all of the cups we can measure in the river of time?

I have a cupful of questions.