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February 2020
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Day Before the Wedding

“Do you need any help?” They all ask, eager to be of assistance.
I answer them honestly “No.”
The wedding is tomorrow, and I feel some anxiety about how all the events will unfold, but it is the normal amount of anxiety that I feel before any social event. I have no feeling of doom. As long as the ceremony takes place, then all the rest can turn into a rolling disaster and I would just roll with it. And laugh. I’ve had a lot of practice laughing at unexpected disasters in the past eight months.

I don’t have a long list of last minute things for friends and relations to help with. That is by design. Months ago I decided to pay professionals to take care of the major pieces of the celebration specifically so I would not have to scramble and do things myself. My major task for today is to spend the day quietly. Me and mine need to introvert today because tomorrow will be full of social.

I don’t know if the lack of last-minute tasks is the result of my decades-long experience with event planning. After running a Gen Con booth and booths at Comic Cons, hiring some vendors to help me throw a party is pretty simple. It could also be the result of ditching some of the usual traditions. We’re skipping rehearsal dinners, speeches, bridesmaids/groomsmen matching attire, requiring anyone to wear a specific color, flowers, and probably a half dozen other things that are traditional. Instead we’re telling people to wear what makes them happy, making sure the music is friendly to sound sensitive people, using a side room for a board game/ puzzle area, providing food, and telling everyone that they’re allowed to opt in or out of any portion of the celebration that they want. My house is full of neuroatypicality, so the celebration is designed to be as flexible as possible for individuals. I think it is going to be a fun celebration.

The other question people ask me is how I’m feeling. There is this set of emotions that people expect a mother of a daughter getting married to have. Maybe I will have them, but my emotions tend to be out of sync with events. I either feel things far in advance or the emotions show up later. I felt a lot of things about my daughter and her wedding in early December. Right now I feel calm and happy, because she is happy. I can see the ways that her new life suits her well and I can finally trust that anxiety won’t make her Nope out of the whole thing. As for how I’ll feel tomorrow, I’ve no idea. Odds are good that I won’t know how I felt until I have time to sit down and sort afterward.

For now, I’ve got a few items of clothing to steam iron then we’re good to go.

On the Eve of Wedding Week.

It took me almost two weeks longer than I wanted, but I found words to help me shape how I want 2020 to be. I wrote them in my first Newsletter for 2020:

Thus I return to the idea of creating a portion of joy and peace that I can carry with me no matter what surrounds me. I’ve tried visualizing it like a bubble, but bubbles feel fragile and of necessity keep everything at a slight distance. Instead I envision a cloak of joy and peace that I can wear across my shoulders and back while my hands do necessary work. A cloak I can wrap around myself and vanish into on days when everything feels like too much. Inside this cloak I need a pocket to collect the words of friends who value me and the words of those who inspire me to be better. Words that shine when the pocket is opened. At times I can pull out these shining words and release them in a cloud around me to be a shield of fireflies to protect me and light my way when things feel dark. So this year I guess instead of having an intention, I have an image to carry me through the months to come.

(You can read the full Newsletter here.)

I’m glad a focal point showed up. This coming week will be full of things. Wedding events begin tomorrow with relatives arriving in town for a bridal shower. Then there are the last pieces of preparation for Wednesday. We’ve almost reached the point where things are either done or they aren’t. It is a relief to getting to this point, because now instead of planning and preparing, I can just roll with whatever comes. I don’t know what feelings are ahead of me for the remainder of this week, but I have a cloak I’m going to wear through it all.

Quiet

Tonight I feel quiet. I’m aware that outside my house, in national and international news, there are events that have many people stressed and upset. Yet I am focused on the inside of my house and the inside of my body as both recover from mild traumas. Most people pay no attentions to the sensations of swallowing, I’ve had to for a couple of years. Since Friday’s procedure the sensations have all changed and I don’t know yet which changes are part of the healing process and which are my new normal. I haven’t choked on food since Friday, so that is something.

In a similar way, I’m putting my house and family rhythms back together after all the upheaval of 2019. School starts again tomorrow, which would usually be the moment when a new year settles in and establishes itself. But the one kid I have who is still in school is currently sporting a temperature of 102. He’s going to spend another day or two on the couch recovering from flu. And our path to normal life patterns is still on hold. I don’t think we’ll get anything resembling normal until after my daughter’s wedding in ten days. For me 2020 doesn’t begin until after the wedding is complete.

This next week is littered with small preparation tasks for the wedding. I have jackets to alter, a haircut to schedule, a kid in need of hair dye, printed materials to order, catering to finalize, some airport pick ups, and I should probably pick out what I’m going to wear. Yet none of these tasks are mission critical. I could fail at all of them and the wedding will still go forward. I just hope no one else catches the flu. (We’ve kept the bride and groom quarantined away from the sick kid.)

Medical Results

I’ve been home from my scoping procedure for four hours now. I’m not loopy but I’m forbidden from driving for twelve hours, and I can feel enough grogginess to understand why.
Good news, we have a firm diagnosis and it is a familiar problem to my GI doctor with a range of standard treatments. EOSINOPHILIC ESOPHAGITIS (EOE) Most human throats are 20mm wide and flexible. the base of mine next to the stomach was 8mm wide and stiff. (For reference, 8mm is the size of a drinking straw.) They stretched out the constriction to 12mm which was as far as the doctor felt comfortable without risking a perforation. Now I get to heal up for a few weeks and see what that does for me. It is possible that this will solve my issues. It is also possible that I’ll need additional dilation. Some people with this condition have dilation once per year. Others once every five years or so. Others only once ever.

For right now I’m home, on my couch. My throat is sore, my voice is hoarse, and I’ve got people to take care of me. Everything else can wait a day or two.

Medical Update

At the onset of a new year, I’d like to have a philosophical post about my intentions for the coming year. Instead I’m sitting between an ER visit yesterday and a medical procedure tomorrow, knowing that Howard and I are likely to tweet about our experiences and friends will want to know what is going on. So here is what is going on, advanced warning GI discussion and vomit. Philosophical musings about even writing this post follow after the update.

Twenty five years ago I had a non-cancerous tumor in my throat which required two surgeries and six weeks of radiation therapy to kill. It also left me with a party trick where I tip my head back in a way that makes people notice the scars while joking that a man (the doctor) slit my throat and took all my money.

Two years ago I was diagnosed with “Dismotility of the Swallow Mechanism” after two swallowing studies where I got to eat barium in front of an X Ray machine. In case you were wondering, barium is not tasty and doing a test where I attempt to demonstrate how I choke on food was not fun. After diagnosis I was sent to a physical therapist and told to take small bites, chew thoroughly, and eat slowly. I figured that it was just one of the long-term consequences of surgery and radiation exposure.

Sometime in the last year I went from sometimes having trouble swallowing food to having food clog up in my throat in ways that took me up to an hour to clear. And I usually had to clear things by bringing them back up. Fortunately since the food never actually reached my stomach, it didn’t contain stomach acid which is what makes vomit so unpleasant to taste or smell. Unfortunately I could not predict what would clog or when. It got subtly and progressively worse until I started making jokes about my magical ability to choke on water. I was starting to think I needed to go talk to a doctor again because things were worse (clogs about 3 times per week), but then we had a summer full of house disaster and repair where I became a general contractor, A fall with further house upheaval, a daughter getting married, and a pile of additional debt that made me reluctant to spend more on doctors. I managed to get an upgraded insurance plan for 2020 which would make seeing a specialist less expensive. I planned on addressing the issue once the wedding was done.

Two nights ago, on New Years Eve, I ate some food and my throat clogged. I performed all my usual throat clearing steps, food came back up, but the clog did not clear. After three hours, Howard did some googling and found out more information about esophageal dysfunction in five minutes than I’d been told by the doctor two years before. The information made us more determined to see a doctor ASAP because there are better treatments available than “eat carefully.” It also helped us be comfortable waiting until morning to see if the clog cleared. It didn’t. At that point it was New Year’s Day, no doctors were in their offices, but I’d been 15 hours without food or water. I was already starting to feel the effects of dehydration and waiting an additional 24 hours didn’t seem wise. Also, according to the Instacare I visited first, the equipment necessary to help me was only available in hospitals anyway, and an ER was the only way to access that equipment urgently. It was so strange to be sitting there feeling healthy and hungry, but to know that without medical intervention I could be dead in 3-5 days. We went to the ER.

At the ER I described my trouble and they instantly knew what to do. It was a familiar problem to them, one they could solve. Within an hour, using IV meds, the clog was cleared and I could eat again. I was sent home with a referral to a gastroenterologist to send a scope down my throat to fully diagnose and treat the cause of the problems. (The doctor I’d been to before was an ENT. I should have been sent to a gastroenterologist.) I’m scheduled to be scoped tomorrow. I’m certain that Howard or I will tweet about it because medical stuff is fascinating to our writer brains. Also because one of our defense mechanisms when we are stressed or scared is to make jokes. Laughter is medicine. (Not the best medicine, mind you. No amount of laughing can fix my throat, which is why I’m going to have a medical professional stick a scope down my esophagus.)

So that is my medical history. I have mixed feelings about posting it. On one hand, it is fascinating information for writer people who may be able to use details for stories they want to write. On the other hand, medical information is exceedingly personal and often kept private. The gripping hand is that the nature of my job and my friendships is that there are a lot of people out there who honestly care about me, and who I care about, that I only communicate with via the internet. The tweets that Howard and I made from the ER yesterday brought in many concerned and well-wishing responses. So I find myself making a public post about medical conditions where strangers could come along and offer criticism of my life choices. But also where my truly loving friends can come read about what is happening in my life and hopefully be a little less worried.

It is all going to be okay, in fact at the end of this particular emotional (and financial) ride I’m likely to have better quality of life where I don’t have to carry vomit bags with me any time I choose to eat more than five feet away from a sink. There is an entire post I should probably write sometime about coming to terms with an invisible disability. But not today. For today I’m doing urgent tasks, only eating liquid food, and trying not to let my anxiety make up too many stories about my procedure tomorrow.

Wanting to Pause in Between

On the last day of 2019 I find myself longing for a between space. I don’t want to cling to the year just past. It was too full of upheaval and stress for me to want to linger. Yet I’m not ready to launch myself into a new year yet. After tomorrow the holiday pause ends and the world will speed up again. I’ll need to find my work brain so I can pick up business tasks. I have Kickstarter obligations to fulfill. I need to remember how to be a writer, creative, and business person. What I would like to be able to do is let all of that lie fallow until my daughter’s wedding in two weeks. Just extend the holiday pause so I can do these family things while untroubled by all the rest.

I can feel that “all the rest” beginning to move and chew at the doors I’ve hidden it all behind in my brain. I would love to be in a place where I could throw those doors open, joyfully ready to tackle new projects. I’m trying to get there. One of the things I’ve been working on the past week has been the family photo book for 2019. Through placing pictures and words onto pages, I’m reviewing the year I just had and re-processing the experiences of it. It was a year where the financial and stress blows just kept on coming at a pace where we could barely keep up. We reached the point where we just laughed when yet another thing showed up in our lives.

This year ends with us five figures deeper in debt than we were last year. It also ends with important relationships built and lots of personal growth for everyone. We gained a family member (officially linked in two weeks.) Turned our house upside down by suddenly renovating half of it because of disaster clean up. Put two kids into college. Withdrew two kids from college. Paid a lot of therapy bills. And had creative projects significantly slowed down by all the uproar. And yet I treasure every bit of this year because the best bits -the bright, glowing, shining moments- were purchased with the crazy, stressful, upside-down bits.

I don’t feel like I have had enough time to really examine the impacts and gains from the past year. I don’t feel ready to launch into the year that is about to begin. But ready or not, time marches me forward into 2020

The End of a Difficult Year

We are eleven days from the end of the year and the turn over into a new decade. Tonight is solstice, the point where night is darkest and longest. After today every day will be a little bit longer and dawn will come a little bit earlier. Halfway out of the dark.

I’m seeing quite a lot of social media posts from people who are very ready to say goodbye to 2019. They had hard years for one reason or another. My year was high stakes, high stress, high anxiety, and very complicated, yet I’m not angry at 2019. The hard stuff that happened this year made the best stuff from the year possible. I have a new appreciation for the fact that it is difficulties which make us grow rather than comfort or ease. Since many of my people have been in desperate need of growth, I would feel ungrateful to complain about the very things which triggered the beginnings of that growth.

This year had a bunch of hard things in it. I’ll spend portions of next year dealing with ongoing consequences of those hard things (Hello debt hole which still needs to be filled in.) But I would not wish away the year I had. I gained too many precious things as a result.

Motivation

“How do you get yourself motivated?” My 17 year old son asked me on the way home from therapy. I could tell it was a question his therapist suggested he ask me, and probably several other adults in his life. It is a good question for this young man to be asking because he struggles with self motivation.

I didn’t have a ready answer for him. Instead I had to pause and think about why (and how) I get myself moving, particularly on the days that I don’t want to. Some of it is a desire to be there for the people who depend on me. I’ve got 24 years of practice at having dependent people who will suffer consequences if I don’t do the basic household things. Yet now my dependents aren’t really dependent any more. I no longer have to carefully manage my days so that naptime falls into the convenient window of time, but the skill of being able to do that has shaped all the years since then.

As I talked I realized that most of my ability to motivate has nothing to do with other people at all. Instead it is about who I want to be and how I want to live. I’ll do dishes before bed, even though I’m tired because I want to have a better start for the morning than waking up to a kitchen disaster. I do the work things because I want to live in a world where I’ve completed the project in front of me and they only way I get to do that is if I work on the project today. This source of motivation depends on me having a longer viewpoint than how I feel in the moment. Developing the ability to see that viewpoint requires practice. Developing the ability to still reach for a future I want despite a haze of depression or fatigue is an additional level of skill.

That is about as far as the conversation got before we arrived at home. It was enough for now. He needs a chance for the new ideas to settle. Then he needs the chance to practice self-motivation, fail at self-motivation, and try again. This kid has so much potential if he can use the next six months developing his self-management skills, then there will be no stopping him.

Holiday Quiet

There is a quietness that comes with the holidays. It seems strange to say that when so many people are running around and stressed. But the running-around-stressed part is the preparations. It is the part where things must be planned, organized, purchased, set up. After all of that, when the holiday truly arrives, then I feel quiet in my heart. Quiet and peace and gratitude. Once I find the quiet of a holiday it no longer matters what did or did not get done. Once I’m inside the quiet all the things which felt so vital just… fade away.

This morning I had a list of tasks and a feeling of stress. This evening, I’ve entered Thanksgiving. We won’t be having our feast until Friday, so tomorrow I will have cooking projects. And Christmas music. And possibly a Christmas tree. Most years we wait until after Thanksgiving to put up the Christmas decorations. This year I needed to invoke Christmas a bit early. The first decorations went up yesterday. Invocation successful, my first period of holiday quiet arrived this evening.

I won’t be able to dwell in it for an entire month. I will still have many tasks to accomplish for Christmas, and the Kickstarter, and the wedding, and family, and basic household maintenance. Yet even when I’m feeling brain fry in full force, I will also have a little slice of quiet. Like background music in an elevator or waiting room. Completely unnoticed most of the time, but waiting for me any time there is a space between all the other things. I’m so glad to have some quiet after a particularly noisy year.

Annual Season of Holiday Brain Fry

The holiday brain fry is beginning early this year. I can tell because I’m already pulling back from reading news and social media. I didn’t consciously decide to do so, I just don’t have the mental bandwidth to absorb any additional information. This earlier-than-usual retreat is most certainly triggered by the overload of things from the summer combined with a month-long Kickstarter push that just concluded also combined with the seemingly-endless list of wedding preparation tasks. (The bride and Groom had their first “maybe we should just elope” moment over the weekend.) Oh, and holiday season begins this week, so I need to start thinking about gift giving while also making time to ship out packages every day instead of twice per week.

Yet tasks are getting completed. I just need to shut out extra noise and focus on the day in front of me.