Giving Voice

Let me start by saying that I am unequivocally not insane. Well, mostly not insane.

See, taking a few courses online in the fall got me woke, and, in the recent absence of an academic goal I’ve been listening to podcasted lectures and language lessons. I had dropped off Thing2, putting his soundtrack of choice out of my misery so I could listening to the teacher from the German immersion course talk about the weather as I drove to my favorite Wednesday diner for breakfast (yes, I have a different diner for different days of the week).

I was listening to the course mainly to hear a normal pace rather than to learn weather terms again and missed a few repetitions. Then,a sentence about the temperature climbing to 18 degrees Celsius for the third time, a voice in my head that sounded a bit like a recently departed and dearly beloved uncle reminded me (in German) that it was Celsius, not Fahrenheit.

Suddenly another, decidedly British voice mentioned how one of the still quaint but somehow multimillion dollar houses along the country road near Manchester looked suspiciously empty and wouldn’t it be nice to have a normal house. Still another voice with an old-timey Vermont accent answered that there couldn’t possibly be any abandoned (affordable) houses in this neck of the woods, and suddenly I’d missed the first two repetitions of the next sentence on snow.

My working theory is that the voices in my head are an occupational hazard of working alone. One of the voices has mentioned that it’s more of a quirk than a hazard. They may even be advantageous, especially since they come up with tons of great ideas for books and paintings (the bad ideas – like buying the smaller dress size to get motivated to lose the weight — I get to keep the credit for).

At some point, I do need to call a meeting of the minds — someplace nice and outside — and ask if we could please, pretty please bring up our suggestions one at a time because some days the flood of ideas is just noise.

Keeping the Creative Faith

Last Wednesday was the first day off in months that didn’t include chauffeur duty to a medical facility for Thing1 or Thing2. Both kids miraculously got off to school on time, and I decided to have real day off.

I kicked off the morning with some cleaning (I know, I’m definitely not right in the head) and an oil change, using the time in the waiting area to write. Then off to the grocery store, using the drive time to listen to a Udemy course for help desk managers before heading to my favorite cafe in Cambridge for a bite and another few moments of writing.

It was the most creative morning I’d had in months.

Once upon a time, creative time was carefully guarded in iron-clad morning or evening hours when the rest of the house was asleep. For the last few months, though, it has been dead last on my list .

The mayhem hasn’t really ceased with spring, but I think we’re getting better at managing it. I know most weeks, at least one of my days off (which fall in the middle of the work week for most people) will involve a drive to one medical facility or another and have started to plan for it. And, just as I’ve trained myself to stop and smell the fart jokes (rose, I mean roses) when they appear, I’m slowly training myself to grab moments of creativity and study whenever they pop up.

Daily patterns change, and our focuses adapt to new challenges. Eventually, the adapting offers the tools to help keep the creative faith. For me, that’s important because where there’s creativity there is growth. There is life, and where there’s life there’s hope.

Not Depressed

The Big Guy has been fasting after lunch each day, so I text him early in the day to see if he wanted to break his fast to go to hibachi for dinner to celebrate two kids with honor roll and a full week of no hospital visits. He texted back ‘Zes’, in the mangled affirmative that had emerged with Thing1’s first words 16 years ago.

It was my last day off during the kids’ spring break (the term Spring is used very loosely in Vermont to describe a mythical concept based on the absence of snow). While the Big Guy got done with work, I played Monopoly with Thing2 so Thing1 could drive himself for the first time since his anemia was diagnosed and treated over a week ago to see SuperGal.

The morning felt normal, but normal doesn’t mean permanent.

I was still recovering from a bad property trade with Thing2 when Thing1 got home. He was pale and weak and complaining of pain that had all the hallmarks of a resurgent flare up. The Big Guy had arrived, and we debated staying home, but Thing1 insisted we carry on with our dinner plans.

“I have to eat,” he said. It was true, but his earlier excitement for a meal of celebration had devolved into determination to not surrender a favorite meal to his condition. The Big Guy and I voiced our concerns about his endurance, but he answered, “I just don’t care anymore.”

I have no doubt that’s true on a lot of recent days, and when he’s too tired to care, we know it’s our job to account for the deficit to get him through. As we packed everyone into the car and headed to the restaurant, however, in the rear-view mirror I could see his eyes close as he rested his head against the top of the door frame.

A worried crease appeared between his eyebrows, and I knew I was seeing a kid that is losing hope. I’ve seen that expression before. Usually I promise him we’ll keep searching until we find the right drug, but last night, as we drove, all I could do is promise him a delicious meal where we would all have fun.

We did have fun, and, for two hours it was a good drug.

When we got home, Thing1 had enough energy to crawl into bed. I went to the bottom of the stairs to his room several times during the night to make sure his breathing was normal, wishing I could give him my healthy organ.

It’s 6am as I write this, and we’ll head down to the hospital shortly for blood draws and more phone calls.

A lot of days I look for the silver lining. Thing1 has grown wise beyond his years. We have all gained empathy for people with long-term illnesses and appreciation for the privilege we enjoy in being able to seek out treatment option. This morning, however, I am focused on the lessons.

I’ve written a number of times about my own issues with mental illness and about the depression that invades life independent of any events, but what I’m feeling — what Thing1 has expressed he is feeling — is not that. There is an ongoing event.

This is not depression. This is understanding the new normal and its impact now and on the future. This is sadness. Last night, even when we were celebrating, it was grief.

There have been many times over the years when the only things keeping me from literally throwing away my life were Thing1 and Thing2. You can convince yourself that the adults in your life would survive and even thrive if you died, but no one can honestly tell themselves that a child would be better off with the knowledge that a mother willingly abandoned them.

So I’ve picked my battles with life, even when I didn’t really want to, and, even when life was awash with depression, it was worth it.

As I’m learning to understand the gulf between sadness and depression, I’m also learning that even if Thing1’s battle has to be fought indefinitely, I will fight it for him for as long he needs us to because he gives my life meaning.

So much is written about happiness these days. There are the happiest countries and the best paths to happiness. Life doesn’t have to be filled with happiness all the time to be worthwhile, however. As I’m slowly learning, filling it with meaning may be more sustaining in the long term.

Touch The Floor

It’s the day after tax day, and we have no power, except for the juice in the batteries that we have dedicated to the fridge and the well pump (we got grid-tied about a year ago).

The wind is in full drama mode, bending the trees to the ground in supplication. I’m sitting by the window wishing I had a journal – paper journal – that accommodated writing and illustration before deciding to make my own and realizing large windows framing Total Drama from the Earth Mama outside is a great show that doesn’t include a cable bill.

Authentically Unconflicted

I started this blog about 6 years ago as an assignment for a writing workshop. It started as a way to share writing and drawings and evolved into a search for an authentic life that still continues.

I spend the majority of my time working at home. Most days, the only people I see are the Big Guy and 17-year-old Thing1 and 11-year-old Thing2. Our family conversations are hardly devoid of any meaning, but tend to focus on “what’s for dinner?“ and “can you pick up the kids?“

The only other regular conversation I have is with my blog. It has helped me deal honestly with bipolar disorder and embrace the dinner table stories that I once pooh-poohed. Over the years, however, that conversation has also led me to question if I was living in my truth and how to get to a place where I could.

One of the truths I discovered over the last few years is that I need to write and draw. When my life gets too congested to allow for a regular time for art, I have resented it.

Last fall, I reorganized my life to carve out time for creativity while building a new career that served the greater good. I started working weekends so I could go back to school, temporarily bowing out of a weekend writing class that had helped keep the spark lit for several years.

Murphy’s Law, however, is still in effect. My precise work schedule surrendered to the chaos of the holiday shopping season. And the bottom dropped out for Thing1.

Thing1 was diagnosed with an auto-immune disorder a year earlier. Despite promising early results with medication and severe diet changes, Thing1’s body began shutting down a few days after Christmas. It was barely a week into winter when, knowing which battle mattered most, I withdrew from classes.

Thing1 was hospitalized near the end of January for assessment and treatment. As he lay in recovery after a procedure, I struggled not to cry as his doctor told us that his illness was quite severe and laid out his options. Some required injections or infusions. All of them carried a risk of lymphoma, one of them fatal, especially in young men.

When we got him home, we focused on getting him back to ‘normal’ but quickly realized ‘normal’, like much in life, is an ever-moving goal post. We worked with the school to make sure he stayed on track. We worked with doctors to get him through flu season, keeping them on speed dial through nervous nights.

And, when time permitted and sanity demanded, I blogged.

I still get weepy at night in bed when everyone’s asleep or in the car when no one’s around, even though I know we’re incredibly lucky. Every time I pick up a prescription with an $800 copay that’s been covered by my insurance from work, I know we could also be sitting at our round kitchen table trying to find things to sell to pay for each drug or worrying about bankruptcy.

Long before this blog reignited my creative spark, Thing1 was teaching me patience and determination as I had never understood them before. The self-doubting, self-hating person I had once been before his birth was dissolved in the breast milk and tossed out with a meconium-filled diaper, leaving only Thing1’s mom who had happily reorganized her entire life around his needs.

So when my college sent out spring registration notifications, I knew I would not be signing up. I also knew I will be carving out creative time around my current career until I’m sure Thing1 can fully stand on his own and obtain his own sufficient insurance,

And that’s okay because there are two truths in my life. And, as Darth Vader once said to his offspring, “There is no conflict”. Not for me.

My truth is that creativity matters to me. My bigger truth and the key to living an authentic life for me is that without being true to Thing1 (and now Thing2), I don’t know that anything could keep that creative spark lit.