Because I Have To, but Also Because I Want To

Praise All Scars - Detail of Mixed Media Collage by Crystal Marie

I'm having a hard time focusing today. I woke in all sorts of pain, went to bed last night feeling this way, but this morning it seems amplified. Like somebody turned the volume up, so I can't relegate it to the realm of background noise the way I normally do. 

This is the whole body, nerve endings on fire, stuff that people with chronic illnesses like fibromyalgia experience. It's especially pronounced on my backside today - back of my calves, my legs, my feet, my poor gluts! Spread across my shoulders, down my back, and oddly across the backs of my arms. My cheeks almost always feel this way these days. It's that tingling pain sensation that I suppose is the nerve endings twitching or spasming. 

Yesterday I skipped all three doses of my meds - starting accidentally with breakfast. When I didn't seem to have a reaction, I decided to try going without for the whole day, knowing that after the holidays, I have to go off of them for at least a week to do the labs the doctor ordered. 

This is the kind of pain you can't escape from, like a tooth ache kind of throbbing and pulsating with every heartbeat. It's hard to ignore when it ramps up like this, and yet it tells me the meds have been doing a better job then I realized. The rampant inflammation I've been working with my doctor to try to get under control for years, seems to be connected to the mast cell activity. At least in part. At least that's my theory now, after a day without meds and winding up this inflamed. 

I keep encountering situations where someone tells me how good I look (compared, especially to where I was just a few months ago), drawing the conclusion with their comments that it means I feel good too. Congratulations are often offered, as a celebration. As a way of saying "You did it! You licked this thing!". 

But even without this flare, I have been responding more honestly, that this illness is invisible. I am never fully without pain or exhaustion. Exhaustion to someone without chronic illness is being tired at the end of a long physical day. Or maybe the result of a single bad nights sleep. Exhaustion to someone who has chronic illness is not the same as being tired. It is the whole body muscular fatigue somewhat similar to what you experience with the flu. You know, like that day when the fever has broke, and you suddenly feel better, and you think you should get up and go to work, but then you take a shower and can barely manage to crawl your way back under the covers. That's what it's like all the time for me. Every single day.

Some days it is more severe than others, like it is today, but it is never gone. When you see me, no matter how I look, that is what it feels like inside. It's hard and it sucks. And every day I have to make a choice to get up and get things done anyway. 

How do you do it? They ask. 

I do it exhausted. I do it in pain. I do it knowing full well I will be on the couch the minute I get home, and in bed hours earlier than most. I do it knowing I will not manage to get up at a decent time most mornings. I do it because every time my mom had a migraine, or was ill enough to need to rest, my dad accused her of being a hypochondriac, and I still have that faulty messaging that flares up as often as the inflammation. I do it because I still need to eat and keep the lights on. 

I've been making a really big deal out of the need to transition from doing so many workshops live, to creating online courses to support myself and better manage my health. I announced that the last big workshop I had in my studio, would be the last big workshop in my studio. I announced that I would not travel to teach much at all next year. But the reality of my financial need does not afford me the fast transition that I was hoping for. 

There is a learning curve involved in filming, editing, and hosting online courses that is taking more time than I'd like to give it. I am getting there. And I am really super excited about the ideas for some of the coursework that has been bouncing around in my head, but brain fog from inflammation makes the learning feel like walking through a field of waist high molasses. 

I'm not sure why I felt compelled to write this today. Other than waking with pain levels on high, and energy levels on low. I start to despair of it all. Someone asked recently how I do it. Today I can see that it isn't so much a how, but a why. 

I do it because it is what I have right now. I do it with the hope that the illness doesn't consume me before I can manage to figure out another way. I do it with a smile on my face, through gritted teeth, hanging on and counting the day down by the hour, until the moment I can fall back in bed. I do it with rewards to myself- like days working in bed. And days not working in bed. I do it, not to try to fool you, or to deny reality to me, and not even just because I have to. Though I do have to, as I explained. 

I do it because I love what I do. I love the teaching, and the art making, and the studio. I love the people there, and the people I meet when I travel. I love these things. They make my life seem worthwhile. They give me a sense of purpose. Without them, I doubt I would feel so motivated to rise. I think this illness has made me even more aware how very much I love the things I get to do. Yes, I do it exhausted and in pain. I don't have a choice, but then again, I do. 

I do it because I have to and also because I love what I do.

This Is My Marathon

After a day spent resting, I managed to drag my weary carcass out of bed to make some dinner and watch a little TV Monday night. Flipping through the offerings on Amazon, I am tempted to numb on the usual sappy Christmas movie in which the story line is always the same; Some single workaholic woman comes to a small town to dispense with inherited property, some hunky townie rescues her from an ensuing snowstorm, sparks begin to fly between them, until her boyfriend, the big city developer who is working out a secret deal to turn her hotel into a parking lot, or a coal mine, or a high rise condominium to house misplaced seniors in order to steal all their cash, shows up. After a wood chopping contest in which her city man loses shamefully, she realizes hunky small-town guy is way hotter, if not a wee bit less ambitious, and they fall in love after sparring for most of the show over her decision to sell off the most loved residence in town, or her inability to bake cookies without getting flour all over her nose, or her lack of sensible footwear. Also, she realizes she is too independent and no nice guy would ever want to marry her, so what a blessing to have been rescued by hunky guy before it was too late. But still, there is something comforting in the familiar. Nice Christmas music, nice snowy mountaintop inn, nice warmhearted good feels, just a background movie to keep me company while I set up the very (very!) skinny Christmas tree I ordered from Target.

But scrolling through all those holiday listings with my cynical thoughts about the message that being ambitious is not a desirable trait for a woman, and that helplessness in fact is the most adorable attribute we can aspire to, and that happily giving up everything we’ve worked so hard to achieve in order to absorb ourselves into the life of a man who obviously knows what is best for us -- don’t even get me started on my even more cynical thoughts about the lack of diversity in these movies- it hit me that maybe I’ve moved on from this stage in my life. I wasn’t choosing out of the warm fuzzy places of previous years, longing for a storybook ending of my own. I was acting out of habit, reaching for something familiar, no matter how empty or dissatisfied I knew it would leave me. Somehow these holiday movies have become the hidden package of Oreo’s snarfed down at 3am. Empty calories that leave me with a desperate sense of self loathing after a binge.

Instead of giving in to the impulse to numb myself in the seasonal comfort zone, I picked Brittany Runs a Marathon, based on a true story about an overweight woman determined to pull herself out of a self destructive rut by running in the New York City Marathon. Throughout the course of the movie, she encounters obstacles to her goals that tempt her to return to her old ways and admit what a loser she is. She has to ditch toxic relationships, leaving her vulnerable to the feeling of being utterly alone. A new circle of friends step in at the critical moment, but Brittany refuses their aid, believing somehow that their gesture is out of pity, which reinforces the message that she hasn’t changed one bit, and ultimately costing an entire years delay in achieving her goals. 

In the end, every single one of her new friends show up to cheer her on when she’s just about to quit. Because they were there for her at the most crucial point, she is able to literally pull herself up and rally to complete the race. She makes it over the finish line, triumphantly changed by the kind of strength that is soul deep. Called out by the encouragement of others who saw her worth before she is fully capable of understanding how she has diminished it. She finally understands how worthy she is to receive friendship and love. How very much she has to offer in return, as a peer, as an equal, without shame for her body, or herself as a person. Those final minutes of the movie found me weeping like a danged fool. Hefty sobs welled up demanding my attention.

Last year, for the first time in my life, there was no tree to decorate the living room. No planning the family gathering on Christmas Eve day. No decorations or stockings hanging in anticipation. Only boxes, and bubble wrap, and yards and yards of tape. I was sick, broke, scared, and leaving my toxic marriage for what I knew was the last and final time. Letting go of nearly 20 years of broken dreams and broken promises, wrapped in a blanket of shame, and regret, and the dawning awakening to my misplaced guilt for the failure of it all. 

I faced down obstacles with an ever present inner taunting of the old belief system to throw in the towel, just admit what a loser I am! At my worst moments, I nearly did give up. Maybe changing my life was not in the cards for me anymore, maybe the victory stories of others were simply hallmark movies meant to distract me from the truth, or maybe it was only possible for other people to overcome, that somehow I really was too flawed for redemption. 

Come back! Those voices taunted me. You can wrap yourself in that old sweater you love so much! The comfortable one that helps you forget your lofty fanciful dreams. Never mind the holes and worn tattered fabric. Never mind that it is no longer a good fit, or that it smells of mothballs and old lies! Hunker yourself down right there and let what's familiar lull you back to sleep. Stay! Sleep! Get lost in the headiness of those dreams! It is safer here!

Flat on my face on the proverbial pavement of life, the evidence of circumstance convincing me no progress within had been made, a friend would step in and gently pull me back to my feet. Offering me a place to stay, a car to drive, a shoulder to cry on, an ear to listen, the financial support to get to a healthier place. And most importantly, a new message to replace that worn out track from the past. 

As I stood there unfolding the tinsel branches, watching Brittany cross the finish line with her friends cheering her on, I scanned the living room and home around me. I know I wouldn't be here without all of you. It is a place of restoration for me. I’ve been slowly decorating it in a way that feeds my own soul, in colors that calm and soothe, and truly reflect me. It represents a new way of thinking of myself - a human who deserves to be loved. Tears and sobs escaped in great bursts, not in sadness, but something akin to a feeling of joy, mixed with laughter. I knew in that moment I had crossed an important finish line, and audible words came tumbling out – This is my marathon! 

No longer do I believe that I’m too flawed to be deserving of a healthy relationship, that I have to accept scraps from someone too stingy or broken to give me an equal portion. No longer do I have to endure the emotional battering of projected pain, or the weight of another’s shame. No longer do I have to cover over the secrets of an abuser, or risk being expelled from The Family, rejected by generations of mothers grounded in their own conditioning and fear. No longer will I ascribe to a system that teaches life doesn’t start until I’ve achieved perfect coupledom, proving my worthiness to receive love through sacrificing of my own precious self. 

In that moment there was a deep knowing that I’m going to make it. My legs are no longer cramping in protest of the run. I’m no longer under the fog of believing it doesn’t count if I need a hand up. Being alone isn’t lonely, and it isn’t merely a consolation prize to all that I missed out of in life. I am hitting my stride. Growing stronger, more determined, confident in this place. I am eagerly anticipating what is to come. Yes - 

This is my marathon!

Enough

It’s the long awaited day of rest with a stack of books at my side. The last event of the year, the annual studio open house, is over and I get to call it a wrap. I want to say my mind immediately shifts towards Christmas cheer and the love of family, eagerly looking forward, with anticipation, to all that 2020 has to bring,  but in this state of exhaustive reflection, it spirals.

Will I have enough? Is a running thread in the self fear anxiety talk. It lands on top of the laundry pile of self-flagellation that could be summed up with one question, am I enough? Along with it’s faithful companion, as if that question were a single sock to a perfectly matched set, Am I too much? 

Today I am thankful to have the time to lay here and soak in all those thoughts. All the memories. All the messages that arise in the process of clean up, set up, show up, cheer up, tear down, and all that is involved in preparing for, and recovering from, such an event, after a long succession of other such events. 

I will let the questions flow through me, pass over me, swirl around me, and drift from me, until I am left with only one verse. The chorus line to the anthem of life. Enough. 

I am enough. 

Hanging the Shields show in the studio for the Open House

Storm and Silence

Storm and Silence  Mixed Media Assemblage
by Crystal Marie Neubauer

There is the silence that comes before a storm and the silence that comes in the aftermath. One is strangely foreboding. The light is a dull, flat, gray, and even the birds stop singing. Birds always seem to know when there is danger. Perhaps they catch ions in the air in tiny receptors in their feathers.

The silence that comes after the storm is fresh. It is dawn. A slow awakening. 

Nature takes inventory of all that was lost and all that remains. A new course is set where passages have been blocked. The light that comes with the silence after seems to dance with new possibilities. Highlighting what was not lost, revealing what the high waters washed upon the shore. 

A resilience has been realized through the efforts of hanging on through it all. Where once there was fear of what could, would, should be, now there is peace. It is settled. The winds, the turmoil, and the questions that arose with the waves. 

Am I strong enough? Will I survive this thing? Will it leave me laid out on the shore, or standing as strong as if the waters never touched me? 

The answer comes on the breeze of a single song birds sweet cry, 

"yes". 

Today Is The Big Day And I Need To Ask A Favor

"Earnestly I Seek You"   10" x 10" original collage by Crystal Marie Neubauer

It has been seven months this week since I first shared my health diagnosis and it's time for an update. 

If you hadn't caught it back then, you can read the original post at this link, the one that I shared with you that I had been in a rapid decline since the summer before, losing over a third of my body weight in less then six months with an escalation of symptoms from a host of auto-immune and chronic illnesses that I have been dealing with most of my adult life. It all came to a head during my long teaching trip at the beginning of 2019, when my symptoms flared and left me bedridden in my hosts home, where I just managed to pull off teaching my workshops, but left the gracious host at my first stop bewildered on how to care for me. 

I've written a few updates since that time. I saw one specialist who ordered some tests and recommended a few prescriptions that have helped me to stabilize while I wait to see the big specialist. I've gained about a third of the weight I lost back, going from just hanging on to 98 pounds in April, to a more healthy looking 115 pounds today. I can eat more of the trigger foods most of the time, thanks to the meds, but they still cause symptoms and the meds seem to be taking a toll on my kidneys and liver function, which have both been damaged over the years from both Lupus and Lyme disease, and most likely the mold exposures that have contributed to the severity of my symptoms.

Physically, most days are difficult still. I am worn out from normal activities, and deal with daily chronic pain to varying degrees, which escalates later in the day until I hit a wall and can't push through. The wall changes daily, but I'm grateful that on many days, I can still manage to put in my time at the studio, and perform the tasks at home that need to be done to care for myself. 

My recent teaching trip to Arizona, while rewarding in the connections that were made there, was difficult and a reminder to me that I am not capable of managing the level of physical work that I used to be. I have been turning towards creating smaller, shorter workshops that are easier for me to manage, while beginning the process of creating a series of videos on the use of encaustic wax with alternative substrates, which I hope to be able to release as an online course by spring. 

There are still a lot of questions as to the stage of the disease and, I'm praying, still solutions to be found towards improvements in my day to day quality of life. And today is the day. The long awaited appointment with the top specialist of this more rare form of mast cell disease, mastocytosis. Doctors who specialize in Mast Cell Diseases practice in multiple disciplines. This one is an endocrinologist, a thyroid specialist, which is the perfect fit for me, since I lost my thyroid to disease activity some years ago. There seems to be some connection between hormones and mast cell activity that she will hopefully help shed some light on.

As of end of May, I lost my insurance. I've been paying for most tests and appointments since that time out of pocket, and foregoing certain appointments while I waited for the promised new insurance to kick in. Except that the promised new insurance isn't happening now. I don't want to muddy the waters of this share with the details, except to say that I am devastated to be told this just a week before my appointment. 

I have been waiting for this appointment for six months. It cost a hefty deposit up front just to make it, with another hefty amount due when I check in. The insurance would have covered the extensive lab work and tests the doctor will need to order and that I have been holding on waiting for. 

So today will be out of pocket, and I'll ask the doctor to map out a reasonable plan to pay for labs out of pocket and see what tests can be put off until I can secure insurance or funds to move forward. 

And this is where I need your help.

I have taken measures to get the healthcare and funds I need to support myself in the future, but today is the big appointment, with the labs and the tests and new meds, that I am hoping I will not have to put off any longer. With your help, I can move forward in my medical care, and in my quality of life without losing more precious months waiting for new insurance to kick in.

If you feel so inclined, here is how you can help: 

So many kind and generous people responded to the original gofundme campaign when my friend Jana launched it back in April. It was exactly the boost I needed to get myself moved to a new home, treat the air in the mechanicals when I got moved in, cover the fat deposit for the specialist I'll be seeing today, and provide me with the funds needed for meds, labs, special food, and all that I needed for that major transition point in my life. But it was so much more than funds for the needs that were met. It was a life changing display of how much support and love there was surrounding me. So much so that it wasn't just my physical body that benefited, but my emotional self began to heal at a much deeper level too. I am resurrecting the account for a time. You can find it by clicking this link. 

If you are an admirer of my art and have wanted to add an original work to your collection, I have a pop up shop on Facebook at this link, with works that are retired, were book or class samples, have been in my personal collection, and works that have been reimagined. Directions for purchasing works are included in the album.

Locals may be interested in my December Friday Night Lite. Details and registration can be found at this link.  

I have a print sale with a concurrent raffle opportunity at this link. 

And finally, for the long term, my only longer workshop of 2020 on the calendar will be happening at Way Art Yonder in California in March. Details and registration can be found at this link. 

My Shields show came down on Sunday and what wasn't sold will be hanging in my studio for the December Holiday Open House at my studio. You can still purchase at this link before much of what remains heads off to my gallery in Scottsdale. Simply choose the design you are interested in and message me at crystal@crystalneubauer.com for a shipping estimate and invoice. 

It isn't easy to ask for help. Everything in me resists this. It is humbling and uncomfortable, but it is also the most incredible feeling to know how many people are out there, who want to see me get well and succeed. With your help I know I can make it through this difficult year and find a way to continue to provide meaningful content and art for years to come.

With so much love and gratitude. Thank you.