This Blog Is About To Get Messy!

The Acre Of My Soul   
  Collage Mixed Media Assemblage by Crystal Marie

Oh the bunny trails I can follow when I'm avoiding doing what I should be doing. The shoulds should mean the stuff that is unpleasant to do, but really I can twist the most pleasant of activities into a should if you give me enough time. This morning I should be writing. Because I want to be writing more. 

Yesterday I went crazy and broadcasted live from Facebook with a radical idea for my blog that might not sound so radical or earth shattering to you, but  because you're not the one about to get naked in the middle of Times Square. 

Okay that might be a little bit of an exaggeration, but that's the feeling of it for me. To decide to get more raw, more real, more truthful and honest here on the blog in my writing style is to expose the thoughts behind the thoughts I typically show you. To be messy here means to stop editing myself out of fear of what some mysterious internet reader, or a long lost acquaintance, or friend who's ghosted me, lurking around on social media might think.  It is to stop trying to put a positive spin on everything out of concern that you, my readers *(reader? Is it still just you out there mom?), might think I sound like a victim or a drama queen.

Some would say I’m addicted to drama. They see someone who’s life seems to always be in chaos and they say maybe I'm just addicted to the pain. They don't see the woman who is pulling herself out of a pit of early dysfunction and conditioning, and attempting to pull others out with her. 

But I’m done with that self blaming talk- not done like I’ve conquered it- but done like I’m actively working on recognizing all the ways the Insipid blame the victim game works inside my head. It doesn’t serve a higher purpose to self-flagellate and it sure as hell doesn’t lead to recovery. It simply serves to shame the person into going even further into hiding.

That’s what addiction really is, it's hiding to numb old feelings of abandonment, fear of rejection, inadequacy. A sense of not belonging. 

It is the action, the symptom of the issue, not the issue itself.

Those behaviors aren't caused by addiction, they come from conditioning. Addiction is the thing I do to try to run from, hide from, or even agree with that conditioning. Addiction doesn't always look as destructive as we think. Addiction is simply the actions we take to numb the conditioning. 

Taking drugs or alcohol, maxing out the credit card, hopping from abusive relationship to abusive relationship, people watching, and judging others (so much easier to do anonymously with the internet now), mindlessly scrolling through social media, people pleasing, perfectionism, codependency, these are all the addictive behaviors we act out of desperation to numb, to hide, to avoid what we really want. 

To belong. 

Because we don't think we do. We might believe we don't deserve to, or that we're too flawed too. We might have found ourselves as odd man out so many times we believe the only way to find acceptance and belong is to pretend to fit in. To present to the world a persona. We put on masks and pick up shields to avoid rejection. But this armor we believe we need to be accepted by or cope with the world, is the very thing that actually prevents the world from knowing us. From seeing us. From connecting with our true selves. Our true flawed and broken beautiful selves. 

It keeps us from truly feeling like we belong. 

So here I am. Putting down my armor, shield after shield. One layer at a time. I'm committed to showing up here and relaxing a little bit more. Letting go of the fear of rejection - which I manage by carefully curating what I write. Letting go of my need to please you by always putting a positive spin on even the most miserable of situations. Laying down the armor of people pleasing and control. The one that is the chameleon to help me blend in. The one that is more concerned with hurting your feelings then telling the truth. 

This blog is about to get messy because I plan to write more of what I really think. To stop editing and curating and spinning my life to make it more palatable for an imaginary critic. I might swear a little. Or a lot. I'm sure I'll express opinions you disagree with. There might not be a happy conclusion. Or even a conclusion at all. Basically this is going to be my morning dumping ground before the coffee kicks in  enough to stop me. 

So if you just subscribed because you watched that facebook video, welcome to my mess. 
You've been warned. 

The Good, The Bad, The Ugly, And The Sublime - A Progress Report In That Order

Hope Medallion - Encaustic Mixed Media by Crystal Neubauer

Looking back at the date of the last post, I realized it was time for a progress report of sorts. Here's the skinny on the time that has lapsed in the past month. 

I continue to get settled in to my new home, a lovely townhouse in a beautiful community in Gurnee, Illinois. It is 40 minutes to my Racine studio, but an easy enough drive, which I am committed to making at least twice a week. 

I made the decision to move back to the Illinois side of the border for a number of reasons, not the least of which is to be closer to my children, grands, and several close friends. My doctors are all located in Chicago, and I've applied for and received my license for medical marijuana. Shocking I know, but it is the only thing that's even come close to helping with the chronic insomnia that is a major symptom to the illnesses I'm living with. No weird side effects, no new meds to control the symptoms caused by other meds, and the added benefit of helping to manage my inflammation, which is astronomical in lab numbers, and the pain that it causes. It is also reported to kill the Lyme virus.

The home - it really is lovely. Each day I've gotten a little more organized, a little more used to waking up in this space, and a little more attached to this feeling. The one that feels like love and light and gratitude. So much gratitude. 

I've spent the month and a half since moving here reflecting on the astonishing response to the gofund me that my friend and guardian angel, Jana started for me. The ability that money has given me to relocate, not just flee a bad situation (read that post here), but to actually have the peace of mind of knowing there were deposit monies and first months rent, moving helpers and truck money, and all the millions of little expenses that chip away at the savings during a move. I can't really describe that feeling yet, it's still feels fairly new to me. 

More than knowing that there were funds available to help me get set up in a new place, to pay for the initial doctors visits and labs not covered by insurance, and the meds that have been helping me get physically stable, has been the feeling of being lifted by a community, bigger, wider, deeper, than I ever understood was there. 

You all had my back. And then some. 

Letters, messages, cards, and gifts of encouragement continue to come - and I continue to receive each one in awe and gratitude. This above all else, has been a defining moment in my life. I close my eyes and see myself being held - skimming across the top of a crowd of people, hands outstretched to lift me, as if surfing the crowd at a rock concert. I still can't quite describe that feeling. 

Physically the move has been one of the hardest I've ever experienced - and people who have had to devote entire pages in their address books to updating my information can testify to the enormity of that statement. Emotionally, well, reread the few paragraphs above. The daily waking to a profound sense of emotional well being regardless of physical status is more than I can put words to. Thank you. Thank you. And a thousand times thank you.

The initial doctors visits yielded a prescription for Ketotifen and an over the counter supplement called HistDAO. One is a histamine blocker, the other breaks down histamine in the stomach, and both are mast cell stabilizers. The consistent use of these two products has helped diminish that constant stabbing pain in the gut feeling, alleviate most of the pounding heart, and many unfortunate bathroom symptoms after a meal or an environmental trigger, broke the whole-body migraine that nearly crippled me, eased some of the facial flushing, and has enabled me to start adding certain foods slowly back into my diet. As of today I've gained 10 pounds back - and let me tell you, the difference between 98 pound me and 108 pound me went from looking like a sad nutritionally starved anorexic teenager to a slightly underweight but leaning towards better life adult woman. 

Life is good - but many challenges remain. The next steps on the health front involve more tests and upcoming appointments. Exploring other meds to add to the regimine, and still to be determined stage of the disease progress. 

The month of June was brilliant, beautiful, rare in the midwest, with daily temps hovering just below 80 and low humidity levels reminiscent of my stays in California. Each day I started out sitting with the dog on the back deck soaking in the rays and sweet breezes. But summer has arrived, and with it, the need to turn on the AC. This is where my story takes a turn. 

The new house has mold in the HVAC system. 

I am devastated at this realization and at having to report this. It's toying with the old ingrained sense that I need to make sure everyone else is okay and that I'm responsible for what you think about me. That's a screwy sentence to write, but bear with me. 

I can't wrap my head around the fact that this is the sixth home I've moved to with a mold problem. I can't wrap my head around the fact that I only rented the last home for six months, two and a half of which were spent staying in other people's homes. I can't wrap my head around the fact that I was meticulous in my search for a safe, clean environment. I didn't let myself look at the old houses that I gravitate to and love. I let my nose do the inspecting after ignoring tell-tale mildewy smells in said older homes in the past. I opened closet doors, inspected the utility closets, counted the cost of air quality living in apartments, verses houses, verses the townhouse I finally chose. I was eager to get on with it, but I didn't let my actions become desperate - that was part of the gift from you all with the support you gave. 

The ugly truth of it is that living in the US, more then 50% of homes have had some sort of  water damage and a good majority of those are in the midwest and southern states. With my genetics, and compromised immune system, multiple former exposures to toxins - mold, Lyme, and last years food poisoning, have left me with a full bucket of toxins and a system that has a very difficult time properly emptying that bucket. An average person with a healthy immune system and functioning detox pathway could live with this level of exposure without much notice - the exposure is not good for anyone long term- eventually there might be tell-tale symptoms like sinus allergies and unexplained illnesses for most, but for me - with that bucket already full, the symptoms are more serious and come on more quickly. 

I've been hard pressed to talk about this to many people. I get stirred up in the "what will people think" and "no one believes me" lies that have bound me for most of my life. Don't even get me started on the one that says "you got what you deserved." Hell, I don't want to believe it so how can I blame you for not understanding? But here I am, living in a new place that I am in love with, dealing with the very thing I moved here to escape from. 

So what now? 

Luckily, at this time, the problem seems to be contained in the HVAC system - only presenting itself to me upon turning on the AC. So I purchased an enzyme solution recommended by the remediation company that my mold health group recommends, talked to the landlord's brother (he's responsible for the carpentry and maintenance of the properties),  and he took the unit apart piece by piece cleaning it with the solution meticulously. He spent hours on it and reassured me that if the problem continued, he'd go into the crawl space and open the ductwork and treat it from down there. 

This week the temps have dipped again, though Wednesday it was nearly 100 so there was a brief time of AC and so far so good. Some of the exposure symptoms remain - but I am in a wait and see, don't panic frame of mind. If the problem is indeed only in the system - which isn't uncommon for central AC units, then fingers crossed, and prayers said, the solution is enough to remediate it. It is when there is water damage to the structure of the house that it becomes too big to be safe for me to hope for remediation. Add your prayers and light and energy and well wishes to mine for a good outcome to this unexpected bump. 

Work wise, there has been good progress on the shield series for my solo show opening at RAM Wustum Museum in Racine next month. The ideas that have been pouring in have begun to take shape in the studio. But I'm down to the wire and don't have time to do some of the experimentation I had hoped to do for this series, this show. I've promised myself to keep playing with these materials even after the show is hung. I've been posting progress shots of the works on my Instagram account here. 

I'll be taking a short break once the pieces for the show are complete, to clean up, tear down, and reset for my September workshop. My wheels are turning for future endeavors and ways to make the actual studio profitable enough to justify keeping it. I'm badly in need of some time to start developing my video courses -  time has been flying by with the focus being on the move and the RAM show.The pop up shop will open Monday - with expressions of interest having first dibs at the offerings on Sunday. Keep an eye out for it here. Leave me a comment on the blog below (be sure to include an email address) for the Sunday advance opportunity. And sign up for my newsletter here if you don't want to miss out on this or any of the future pop ups planned. 

This time there will be a series of 4" square encaustic paintings, each with a small bit of a book spine set in the middle, which symbolizes inner strength to me. That spine of the book is typically hidden beneath the skin of the books cover, but it enables the book to stand - and it is what I have hidden beneath my own surface, the stuff on the inside most eyes cannot see, that enables me to stand through all of the challenges and thrills life has sent my way. 

It is the spirit of those whose arms are raised to lift me, the spirit of my own being, The Spirit of a God who loves me, and the spirit of knowledge, and hunger, and thirst for living my best life, not in spite of these challenges, but because of the transformation happening through them. 

It suddenly occurs to me I actually do know how to describe that feeling. It is sublime. 

It's Not About The Day, It's About The Pattern

There are always things to purchase when you move into a new home. The curtains from the old place don't work, the shower caddy from the other house didn't fit the new shower correctly, the laundry area has no place to store the detergent, etc. Of all the practical things I needed, one of my first purchases for my new home was this door mat. I looked at some pretty sweet styles, brightly colored, seasonal, funny sayings, but the one that made my heart leap was this one that simply said "home sweet home". 

God I hope this fortune cookie prediction is true. 

In spite of all the helpers and love and support I've received, this move has been really hard. The day after moving day, my oldest daughter and her little family came to help me unpack. Her first words still ring in my ears, "Mom, just remember, there is no deadline for unpacking. Take all the time you need."

Wise words but hard to heed when there is so much to do. I've been plugging away each day unpacking boxes and trying to decide what goes where. The process takes extra time because each item has to be cleaned before it can be put away to ensure that absolutely no mold spores from the old house make their way into the new one. 

I've spent a small fortune on special cleaners and enzymes. If it is made of fabric, it goes in the wash with special detergent and an additive designed to kill mold and mycotoxins. If it is a hard surface, it gets sprayed and wiped clean with a special surface cleaner. There is special dishwasher detergent for all things kitcheny. And if it can't be cleaned with any of these methods, it either gets sprayed with a special enzyme that eats mold mycotoxins, or it gets thrown away. 

Each thing. 

Each and every item that is part of a household, no matter how tiny or seemingly insignificant - makeup and hair products, nail clippers, chotskies, magazines, office organizers, clothing, bedding, each thing that I unpack, utilitarian or decorative. It all has to be cleaned before I can decide where it goes in the new place. 

I've become somewhat obsessive with the cleaning, also with the arranging of my things. 

In the midst of it, I realized I am nesting. Building my sanctuary. A place where I am safe and can begin to heal. To care for myself as if I really do matter. Not that I have flat out ignored my health in the past, but it was always treated like a nuisance, something I had to endure on my own without much complaint, and maybe with a small dose of shame. Okay, a pretty hefty dose of shame. 

I've had something of an awakening about how I've treated myself in the past. How I've acted without mercy and without compassion towards myself for not being able to do everything. All the time. On all the days. Perfectly.

Not to say that suddenly I'm so enlightened that I'm never mean to myself anymore, but that this awakening keeps presenting itself to me as a challenge. Will you heed to your own needs today? Will you treat yourself as kindly as you would a friend, family member, or even a stranger?  If I spend a few extra dollars on something pretty for my home, I'm allowing the voices that get excited for it to be the ones that prevail, while reassuring those frantic guilty voices that it's going to be okay. That creating this safe harbor and making it as comforting and comfortable to live in as possible is okay. 

My present plans include being in this one place for many years to come. To dig in my roots in this one place. To focus on caring for myself like never before. To write and to read and to live and breathe and heal. To find peace in my home. My own safe harbor. 

God these are the plans I bring to you. Will you bless them? Will I?

Even with this new awakening to the call to be kind to myself, I find I am still acting out in my old behavior patterns some days. I woke yesterday exhausted and feeling a rise in my symptoms. I had to reschedule a hair appointment and canceled my weekly play date with my granddaughter. Yet, I couldn't let myself rest like I intended. I started to feel a tiny bit better midday and decided it was okay to do a few errands. 

I blame this medicine. 

It's been something of a godsend after the mastocytosis diagnosis. I couldn't tolerate it at first, but the mast cell doctor had me try again by rubbing small doses of it onto my gums. It has been helping to calm my system and allowing me to eat certain foods again. I've had some pretty good days since I started using it. My energy levels have improved and I started to have more hope for a better future. For the first time in months, the stabbing pain in my gut was gone and the whole body migraine finally broke.

When that pain cycle finally released me from it's grip, it was startling. I hadn't fully grasped the severity of it until it eased. 

And then the move and all the activity involved. And then the nesting. And then little by little, I let myself forget how bad it was. And little by little those old behavior patterns started to creep back in. 

Activity is both a necessary part of life, and my kryptonite. 

Overfunctioning is my go to dysfunctional behavior pattern. One that goes back so far in my personal history that it is perversely comforting. I can operate under the delusion that doing all the things I do, doing them well, and doing them all RIGHT NOW, are saving me from complete disaster pretty damned convincingly. I tend to slip into doing things in a frantic zombie-like state in an effort to prevent all disasters from happening to me ever again rather easily. Dysfunctional behavior patterns are a part of most of our lives. If you're human and you've got a past of any sort, you've developed your own ways to help you cope with the uncertainties of life. 

My wiring as a highly sensitive, intuitive person tends to make me keenly aware of all the things that can go wrong at any given point. My inner fear driven voice tells me that danger is lurking around every corner and that the only way to stay safe is to control the circumstances with activity. What looks like danger to me doesn't necessarily look like danger to you, and vice versa. 

Recently the dangers I've been trying to ward off with my zombie level activities have been centered around finances and the ever-present fear of what other people will think of me. 

There have been a lot of necessary expenditures hitting my bank account. I'm careful about it, but some of those expenses are fairly big - a moving truck, moving helpers, the aforementioned special cleaning products, deposit monies on a new home, new utility connections. As the bank balance decreases, my anxiety increases, and I start feeling panicked that I'm not bringing any income in during this transition. Instead of doing any self-soothing, or asking for help, I start ramping up the activity in an effort to get it all done faster so I can get back to work sooner. 

Zombie control says if I'm productive enough I won't lose everything I've worked for. Zombie brain agrees that it will be my fault if anything bad happens to me again. 

At the same time, I've been learning about self care and how important it is to give myself this place to rest and rejuvenate. I'm learning about healthier behavior patterns centered around including my well being in the equation. If I have any hope of making the transition to creating online coursework to replace the workshops I've been teaching as a source of income, if I have any hope of giving myself a life that doesn't revolve around panic driven anxiety and chronic illness, I need to change the behavior patterns and thoughts that drive me. 

I need to listen to what my body has to say. I need to take this most seriously.

I'm giving myself permission to make this nest cozy, and pretty, and restful. Not going crazy with it, but adding small touches that make me feel good. I'm choosing a color pallet of soft blushy hues and adding small feminine touches. Even though the new place is still quite chaotic with all the half emptied boxes, and things I don't know where to put yet covering most of the surfaces, there are little sweet spots starting to take shape. I can sit in these sweet spots and relax, and I catch myself feeling happy. 

Like really, really happy.

And then I start feeling guilty that I bought that rug when the money could have paid for a tank of gas to get me to work. The accusing voice in my head starts telling me that people will regret helping me because I'm frivolous and took them for granted. The "what will people think" voice starts freaking out about the calm. I can't sit in the sweet spot too long, I have to get up and prove my worth with extra busyness.

And zombie brained extra busyness is what brought me here today. Sitting in bed at 2 in the afternoon with a heating pad soothing the stabbing pain in my gut after a night spent in a full on flare up of masto symptoms. It was not pretty. Or restful. Or clean. To say the least. And the rest I am getting today was forced on me by a body that gave out in protest. 

But you know what? I've decided I'm not going to beat myself up for backsliding. I'm not going to agree with the false belief that this is evidence of my inability to change. Because change doesn't look like a straight line trajectory. It isn't a happy little hop and a skip and a jump from A-Z. Change is a steady progression over time and it can be messy. 

There are good days. There are really, really happy days. And there are days when you sit in bed with a heating pad reflecting on it all. To quote Jane the Virgin- It's not about the day, it's about the pattern. 

And I know my patterns are starting to change. 

  

Catching Up With Blog Readers: Facebook Update From May 27, 2019

"Onesome"  24" (approximate) Collage Mixed Media Assemblage by Crystal Marie Neubauer

Hello dear blog readers. I'm afraid I've sadly neglected you in favor of the ease and more immediate gratification of social media posting. It is my intent to begin utilizing the blog more for my writings and musings, and cross share these posts to my social media accounts, rather than the reverse, of posting my writings on Facebook here after the fact, but in the interim I am attempting to fill in some of the gaps in my story with these shares.

The following post was written on Facebook May 27, 2019 and I'm happy to say that the response to it was a positive one. Four of my studio neighbors and one friend/former student heeded the call and we knocked out the packing I thought would take all week, in one afternoon. Be sure to check out the photograph of these beautiful souls below the post: 

Good morning friends, this is my semi-sort-of-biweekly update on life interrupted;

I’ve found a place to move and I’m pretty excited about it. Of course I can’t say with 100% certainty that the air quality is safe for me until I’m actually fully living there, but I did my best to be as discerning as possible as I searched. And because I have been gifted with the temporary place to stay while I looked, and because of the generosity of donations received through the gofundme, I was able to do this without feeling the pressure to take the first thing that came along. After nearly two months of being displaced, I am looking forward to moving day like it’s Christmas morning.

I’ll share more about where I’m going later- but today I’m doing that uncomfortable thing of asking for help again.

When I originally shared the health diagnosis and subsequent living situation, a number of local friends responded with offers to help me pack. I started the task yesterday and will be back at the house each afternoon today, tomorrow and Wednesday trying to get it all done. If you’re in the Kenosha vicinity and have a few hours to share, as much as it makes me squirm to admit the need, I’d be grateful. Comment below or message me and I’ll send you info.

One of the biggest takeaways from this whole experience has been how not alone I am. How easy it is to offer others a hand, and how hard it’s been to allow myself to receive. It’s been a humbling awakening to understanding why I feel that way and opening my heart and mind to feeling worthy of it. I have a feeling this one thing alone will be the thing that has the most lasting impact on my life.

Thank You. 

The Wisconsin Packers (not a football team)- left to right: Cathy, Sarah, Chris, Me, and Cathleen. Not pictured: Colleen. 

On Gratitude and Grace

Image Credit: Gary Warren Niebuhr

Hello dear friends,

It has been about two weeks since I sent you the health update and admitted I needed help. The response has been more than a bit overwhelming, as you sent me messages via email, messenger, phone calls, texts, and drop in visits to my studio. Even more overwhelming, has been seeing the donations rolling in to the gofundme that my dear friend started  on my behalf, combined with all the notes of why the giver was responding. Notes from strangers, notes from friends, notes from former students and art buyers, studio neighbors and long lost acquaintances.

In the initial outpouring, when the post first went public, I was so taken aback by the things you all were saying to me, and the generosity you were showering me with, that I needed to pull inward to process it. I couldn't read a single message without bursting into tears. I spent days reading and sobbing, feeling my insides receiving it all in a shocked sort of disbelief. I confided to my friend that I was at a complete loss for words. I had no idea what to say. And in her no-nonsense sisterly way, she replied "most people just say thank you."

Thank you. These two little words sound so simple. They easily roll off our tongue to the cashier in the check out line, or after a stranger holds open the door. Such a simple gesture of gratitude we've been trained to offer from the day we first learned to talk. But in that moment all I could think, was thank you felt so inadequate. There just didn't seem to be adequate words to convey how deeply, profoundly moved I was in the receiving of so much attention and praise.

Even now, just now, typing those last words "and praise", made me squirm. So much so, that I deleted them and retyped them twice. What is it about the receiving of so many testimonies about how much my writing, teaching, friendship, or art has meant to you that has me feeling so uncomfortable? Why can't I hear such words and let them have the soft landing you intended for them to make?

Hearing my friend's words "most people just say thank you", spoken so casually that they were hardly a breath, made me sit up and take notice. Suddenly it struck me that it has nothing to do with feeling the profound gratitude that I do feel for this showering of your love, but had everything to do with feeling worthy of it.

It wasn't that the words "thank you" felt inadequate, but that I felt inadequate. It is so much easier to be on the giving side of grace then the receiving of it. In my head, I know people respond because they care. I too have donated to many gofundme campaigns and fundraisers over the years and have never felt anything buy genuine concern for the person or people in need. It is in my wiring to nurture, care for, lift up and encourage others. But I never realized how much of that wiring had gotten mixed up over the years. How much I believed that you deserved it, but I didn't.

I don't say any of this in order to have you reassure me that it's okay. I share it with you because I think many of you can relate. We have catchy little phrases that we quip during the holidays like "it's better to give than to receive" and mostly when we say these things, we mean that the warm fuzzy feelings we get by being kind to another person is in itself a gift.

But there are so many of us who use these phrases like armor without even thinking about it. We grew up never truly experiencing what it was like to expect to receive unconditionally. We approach exciting opportunities with words like "don't get your hopes up" because we don't really believe that hope is a thing that we are allowed to have for ourselves. We take in good news and sit waiting for "the other shoe to drop" because "bad luck always comes in threes."

Recently I read a post by Richard Rohr in which he explained that humans experience transformation in life in two major ways, through great trials and great love. I have done some very hard and very transformative work over the years through the experience of great trials. I've shared much of these things with all of you too, as it is so connected to the art that I make. Yet in this season, suddenly I am feeling a shift - Yes, I've had plenty of transformative experiences through great trials, now thanks to all of you, I am opening to the possibility of a transformative experience through great love.

And the greatest of these things is love.

I guess all that is left to say now, is thank you.  

With so much love and gratitude.

Crystal♥