Thursday, June 13, 2019

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 gofundmeI 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. 


Monday, May 13, 2019

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♥

Saturday, April 27, 2019

A Health Update (originally posted to my Facebook account April 26, 2019)


A recent post from my Facebook account, that I'd like to share with you here.  This one was posted April 26, 2019

I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.
I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.
The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.
For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.
Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.
There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.
Aggressive masto has an average of 4 years. 41 months actually. 41 months.
I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.
To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.
And I am also displaced. 

One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.
That is the long and the short of it. It all seems like a bad dream that I can't wake up from.

Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.
It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.
Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.
I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.
Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!
There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.
But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.
Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.
For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.
So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:
For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.
If you've ever considered signing up for a workshop, now is the time. You can find the schedule with links to register for each one on my blog at this link: https://otherpeoplesflowers.blogspot.com/p/my-workshops.html
If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link *pop up shop is now live. There are also other small to mid sized pieces listed there: https://squareup.com/store/crystal-neubauer-artist/
Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces: https://crystalneubauer.com/home.html
And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend: https://www.gofundme.com/f/support-crystal-marie-neubauer
Thank you Jana Freeman and all of you who have already come forward. And so many others. My friend Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom, NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband, Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.
How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.
“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen

I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.

I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.

The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.

For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.

Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.

There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.

Aggressive masto has an average of 4 years. 41 months actually. 41 months.

I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.

To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.

And I am also displaced.
One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.

That is the long and the short of it. It all seems like a bad dream that I can't wake up from.

Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.

It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.

Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.

I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.

Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!

There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.

But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.

Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.

For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.

So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:

For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.

If you've ever considered signing up for a workshop, now is the time. You can find the schedule with links to register for each one on my blog at this link: https://otherpeoplesflowers.blogspot.com/p/my-workshops.html

If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link. There are also other small to mid sized pieces listed there: https://squareup.com/store/crystal-neubauer-artist/

Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces: https://crystalneubauer.com/home.html

And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend: https://www.gofundme.com/f/support-crystal-marie-neubauer

Thank you Jana Freeman and all of you who have already come forward. And so many others. My friend Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom, NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband, Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.

How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.

“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen

I want to thank each and every one of you who responded to my post yesterday. The outpouring of love and support has lifted me in ways that I can't begin to explain. It is an extremely vulnerable act to admit the need for help and to show one's weaknesses in such a public way, and the decision to do so was a process.

I've promised you a health update after all the tests and lab reports came in. To share this in such a public way has also been a process to be ready.

The official diagnosis is a rare disease called Systemic Mastocytosis. In a nutshell, Systemic Mastocytosis means the mast cells in my body are abnormally increased in multiple organs including the bone marrow. It's a small couple of sentences for an illness that has had a huge impact on my quality of life. It is a sudden deeper dive into the Chronic Lyme I've been battling since my early twenties, though was only just properly diagnosed with about three years ago.

For me, the genetic lottery of chronic illness begins with a genetic mutation called the HLA_DR gene which prevents my body from properly identifying toxins and eliminating them. So I get exposed to Lyme and I can't recover from it. I get exposed to mold and the mycotoxins stay in my system wreaking havoc. I get an infection or virus of any kind and the toxic load just continues to build. When my body could not handle the assault on its system any longer the mast cells started reacting to everything.

Everything is making me sick. Not just the fore-named obvious toxins, but benign things like changes in temperature, physical labor and emotional stress, odors – be they toxic, chemical, or natural, and foods – oh my god, all the foods I can no longer eat, even simple pleasures like sitting in the sun, or taking a walk, or working late in the studio. The disease has done damage to just about every organ system. The symptoms are wide and varied.

There is no known cure or direct treatment. The disease is progressive, with each major toxic exposure or new virus I'm exposed to creating a new baseline and elevated symptoms. Mastocytosis is graded in stages, from indolent – which means your prognosis is a fairly normal, if not very high quality, life span with slow disease progression, to the other extreme of masto-leukemia with only a few months expected after diagnosis. I will be undergoing more testing to better determine where I'm at, but based on current tests and symptoms, it looks to be aggressive.

Aggressive masto has an average of 4 years. 41 months actually. 41 months.

I'll be seeing a specialist in May and I have another appointment scheduled with THE Specialist in November. One will begin scheduling tests like a bone marrow biopsy and the other specializes in mast cell diseases and is also an endocrinologist, which is important to my case as I have no thyroid.

To add to this already difficult to tell you about story, a few other things are going on in my life that I have not shared with many people. After years and much hard work on our marriage, my husband and I have separated. I won't elaborate on that much right now, other than to say, I am now living alone.

And I am also displaced.
One of the major triggers for mast cell flare ups is mold toxins and I could tell that I was having a reaction every time I was in the house that I just moved into, so I had the air tested and it came back positive for mold. There is no good way to remediate a house to make it safe enough for a masto patient to stay in that isn't expensive and time consuming. I am staying at a friends house temporarily and had to make the difficult decision in the midst of all of this to ask the landlord to break my lease and move again after only three months there.

That is the long and the short of it. It all seems like a bad dream that I can't wake up from.

Being able to make a living as an artist, selling my work, writing, and teaching workshops has been a tremendous blessing in providing an income. The teaching part has connected me to so many of you. And it has always been something that feeds my soul, the part where we connect. The parts where you light up in class. The parts where you exclaim that you got so much more than techniques from my class. The parts where we have soul deep discussions and I see you get teary eyed in your seat, and the letters and emails you write me afterwards. But it has also been costly to me physically.

It used to be that I could put everything I had into teaching a workshop and then allow myself a day or two to recover afterwards. Over the past few years it started taking longer to regain my strength, and now – it just isn't happening. I am in a rapid spiral. I am spending more and more time in bed, more and more of my life is consumed with pain, twisting muscles, and exhaustion.

Indescribable pain and exhaustion. I've known for a while that I would eventually need to make the shift from teaching in person to teaching online courses, but there never seemed to be enough time to do the work required to produce the content. I no longer have the luxury of that choice.

I am committed to finishing up my teaching schedule for 2019, and have one tentatively booked in March of 2020. I am not throwing in the towel here, but I am no longer beating myself up for not being strong enough to push through this. I've actually made it worse by denying myself in this way. I would never treat a friend the way I have treated my own body and self. Getting mad for not being able to power through. Calling myself names like lazy and unmotivated.

Dammit – when I really stopped, well when this disease stopped me, it took having my wise counselor saying to me over and over “Crystal, stop and really look at yourself. You cannot do this alone.” I kept arguing that I had no choice. I am alone. I just am!

There are full length mirrors on the closet doors here at my friends house and I stood naked in front of them one morning after that session. I could see my front and back in all it’s glory. I am not just thin, I am emaciated. My entire skeleton shows and my skin hangs in big saggy layers where muscle and fat used to be. My chest is sunk inwards and my breasts are completely empty- tiny uneven skin bags. If I were more brave I might take a picture- it is startling to see.

But I don’t need to take a picture to know the truth of what the mirror is showing me and what it means. I can't do this alone. I don't think I was ever meant to.

Those messages can get in deep – the ones that propel us to self deny. It's been a long and slow process of awakening to it for me. I know I have some gifts to offer this world. My writing, my teaching, my art, they aren't going away. But I am entering that place of acceptance, that what I thought it looked like to use them, and what I am actually capable of are not the same. I am leaning in hard here to listen and I have faith that the way will open and when it does, I will follow. But I am in the thick of it, the loosening of my grip of denial and the turning to step into what really is.

For me part of that turning looks like telling you all that I need help. I cannot do this alone. And yes, I know that God is with me. I know that faith can move mountains. I know that He heals and I can give it to Him and all of that. Yes, I do know. But I also know that He did not ever intend for me to do this without other people. Leaning on Him does not mean hiding this from you.

So if you've stuck with me and read this far, first of all thank you. Thank you for just being willing to be a witness to what I am going through. And if you are willing, able, or at all desire to help, here are some ways you might consider:

For local friends and family, I need help packing, I am looking at an apartment on Sunday, but I may have to put my things in storage if I don't find a place right away. Right now I cannot even fathom mustering enough energy to pack and move. I won't be able to begin until mid-May, but if you can spare part of your day when I do, for the first time, I won't say no to that help.

If you've ever considered signing up for a workshop, now is the time. You can find the schedule with links to register for each one on my blog at this link: https://otherpeoplesflowers.blogspot.com/p/my-workshops.html

If you are a fan of my art, you might consider purchasing – I have a series of small works that I'll begin listing over the weekend in a pop up sale online at this link. There are also other small to mid sized pieces listed there: https://squareup.com/store/crystal-neubauer-artist/

Larger works can be viewed on my website at this link and I can assist you in connecting with any of the galleries listed there if you are interested in one of these pieces: https://crystalneubauer.com/home.html

And finally, my dear friend Jana has started a gofundme to raise money to get me in the best position possible to deal with all of this. I weep even thinking about the generosity from Jana and her husband Jeff, along with those who are already contributing. As my medical and related expenses increase, along with my need to drastically change my teaching schedule to allow myself the margin to take care of myself and begin producing online courses for future income, this is beyond a godsend: https://www.gofundme.com/f/support-crystal-marie-neubauer

Thank you Jana Freeman and all of you who have already come forward. And so many others. My friend Rebecca Stahr and her husband for housing me, my beautiful family – my children who have had to rise to so many challenges in their own lives. My mom, NancyandKeith Carter who has her entire church and friends network lifting me in prayer. My dearest friends who are giving me strength to stand here and share all of this with you. Even my husband, Larry who will no longer be my husband, but remains my friend and co-doggie parent. So many people in my life already have stepped up, and spoken up, and shown me how much I am loved.

How could I ever have thought I was in this alone? Seriously I don't know why it took this to prove that I am not. I can't even wrap my head around it right now. And I thank you. I don't know what else to say now, except thank you. Thank you. With so much gratitude. Thank you.

“Our filament of light is carried in the frailest human form, until our acceptance of both storm and silence ushers us into the Fifth Season, where the glare is gone and only the color of things as they are can reach us. Perhaps this is the central work of being human. I’m not sure. I’m just inspired to lean more fully into life, to listen a bit further, to welcome the bareness of being when I stumble into it. But I believe if we can lean on each other from time to time, we can put down all we’re carrying and help ready each other for the Heavenly Pivot.” ~Mark Nepo, 7000 Ways To Listen





Tough As A Mother (post from my facebook account April 25, 2019)


A recent post from my Facebook account, that I'd like to share with you here. I'll be adding a few more throughout the day. This one was posted April 25, 2019

I bought this shirt because it spoke to me about the trials I've endured in my life and the circumstances I'm currently going through. I took this picture with the thought of posting it to assure you all that my outward circumstances won't defeat me. That on the outside I may be weak, but on the inside I am strong. I am a fighter. I wanted to tell you that so you wouldn't be concerned about me. Because I've been wired to believe I'm responsible for how everyone else is feeling, and my innate thinking pattern goes along the lines of believing it is unseemly to call attention to my own needs. That having a need that I can't manage behind the scenes on my own makes me weak, and reads as playing the victim. 

Can any of you relate?

See, I told you all last month that I've rapidly lost a great deal of weight and that I'm working with my doctor to determine the cause. And then this past week, I updated my profile picture to one taken on Easter Sunday with my beautiful granddaughter, who is among the biggest joys of my life, because it made me happy. And then I heard from many of you concerned at the dramatic change in my appearance, and even concerned that I had allowed myself to be seen like this. 

So I thought I needed to reassure you all that everything is going to be okay. Don't be alarmed. Don't worry about me. Look, I'm tough! 

But the truth is, that even now, even yet today, I am learning that what makes us tough isn't hiding ourselves from other people. It isn't the ability to go it alone and not be a burden on anyone else ever. What actually makes us tough is allowing ourselves to be seen in the hard places. In the middle of the storms of life. What makes us strong isn't our determination to power through our circumstances so that no one else is inconvenienced or upset. What actually makes us tough is the ability to say I need you. In our most vulnerable, exposed and raw places. To allow ourselves to stay connected to each other, rather than to close up and wall off to protect ourselves from exposure and the judgement or discomfort of others. 

A health update is coming, but today I am sharing this picture and practicing saying I need you, and I am grateful that you are there.