Thoughts on a Decade.

I have been giving a lot of thought to an end of the year blog, but much like last year, the year feels too full and not fully digested to write about in a blog. I can’t find the right words, because there are too many. Monday we had our first breathing episode since being home from the hospital. A lung episode for Steve is when his oxygen saturation goes down and peek pressures go up. Sure lung episodes are back and that is something that requires attention and full awareness of what it means and needs from me.  However, there are no fevers, there isn’t copious amounts of stuff in his lungs drowning him, the episode was resolved in less than 5 minutes which hasn’t happened in months. He only required a temporary bump of oxygen and was actually able to be weaned back down. He only required to be bagged once.

As I was actively naming the goods out loud so Steve and I could both ground out of panic, I realized I don’t need to write anything about 2019 in the form of a blog, but I do owe this past decade some words.

I know we haven’t been in this a full decade but meeting Steve, him being diagnosed, and us getting married in 2011 means most of my decade has been in this ALS journey.  

Photo Raymond Adams

Being 35 this past decade is one that naturally comes with growth explosions and many life changes, but ALS was definitely not on the typical list.  As much as I boldly hashtag and say Fuck ALS on a regular basis, I’m also aware enough to see how it has come with gifts.  Without ALS I would never know how strong I am. I would never know just how much love I am capable of holding. I would never know just how much I can do.

Steve and I would have loved to see how our life would have turned out without ALS, but we both are also very aware it may not have been us together without ALS teaching us that life was too short to throw love away over the hard stuff that ultimately has helped us grow.  We would not have learned so much about ourselves, which has been mirrored to one another. We would not have this understanding that everyday is a gift, and definitely not lived as full of lives as we have the past 8.5 years. 

The knowledge I have gained the past decade feel so invaluable to me, I feel protective over sharing them all yet, because many lessons are still percolating.  However, there are 10 clear ones that jump out at me that well fit the perfect little decade blog mold, ya know.

One. Suppressed feelings and emotions are going to come out when the pressure is on.  So naturally if you live in a high pressure situation, you will face shadows you didn’t even know you had.  Something studying herbalism, and more specifically alchemical herbalism taught me was that the more you suppress a symptom (feeling) the more the root problem festers and gets deeper. 

Written by me December 2016 Pain is real and not to be ignored.  Pain doesn’t just hurt the body it hurts the soul; but still it must be felt. No one reminds me of how important it is to sit with life’s pain, to feel life in all it’s realness than Steve has. He’s also shown me you get the choice on how to respond to the pain.  You can let it harden you, or open you. To feel this kind of pain brings a very beautiful and bright light at times, if you choose to get through the pain.  

Two. Your emotions and feelings are your teachers.  The only way to learn the lesson is to feel them. This was a hard lesson for me.  Because my name is Hope and I am meant to be the light. It’s something that’s been made clear by everyone I’ve ever met.  I’m not supposed to be full of rage or sadness. So I wouldn’t feel them. Not only making them go even deeper into my being, thus making them hard to process or understand them, but I was never learning my lessons.  I would cycle over and over again, not understanding why I was repeating the same patterns and behaviors, until little bursts of hard earned epiphany's came, and I was able to see how an experience when I was 5 years old taught me to distract or avoid all the yucky. Once I was able to see that since the age of 5 I’ve been mastering the art of avoiding my feelings, it was no wonder it took me so long to unpack it. Feeling my feelings often overwhelmed me this past decade, but finally feeling them also healed me.

Written by me in September 2017, When you live in hope, even in the dark, you know it won’t last forever. So you process and expand and when you return to the light, the hope grows.

Three. Just when you start to feel your feelings, you think you know what they are about.  You think, “I’m mad because you’re not respecting my boundaries, and that makes me full of rage.”  When yes anger is a message to tell you where you need to work, but it can also have a much deeper meaning.  Usually the deeper ones are when your anger just sort of spills out here and there in volcanic explosions on ones you love, where you’re later coming back wondering why you lost it that much over whatever you thought made you mad.  Through years of this process of finally feeling my anger, I was able to see a root, but more importantly I was able to see most of my anger isn’t actual anger. Most of it is not knowing what to do with all this fear. How can my body possibly handle one more minute of being so anxious about whatever current situation we are in? I know, get angry. 

Four. Forgiving yourself is more important than forgiving others.  This isn’t talked about often. We hear in bible verses and endless quotes about forgiving others gives us freedom, and healing.  It wasn’t until I stumbled upon Brene’ Brown and her work around shame that I realized how my self hatred was why I couldn’t move past certain cycles.  I had forgiven others far easier than I could myself. I held myself to a different standard than other people, and it took some difficult years of work to finally heal my shame.  Still to this day when I have an outburst, I have to work hard not to hate myself. It would be cute if I could provide a secret remedy for how I worked through this, but it was messy and took lots of trial and error.  At the end of the day I realized that all this shame and self loathing was only keeping me stuck in the behavior I wanted so desperately to get rid of. It took journals full of self observation, as to how I spoke to myself, to really be able to see my patterns and create new ones.  It’s not a once and done kind of thing. It still requires constant work from me. However, no longer allowing my life to be defined by my shadows has lifted a dark cloud off of me. As they say, you aren’t the worst thing you’ve done.

Raymond Adams photo

Written December 2017

I’m woven soft and strong.

My delicate pieces tightly held by my courage and hope.

All the messy pieces of me coming together to form art.

Art that displays all sides of life.

Hard times opening my heart to feel the beauty that lies in the softness. 

Feeling okay with being soft and hard

. With each loose end connecting to another forming cycles that loop me.

Life is woven to support me. 

Five. There is always going to be someone who questions your life.  You must learn to not allow them to sway you. In the beginning of the decade people had placed me on a pedestal.  I rather liked the attention I was getting from it, even though I knew full well that one day I would be removed. No one belongs on a pedestal and my big fall was in an act of doing something I 100% was okay with.  The reactions from a select few people who were following us really shook me. I was a bit broken from my fall from the pedestal and it took a few more ruffled feathers to help me understand, the peace I feel in being true to me even if others don’t agree far outweighs everyone's approval. This message also applies to the ever growing list of doctors who have questioned Steve’s choice to live at nearly every stage of progression.   I can only hope each of those doctors see Steve still living a full life despite how far this ALS has gone, learns that they are not God and also never have the right to tell patients what quality of life is acceptable for them. To quote Steve, “ALS is awful but my life isn’t.” (click)

Both photos Raymond Adams Left 2013. Right 2015.

Times doctors told us Steve wasn’t going to make it, or questioned his quality of life. (Not a complete list because ,well, caregiver brain.

When his heart stopped and he needed an emergency tracheotomy early 2013, When Steve got to be 67 pounds due to gastroparesis late 2013. An ENT who looked at Steve’s trache stoma that had been stretchered in 2016, and said this wouldn’t end well. A kidney doctor told us he was in kidney failure. 2019. Lung repeatedly from 205 to current. I mean Repeatedly.

Six. Know thyself. There should be classes taught in self discovery.  There’s a lot to our inner beings that we aren’t aware of, because we are so distracted by day to day life.  Being someone who checked out as a survival turned habit, knowing myself wasn’t at the top of my list. The act of gaining knowledge of yourself requires a true hard look into your soul. You have to get to know your triggers and shadows.  The process isn’t particularly comforting to start, but about half way in you will be handed little clumps of light that you didn’t know you held. Self discovery can be passed off as a selfish thing. How could you want to spend hours a day studying yourself? However, it’s been my biggest tool. To know what triggers me, what moon sign bothers me, what season I thrive in, I even went as far to know my dosha (in Ayurveda Vata), my astrology birth chart (hello FIRE), my alchemical make up (Floating in space, Air).  I discovered pieces of me that I didn’t like, hence the need to learn self forgiveness, but more importantly I discovered a depth I didn’t know I had. I discovered my strength, my craft, my power. I discovered an ongoing relationship with self observation that would help me continue to understand my ebs and flows. It’s been perhaps the most important schooling I’ve done. The school of self. 

Seven. Don’t get too focused on “fixing yourself” and personal growth to miss how you have grown.  Don’t get too focused on what you want to fix that you miss what you have changed. Don’t get too focused on what you don’t have that you miss what you do have.

Eight. This is the most important.  If you can breathe, say thank you.  Steve’s lungs have shown me truly just how much we take an act we rarely do consciously for granted.  Steve has lived for over 3 years with a collapsed lung that has been constantly infected. While he has thankfully outlived doctors unwanted prognoses, they have been right in the challenge increasing as time goes on.  

Nine. Duality.  By nature, I am a tad airy fairy, and have slightly denied or avoided negatives or darkness.  I didn’t want to see it existed, until one day it all came piling on top of me, that I was absolutely buried in darkness.  I couldn’t see out from it and I really believe my raging fire returned me to the light. One of the more valuable lessons I’ve learned is that it is important to acknowledge the darkness, the hard times, the struggle.  It’s equally important to seek the good that is simultaneously existing. In this simple understanding I have been able to see life in an entirely different way. I understand the “bad” for what it is and have been able to learn from these, and if I don’t naturally see the “good” I seek it, because I know it’s there.  Sometimes you just need to remind yourself to see it.

A piece of writing I wrote about this in Summer 2017.

Summer in the south is sunshine, pop up rain storms, jungely greens, flower blooms, medicine, cicada songs, bird harmonies, frogs base, and the crickets on the drums. It’s full of blue sky’s, fluffy clouds, and rolling thunder. It’s full of long days spent drinking tea with herbs from the garden brewed in the sun, and pulling a cucumber from the garden for lunch. It’s butterflies & bees & kids playing in the background. It’s deer visits and the sightings of springs newest babies standing strong on their own two feet. It’s ice cream trucks singing with the sunset. 

It’s also fly infestations, bee swarms, opportunistic ants finding that one mess you left in the kitchen, dried crape myrtle droppings covering all the floors, 19,986 mosquito bites a day, animals crawling in your chimney, maggots growing in your ground, slugs and all the bugs eating your plants, mildew and fungus and mold oh my, no food outside, no painting in the hot shed, dehydration, tornadoes, heat exhaustion.

I suppose I could pretend none of that later stuff exists, and not acknowledge the truth in front of me. I could just as easily only focus on the muggy buggy nuisances and miss out on all the gifts nature brings in the summer. Duality is life. Duality is perfectly demonstrated in a southern summer. 

Ten. Your mind is the most powerful tool you possess. This isn’t some new aged speech that tells you mantras will cure diseases, because we have tried that.  This is however, important to note that while it may not cure a disease because that disease was created by exposure to chemicals, traumatic injuries, nerve surgery, beatings with baseball bats (yes I’m talking Steve), but we have seen how his mind can help him out of situations doctors claim to be hopeless. Each time Steve would talk to his body, and say okay kidney I need you to heal, okay lung I need you to work, okay eyes I need you to open, he’s been able to come back from some very near death experiences. His mind is one of the most powerful I’ve come across. He said it’s all the stillness in his body. I can see that. He helped me start to use my mind for me and not against me. My mind was acting like the doctors telling Steve he didn’t have a chance, in how I treated myself. Paying attention to my thoughts, has truly been a healing experience for me. Once you start observing your mind, you can then slowly gain more and more power over it. Thank you Steve.

I have plenty of hopes and intentions for 2020 and the new decade but most of them will stay between me, my journal, and God.  I do know one thing this past decade taught me was at the end of each day I want to feel like I showed up and did the best I could that day.  I want to feel like I’m being a Good (to my standards honey) person. It means more to me than how many words I write, how much art I make, or how many projects I crush.  I will continue my daily routine of taking inventory of my days. What I’m grateful for in that day, and what I noticed I need to work on. I will continue to adjust as that is what my life has required of me all of my decades.  I will hopefully grow in grace and peace as this decade will be spent continuing the growth of this inner peace. 

I also know the last decade I was learning and embracing dreaming, intention setting, and planning; so I can now hope this next decade is action, implementing, and creating all these ideas I’ve watched grow in my mind.

Meeting Steve, and going all in on this journey with him has shown me possibilities for my life I never in my wildest dreams would have imagined for myself.  I will spend the rest of my life trying to piece together the words to explain how much this journey has changed me and shaped me into a better me every single day.  It feels like a good start to say that it’s opened me to a world of endless possibilities.  I couldn’t be more grateful to still have Steve to walk into this next decade, and of course I wish he to be there for the whole thing; I’ll spend my time enjoying what gift everyday that we do get is. 

Thank you all for being there for us over the past decade, and for those who have stuck with us going into 2020, here’s hoping this decade finally brings a cure to ALS (& beyond). It’s time. 

Photo Raymond Adams

You fix the environment in which it grows, not the flower.

Care giving is my job, everything else is extra.

I repeat this to myself whenever I have moments of feeling like Steve is interrupting something I’m working on. Although I don’t get paid, I choose/love to take care of Steve, and I don’t answer to anyone, my brain sometimes needs to see it this way. Something you may not understand about me is that I need some structure to function. I’m a totally free flowing attention person. I was distracted 10 times just writing this sentence alone. If I allowed my attention to go to every place it wanted I would never get anything done.

In order to accomplish anything I want to, it requires enormous amounts of energy to focus and complete; so I have to frame things in terms of a list of to do’s, and hold myself accountable. Other wise I won’t do one thing but wander aimlessly all day. Trust me I allow my fair share of that in my life, if you follow me closely I don’t have to tell you that.

So whenever I am finally sitting down to write or make art and Steve needs something I need to remind myself Steve is the priority. The words, the art, they are important to me, but taking care of Steve is my number one focus.

If you’re a caregiver of any kind I know you understand the effort it takes to make sure you are filling your soul in ways that help you be able to show up for the other person. My filling up requires equal amounts of play and “working on goals” time. It took me a long time to understand that.

I found myself burnt out and angry all the time. I couldn’t find any direction, and felt like all I was, was a caregiver. Which, isn’t necessarily wrong, but in those moments I felt like it was. I wanted to do more, but couldn’t find the energy. I continued to feel like all I was giving was to Steve, and nothing to myself. So I tried to rest. You know, chose to do nothing, and enjoy it. Well, I did plenty of resting, plenty of aimless days where I dilly-dallied and didn’t focus on a list or on doing much.

I somehow felt worse. I felt more tired and burnt out doing nothing, than I did before. So I started to really soul search of what I actually needed to feel more fulfilled. It wasn’t more rest and less structure. It was more structure and more discipline. It was so counterintuative to me. I’ve always heard when feeling fatigued you rest.

I needed the opposite of rest. I needed to be engaging myself. My body, my brain, my creativity, my writing, my art, my….

So I set out to find what works. It wasn’t easy because I would find a flow and a set back with Steve would happen. I would struggle with feeling like the set back was because I was working on other things. Then once I got over that limiting thought, that’s just a lie, I struggled with getting back on task after a set back. I then struggled with getting irritated at Steve for interrupting me. This isn’t the first time we’ve been on that merry-go-round; but each trip around I catch myself a little quicker.

Steve and I have been instrumental in facing stuff in ourselves we never wanted to. I have the ability to talk about mine, more so than Steve. Recently working on the book, I asked him, “How do you want me to share some of the chaos we both put on one another?”, and he said, “How you always do, be honest, and leave out no details.”

It’s easy to try on all these ways you hear about healing and feel like you’re hopeless because it doesn’t work. We forget sometimes that all that is handed to us isn’t for us. The needing to rest isn’t for someone who prioritizes sleep like a boss already. Some of us need to move more, do more. Some (maybe everyone) need to play more. Just know if something you see working for seemingly everyone else isn’t for you, you’re not the problem.

“If a flower doesn’t boom you fix the environment in which it grows, not the flower.” Alexander Den Heijer

I wasn’t growing, because my soil was too compacted. It needed some compost and mulch. :)

Photo: Jeremy Brown @nonchalantcreative

When you see me sharing my art, words, or photos it’s safe to say, that’s when I’m being not just the best caregiver to Steve I can be, but the best self caregiver also.

When life reminds you

It feels fitting to find my way back to blogging when we are on a good streak. It was a year ago earlier this month that Steve was told this lung infection (ESBL ecoli) was not going to get any better. We took the news hard because we had seen how resistant to antibiotics Steve was and just how sick this infection was making him.

The past year started with a dark cloud. We were sad, and really Steve was trying to prepare me for him dying. He felt the infection in his lung and he was terrified of what it could do. Steve required antibiotics every 3 weeks on average this past year. Where we were grateful the antibiotics would provide some relief from his symptoms, we also were aware that this kind of antibiotic use, when Steve’s already reached antibiotic resistance, had only one outcome.

This has weighed on us, and it’s been reminded to us upon every single hospital visit. The concerned discussions of what bugs and sensitivities are growing in cultures. The comments about us, “Being back so soon.” It has been hard to dig our way out of the fear pit that was sucking us in.

Which is why our good streak means so much. Because it means so much I waited to talk about it. I’ve had this thing where talking about things on the internet sometimes comes back to bite me, and it feels like a jinx. If you haven’t figured it out I am off the charts in superstition.

However, we reached a very big goal, while also being realistic that we could end up in the hospital any day; that is our reality. We wanted to feel the celebration and let go some of the seriousness and fear. I wanted to share some of the things we are doing different in hopes that maybe it can help anyone in this position.

Marlowe laying with Steve while he turns. :)

To begin with Steve is turning more frequently. While turned I have been cupping his back and his lungs will dump sputum and clear. This helps get stuff that is out of reach from the suction catheters, and that he can’t cough up. It’s the most effective lung thing we have tried (front lung cupping and lung massage being two others we tried) Turning also is helping his butt (mostly) heal which is one less source of infection.

Being used to turning so many days has helped remove some of the drama around moving his bowels, so he hasn’t refused any teas since being home in June. Fueled by his teetering hemoglobin numbers and his desire to see how long he could go without antibiotics. The herbs we give him are Nettles and Chickweed to help him build hemoglobin, Marshmallow to help with his constant UTI’s, Mullien as a lung tonic, and one of our favorite adaptogens around Tulsi. Please note if you do try to take any herbs I ever share, please do your research. These are obviously gentle but I remember using turmeric on Steve, because everyone throws it’s safeness around and his hemoglobin dropping significantly because of it. We have to do our own research, and use our own judgement instead of accepting all that is handed to us.

I also think Steve seeing that he doesn’t have to be on antibiotics every three weeks has helped boost his self esteem. One month and two weeks may not seem like a lot to those who don’t have chronic super bugs, but for Steve it’s the longest he’s gone in a year. He needed to be reminded of his bodies ability to heal.

We did have one close call episode that wasn’t fever related. I’ve been tracking his daily fevers and thankfully they have been his low grade ones that are not reason for alarm. Just as a side note, we have a set fever that we take Steve in for, and thankfully our infectious disease doctor removed the guessing in this process.

So our scary day. We turned Steve, like we would any other day, and as I was cleaning him and doing wound care I asked to massage his lungs with this lung oil I make him. We’ve used it 100 times before, without it working THIS well. So after being turned, he had dumped some sputum in his tubing, and I wanted to get clean tubing on him.

It was a perfect storm. The oil broke up lots of junk wanting to come out, and just as I changed the tubing Steve felt a plug, began to panic, and as he was trying to breath, he was missing the vents breaths. With beeping machines and looking into that face I’ve seen too many times, I realized he was not okay and if you want technical terms he was coding. I grabbed the pulse ox to see what his O2 was reading. When I saw 80, I grabbed an oxygen tank and gave him 8 liters and grabbed the ambu bag. I immediately started bagging him. I didn’t realize the plug was there at this time, I was just thinking the tubing was bad and I planned to bag him until I got his numbers up and then change the tubing.

It wasn’t until the 4th pump of the bag that I felt the plug break loose and his numbers started to go up. I continued to use the bag until he was at a number we felt comfortable with (95) and then switched back to the vent to do a TON of productive suctioning. The whole experience lasted maybe 10 minutes but it felt like it had been hours. Obviously traumatized but also very grateful, because it could have gone very wrong. I almost called 911, but really felt I didn’t have the time, and that I needed to act. Plus my phone was in the other room (rookie mistake). Also note I was doing this one alone.

Even though the event was terrifying after Steve was stable, although he was anxious and I was shaken, we both felt a bit empowered. It had been some times since I felt like I could really help Steve with where we are, and between this length of time off antibiotics and my quick response to this event I felt like I really do have this.

His lungs have lots of stuff in them, and his urine isn’t 100%; we know this. However, when you’re in this situation you have to celebrate good even with the bad existing. I do feel like a lot in life is this way. We cannot forget to celebrate when life gives you gifts.

There’s so much talk about good and bad not actually existing, or, what is good or bad? While, I do see there lies some truth in there, I experience the truths of duality every single day. We know Steve’s not 100% clear of these infections but we also know right now they aren’t causing us trouble.

Thankfully although we are aware of the possibilities of a flare up we can appreciate this little streak we are having. We also know what we are doing is working, and plan to keep doing it! :)

Will we be upset if a hospital visit comes? Yes. Only because we ALWAYS are. However, will we have the perspective that we could make it even longer next time? Yes and that is gold. Life has reminded us that Steve can heal, and I can help him, and I can be what he needs.

I try to be so perfect and get really upset when I’m mean. I try to talk about my meanness not in a shaming way, but in one where I admit I’m addicted to my meanness. My anger became what fueled my sleepless, anxious, over stressed body. When I have a moment where I loose my cool, I immediately feel like I can’t be what Steve needs. However, life reminded me, I can. This eclipse and retrograde month may have been intense, but sometimes the most profound understanding comes from such heightened times.

Knowing I can do what needs done, alleviates the constant worry in the back of my mind. With less worry comes less reacting. I’m grateful that Steve is willing to continue to put the work it takes to battle these complications. I find it awe inspiring the things he goes through to choose life. I’m thankful he’s understanding of my momentary meltdowns; and just as he’s never given up on life, he’s never given up on me.

To all my caregivers out there, remember you are doing amazing. You are showing up even when life is really hard. If life hasn’t given you a reminder in a while of how capable you are, then let me remind you. You’re a gift to this world, and you can do hard things.

Updates all around. :)

Getting back into writing after several months off feels similar to trying to squeeze into my skinny jeans. I remember the jeans fitting comfortably at some point but now I shimmy, and pull, and practically have to grease me up to get them on. My brain feels like it needs a little oil to get firing like it once did too.

I suppose many wonder why, if writing is my biggest tool to process life, I haven’t been. I supposed it’s because I haven’t been doing much extra. Being sole caregiver 24/7 for so many years, and the heaviness of the information we’ve been told this year (in terms of Steve’s lung infection not responding to antibiotics) just had me weighed down. It felt like I couldn’t do anything extra but take care of Steve.

All the resting I’ve been up to, plus the change of the seasons, have me finally feeling like a functioning human. Here I sit, after clearing stacks of papers and to do lists undone off my desk, dusting off the cobwebs,watching the rain dance off changing leaves; trying to put months worth of words into a box. I think it is equal to doing the squat move many of us do to stretch out those jeans.

So welcome as I stretch. :)

First thing let’s chat about Steve. He’s currently not on antibiotics. Even though he has low grade fevers off and on, we aren’t rushing to get him back on antibiotics. Constant antibiotic use has done a number on his stomach. We upped our probiotic game, started back our elderberry, and are continuing to build him up with what little teas and foods he can tolerate. Thankfully his stomach issues are trending back to his norm, and we just continue to monitor and take whatever comes. It’s hard to give more of an update when we are hanging out in the unknown, but just know we are doing the work necessary to be able to survive that type of survival we constantly live in.

The work I speak of is mostly recognizing our needs. If I can’t conquer that list of to do’s because it would benefit my health to nap or rest instead then that’s what I’ll do. No shame, no guilt. Because survival requires you to show up for yourself. Read that as many times as you may need to hear it. There’s so many of us who believe survival means being on a constant grind. Sometimes it means slowing way down. Letting go of anything you can.

Tis the season after all. Fall demonstrates beautifully how letting go is part of the cycle of life. It allows space for you to flourish.

Whenever Steve got the news that his infections could eventually take over his body, he became very concerned about me. He’s been my purpose for so many years, and he’s worried about me having to start over while exhausted and in debt. I won’t lie some days I’m a little worried about it too. Thankfully life comes along and reminds me that I’m blessed and provided for and will be okay to snap me out of worry! It was important to Steve that I transition my website to this venture I am beginning.

When I first started herbal classes (which I just turned my last assignment in for) I bought the domain Hope from Earth. For two years I would dream with Steve about what the space could be, but with his push, and things lining up for me, transitioning now was perfect timing.

It’s been important to me for years to transition my art to a more sustainable medium. It’s weighed heavily on me, the waste I was creating just to fulfill an urge to create art. I worked hard to get my mediums to match my values so that it could fit into the website change. Photography runs in my family, and it’s always been a dream of mine (and many generations in my family in fact) to pursue nature photography. All art I sell the next few months will be to save for a camera, and I’ll finally have high enough resolution photos to sell prints that people have been asking me to. My photos have all been with my phone which sure look pretty on screen but printed not as much. Now that I’m done with classes, I plan to spend the next year really mastering my formulas and craft with medicine making. I hope my garden will provide the bulk of my needs this year, and what doesn’t will pay for itself through sales.

There’s something about actually having a plan. Steve and I stopped making plans about 4 years into life with ALS. We knew that each day brought something unexpected we couldn’t plan for, and we had to release the attachment to plans. So if we would ask anyone if they wanted to do something, we would always warn them things may change. Maybe it was out of kindness seeing how broken plans had dampened our spirits, or maybe it was thinking we lost so many friends further into diagnosis because of canceled plans. I had to really get over the hesitation to plan something. Let go of the fear attached with a plan. Truth is planning is all fine and well, but being open to adjust and adapt as life needs you to is also needed. I never had to let go of plans entirely, but we did for a long time. So I have plans while I also have lots of experience in adjusting as life requires. Maybe the most important thing I’ve learned to date is to adapt.

With it being THANKSvember, a month where I like to offer gratitude everyday (a practice an undergrad professor inspired me to start many years ago) I want to end with some gratitude. I’m thankful for Steve’s choice to continue to face all that ALS brings to the table, I’m thankful that even though things keep coming we are able to keep adjusting and moving forward. I’m thankful for all of you for supporting us every step of this journey. I’m thankful for the support and encouragement to pursue this website change, and for the feedback I have received thus far. I’m thankful for the many gifts fall brings, and all of you who will sell me out of my art.

That’s a hint, there is many for you to choose from right now. :)

Hope From Earth Launch Giveaway!

In celebration of the launch of my new website and rebrand @HopeFromEarth and HopeFromEarth.com, I’m giving away a prize package of one Nature Weaving (using found and organic materials) and one Nature Painting (using plant based pigments) both created by me!

HOW TO ENTER:

1) Follow me on Instagram over at @HopeFromEarth.

2) Tag 5-10 of your friends in my official giveaway post (kindly do not tag big accounts you don’t personally know) with each tag in a separate comment.

3) That’s it! Winner will be selected at random from the Giveaway Post Comments. Each friend tag comment counts as ONE entry.

My biggest teacher is a Rat. A literal rat.

Most people want to proclaim their spirit animals as something cool, like a hawk. Which if you follow me closely you know, the hawk is one of my guides, but we can’t forget the less cool Rat (and mouse).

I was born in the year of the rat, and have lived among rats and mice most of my life. Honestly more people do than they will admit. When the animals around me do something strange that make me pay attention to them, I usually refer to my favorite book, “Animal Speaks” by Ted Andrews. Just reading a few words about why an animal went out of it’s way to communicate with me, helps remind me that I’m not wandering lost in the world, I’m in fact being guided.

Rats are around to make me pay attention to how I deal with the “pests” in my life, which has plenty of room for improvement. It also may correlate with the many houses and apartments I’ve lived in surrounded by trees. I’m grateful for all the roofs that have sheltered me, even if they’ve included rats. Because they are teaching me, so much. So yeah, my little secret is out. While I’m confessing let me say one big one, I sometimes make Steve feel like a pest. Yes, gasp, and go on into judgement….or…

Why do we keep secrets? Mostly it’s for fear of how someone will react. For me I’m already very judged as a caregiver. Messages like, “Your husband is so sick, it must be your fault, you’re caring for him.” In fact I have had handfuls of nurses and doctors say these words to me, “If this gets infected, it’s on you.” How could I not feel some sense of ridiculous responsibility for Steve’s infections? I mean what bullshit to put on a caregiver. Let’s talk infection reality with Steve for a minute.

Steve was born premature and with a slew of health problems, he was an athlete who injured himself frequently requiring surgeries, and has lived with frequent infections even before ALS. Then you add the permanent pieces (trach, folley catheter, feeding tube) all a constant source for infections. Further more you add his anemia of chronic disease, and gastroparesis leading him to being only fed via IV food; which keeps him alive but only goes so far in terms of sustaining him.

Here I am explaining myself again. Instead of attaching some bullshit that I shouldn’t be doing that, i’ll just acknowledge that yes, I’m justifying myself. Because here’s what I’ve come to learn in my 34 years. We have to stop the judgment. I mean towards others of course, but recently I learned it’s towards ourselves that’s most important. My latest mantra has been, “Be so busy learning not to judge yourself, that you don’t have time to judge others.”

It’s interesting to put your life out there. Some people only see the inspired writings and pretty pictures and have put me on a pedestal, which I don’t belong there. Side note: No one does. I just like to remind those that there are days in which I can’t put one foot in front of the other, and the only thing I can muster to do is take care of Steve. So often I feel lost, and maybe it’s because I’m lost in Steve and caring for him. However, I realized recently I’m done trying to live my life in a way dictated by what will keep me from being judged by others. Instead I want to see where I’m judging others, which is a very large clue into where I’m judging myself. It should go without saying, but let me say it, STEVE IS NOT A PEST. Not one bit, and me treating him like one is not acceptable, but also let me add, people judging me on the internet isn’t the pest either. It’s me.

I can’t understand why we are conditioned to strive for perfection instead of being taught to be human. Being self aware in any way requires a certain level of acceptance and heaps of self love. Accepting yourself does not mean you excuse any bad behavior. That’s a dangerous lie we are told in the world of lies we are submerged in. Accepting yourself means you forgive yourself. It means not spending any of your energy self loathing when you make a mistake, and instead use the energy to grow and learn from it. Failures are nothing but teachable moments. Stepping stones on the path.

So as I found myself setting traps and catching the mice and rats, and crying my way through disposing of the animals, I was missing the ways I was trapping myself.

As I would loose my shit, screaming, “I’m sorry,” as I would smash the animal with a brick to kill it, because the trap didn’t, I was missing the lesson.

As I would sob for acceptable (to me) amounts of time to Steve about how my life isn’t worth more than rats, I would hear him say, “Mine is.” Which of course would help me cowgirl up, handle business, pour some literal bleach on it, and move on. I was missing how little I was valuing myself.

However, I was too in my “victim” of these rats not leaving us alone and our house having all of the problems an old house in the woods does, to fully see how much I was being taught. Boundaries aren’t to be shamed. Killing an animal who has taken residence in my house doesn’t make me awful (again I’m typing these words for me). Healthy boundaries aren’t just saying no when you don’t want to do something, it’s also not allowing anything potentially toxic in your space.

For the record the animals have nothing to do with Steve’s infections, and they have only come INSIDE the house when we are in the hospital because I leave our back door open for the dogs. They spend time in our attic, garage, and my shed; and I will forever be killing these poor animals who live among so many people, just trying to hide away from their predators and have a dry place to keep their 4 litters of babies a year. Seriously nature makes lots of rats and mice because they are major prey. Important to say, No I will not use rat poisoning, and risk poisoning my dogs who have caught the mice, the hawks who hunt them, the owls and eagles that make appearances, the neighborhood cats, and snakes. Yep, you’re damn right I’ve called in all the prey, and they show up for me non stop. THANK YOU animal friends. Also, our house has never been so clean. I clean non stop because of them. They taught me cleanliness in an act of self defense. I will catch them as they come, and carry on with this cycle, as we live in an old house in the woods. Because it’s what is best for me and Steve, and I no longer accept anyone’s shame about it, mostly my own.

There’s something liberating in facing your truths. It’s an act of taking your power back.

So I wanted to share my “dirty little secrets”, mainly because sharing my story heals me. Somehow even in all my mess, I am told often that it helps heal others too. It’s a reminder that nothing we go through is to hurt us, it’s to create us into a better version of ourselves than we were the day before, if we let it. If we are paying attention.

PS don’t send your animal professionals here, we’ve paid too much to too many people, it’s clear I have to handle this one on my own.