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.

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. — 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.

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.

Thoughts on a Decade.

How embracing fear has helped me face my fear

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