Answering the call from Mineral Bluff

Hello from my new home in the Georgia mountains! I have been wanting to write this blog since moving here, but I’ve been a bit hyper focused on unpacking, ripping up carpet (if you know me you knew I’d change something here), decorating, getting the lay of the land, sorting out the challenges of mountain living .

I remember feeling like the universe was unfolding a pre-made plan for me when I met Steve. The feeling of synchronicity in how our worlds collided again simply because of people who really shouldn’t have been in our lives (ie bad influences). That feeling of knowing I was supposed to meet the person in front of me right when I did, and how I knew he was going to be a big part of my life and change me.

I feel this same feeling about this house. When I was on my river trip, Mineral Bluff put it’s hooks in me, and I felt when I got home like I left a huge part of my soul there. When my friend Erica and I both started discussions about buying a house together, I really was just thankful for someone who was willing to take a risk on me and help make this transition a positive one that I had no real attachment to the outcome of where we would move.

We talked at length about options, joined Zillow to share our liked houses, discussed our realistic budgets and how if we did more than a set number for my sake 50/50 would have to change, and our willingness to compromise. We had this dream property in mind, and in all the places we went to see in person it just so happened that Mineral Bluff was the perfect space. It was in the budget, it had the land, the nature, the views, and well it was as if my soul was answering a call to return to Mineral Bluff. The synchronicity of it is that this was a house my roommate had picked out and fell in love with online, and that I was being called to live here so powerfully that it spoke to her too!

Leaving the house where Steve and I spent our entire relationship terrified me. When we got our first offer for someone to buy it, it was on the exact day 9 years later that I had moved in with Steve. I read a Facebook status that said, “All moved in with Steve Dezember II I hope he knows what he’s in for ;)” minutes before his parents texted me that they had a good offer on the house.

Now that I am in the position to share the details of this place, I would like to thank my roommate for being willing to pay extra to make this dream come true for both of us, I would like to thank Steve’s parents for giving me some of the money they made from the Johns Creek house. The house was sold as a fixer upper, as it was out of my capabilities to maintain the house that had already had problems while taking care of Steve full time. As sad as I was to let go of this house, I did feel a sense of relief to not have to look at the mountain of problems as well as a sense of happiness that the house would get the care it honestly deserved the past 9 years.

I’m thankful to everyone who bought my art and belongings I was desperately trying to sell to come up with our deposit for this house, I’m thankful for the life insurance policy that Steve’s old job had without our knowledge so I could have some kind of foundation to start to build this next step. I have honestly felt this strange mix of gratefulness and guilt for how provided for I’ve been my whole life, but I thankfully have the hindsight to know this is for a reason.

I feel it’s preparing me for what big next thing that is in store for me. Although, I have a million ideas and dreams I won’t even pretend I have it all sorted out. Honestly, life has brought me to so many beautifully challenging and rewarding places, that I have learned to trust the unfolding of things. What a beautiful gift walking through my life has given me, that perception of trusting the process and steady walking one foot in front of the other.

Since being in this beautiful place, I have been in awe of the views. Our property alone is enough to keep me enamored for all of my days but in our curiosity of the area we are being pulled to the stunning scenery all around us like magnets. Honestly you can’t even drive the grocery store without seeing something breathtaking. I have to constantly remind myself, that I get to live here. It doesn’t feel real.

Aside from my fears of if I could pull this all off, my biggest anxiety about moving was not feeling Steve anymore. I thought if I left the space we shared most of our time, he wouldn’t still be as present. I’m so relieved and overwhelmed with how much I do feel him here. When I see a stunning view I know he’s smiling at my excitement, I know he’s as giddy as I am as I obsess over the wild turkeys who come in our yard. I have had more clear dreams since being here, one repeatedly where he tells me, “I helped my parents and Erica make this happen for you, and I couldn’t be happier.”

Erica, my roommate, and Steve did have constant conversations about my next step and although we didn’t know she would be in the position to buy a house with me, she did tell him, not to worry that she was going to be there for me. Steve’s parents and him had many conversations about the house and although it wasn’t how we imagined the house to work out if it hadn’t had to be the way it was, then I wouldn’t be here today.

Each struggle I’ve experienced in life has led me to being strong enough to walk straight into a situation I knew would challenge me. I knew I could take care of Steve, not just because I knew love would guide me, but because my childhood prepared me. I know my time of caring for Steve has prepared me to be able to walk into whatever is calling me next in confidence.

Now to get fully settled in and continue to find my flow here. I’m slowing getting my creative time in, and working my way to being unpacked enough to not have the anxiety of clutter, and honestly this place called me here and I can not wait to see what it helps me to create!! Thank you again for continuing to support me. I hope you can feel Steve’s gratitude in not discontinuing to rally behind me when he left this realm. Thank you for sharing in the excitement with me. Your messages of joy have honestly taken my breath away. I truly feel honored to be chosen to live here and I cannot wait to continue to share it with you all.

It’s been a wild journey and if I could pull Steve down from the heavens to join me I would, but for now I’ll do the next best thing and that is to enjoy every day I’m gifted with down here in my little patch of Earth. I will remember to be grateful as I work through the challenges of life, and I will soak up every ounce of magic this place has to offer. Not just because I promised Steve I would, but because I know it’s why I’m here. I’m so thankful I’m here.

In Transition

Hey y’all. I am coming to you in the middle of pure chaos. I wanted to write everyone an update as well as share a few ways you can support me in this massive transition I am in the middle of.

I started August spending the first week at a river house Steve chose for me in 2016. A month after Steve passed I started reading old journals to trigger my memory for writing. I reached a journal from 2016, it was after one of our many hospital stays where doctors were telling us what was going on with Steve would not end well. I found the list that was titled, “Steve’s list, what Hope should do when Steve dies.”

I actually wrote an entire chapter of my book about this list, but number one was to spend a week at the river to heal, refocus, write, and have some space to dream about what the possibilities are for my future.

The week at the river was an amazing experience, I took our dog Marlowe, and it was our first adventure together. Everyday while I was at this river in the mountains I spoke clear intentions on wanting to find any way to find myself living in the mountains. I was inspired, focused, and energized by this spot in the Blue Ridge mountains. It was located on the Toccoa River, which was full of beavers, geese, and herons, and the most gorgeous misty foggy mornings and evenings.

The very day we returned home, my father in law reached out to me that our initial plans we had made for me to start taking over the payments of this house wasn’t going to work. We discussed the options and together we agreed it was in both of our best interests to sell this house.

The past two weeks have been full of processing what this means, trying to understand how to make the very poor financial standing I’m in work for future living, sorting through all of my belongings to try to sell and generate money, try to start packing, and figure out where I will land next.

I’m writing to you in the middle of the unknown, as I have had to reach out to my community to support me through this. Not just financially, although that’s a huge need, but emotionally. I am humbly asking for any prayers or visualizations that you feel called for seeing me secure and stable in a home. I also wanted to share what I have set up to generate streams of income currently if you are in a position to support me.

I finally started a Patreon and have two tiers set up. I will be adding more, and I am open to all suggestions. If there’s something you’ve ever thought about paying me a monthly fee for, please pass it along. :)

I also did a new art listing on July 1st with some available still and more to come soon.

I am happily (hopefully) selling half of my closet as well to downsize and raise funds.

I also want to share a podcast I recorded about a month and a half after Steve passed. It was interesting to listen to me speak before I knew how much change I truly was headed towards. I never imagined that just 4 months after Steve passed I would be here figuring this all out. I feel him guiding me each step. As I continue to exhaust myself each day with the many things, I will hear him give me ideas to make money, or I’ll see him in a property I’m looking at.

I want to be honest in that I have no idea where I am going, I am just taking one step forward everyday and trusting that the path will reveal itself more clearly as I continue to move. I want to shout from the rooftops how lovely and supportive my friends have been. They are all stepping in to help me in a variety of ways and I wish everyone to have the same caring, supportive friends I have been blessed with.

I have a few blogs written that I will be sharing, unrelated to updating on my life, as I’m hoping I can build this into a stream of income also, but it felt important to let you all know where I am first.

I am feeling terrified, hopeful, sad, excited, thankful, overwhelmed, everything. I am allowing the feelings to come, and giving them the attention they are asking of me, while keeping my eye on a dream Steve gave me. It was the night after we decided to sell the house, in my dream Steve was having a conversation with his parents when he stopped and walked over to me. He grabbed my hands and looked me straight in the eye. I felt like he was with me in real life. He said, “Hope you deserve better than this house. You can do it. You can. Do it.”

I woke up after that dream and had my focus I needed, as well as an inner knowing, that I can find my way to a more suitable living situation. I’m grateful he’s still encouraging me from the beyond. Him choosing me to spend that week at the river to regroup, to be given the news of needing to move just 24 hours after being home, I’d say Steve knows what he is doing!!

I still miss physically being able to have conversations with him, because he always knew how to ease my fears and encourage me. I do know without a doubt, however, that he is still here. I feel him, I see signs from him, he interferes with the TV, he speaks to me in my dreams. Thank you Boopy, for helping me through this transition and thank YOU ALL for the support as well.

The Next Purpose

I can still remember the day clearly. Steve and I had gotten into a fight, about him wanting a pill and it not being due, which was the bulk of any disagreements we had. After Steve coded in 2013, where his heart actually stopped, we never allowed our fights to drag out. We never wanted to have unfinished business for when the time would come.

It was an odd blessing to our marriage, that even if we never wanted to look at the other person again, we often had the perspective of how we would feel if we truly never did get to, and it made whatever we were mad about in that moment seem a lot less serious.

I walked in to apologize to Steve, for calling him a piece of shit addict, which was really my go to response to him repeatedly asking me for a pill he knew very well wasn’t due. I had my shame face on and I started by saying, “Can I tell you something other than I’m sorry for my reaction to your want for pills?”

His eyes which were glued to the Tobii already typing his response to what he thought I was coming in to say, stopped and looked at me. One blink, which means yes.

“You gave me purpose.” He smiles but doesn’t look away which means, continue.

“Before taking care of you I fumbled around in different jobs wondering why if I was doing what I set out to do, why I was feeling so unfulfilled. Even though I wish you were healthy, and we were having an argument about something like who forgot to fill the gas tank up, I wouldn’t trade it because taking care of you makes me feel for once like I do have a purpose.”

He smiled, and started typing, “I gave you that.” He looks proud, and continues, “You deserve to see yourself like I do.”

He did give me that. Our 9 years together were messy, challenging, and often times heart shattering, but he filled me with so much love, and taking care of him was my greatest pleasure and accomplishment. Prior to Steve I really felt too dumb or too incapable to do anything like I had been with him.

His encouragement through every stage of progression and his full faith in me opened me up to seeing just how capable I was. From learning his feeding tube, to learning to dig/suction vomit out of his lungs before he aspirated, to learning to suction his trache, to learning the vent, and learning a picc line, and all the way to learning to save a human when he is in true respiratory failure, over and over again.

I remember the day clearly that Steve called me in to tell me, “Having ALS is my purpose.”

I remember looking at him very much the same way he would me when I wanted him to tell me more. He typed, “I’ve always wanted to make a positive impact on the world, but I never had the reach to do so without ALS. Everything they come out and say could be a cause of ALS I have. From head trauma, to being an athlete, to exposure to herbicides or pollutants, blue green algae, getting jumped and hit over the head with a baseball bat.”

He finishes, “My entire life has been helping prepare me to have a life where I could impact people by giving me ALS.”

I always loved Steve’s thoughtful way of thinking, but it took me a couple days to really process what Steve was saying, but I remember replying, “I wish everyone the same peace with their circumstances as you have this minute.”

Together Steve and I faced our darkness and our light, and learned how to shine that light out into the world. While I saw my purpose as being his caregiver, he saw his as being a messenger. Not just for ALS awareness, but he wanted people to live their lives to the fullest before illness hit. He wanted people to learn how life could change in an instant, and be grateful and an active participant in their lives.

Even later in life as more people questioned his quality of life or why he would endure as much as he did, he never wavered from knowing that his suffering had great purpose. He wasn’t done teaching, he would say, until God was ready to take him home.

If you’re reading this and don’t know why I’m talking past tense, know on April 2nd Steve ended his battle with ALS and left this world in his sleep. His lungs had been failing for a long time, so his CO2 was built up, and he went to sleep more and more each day until one day he didn’t wake up. Of all the scary ways in which I would imagine him dying this was far more peaceful and gentle.

In the little over a month it’s been since Steve has left this physical plane I have felt a massive hole in my existence. I know being alive and really just being is each of our purposes. I know we don’t need to have some goal or job to be working towards. I feel the world really leaning into that as the pandemic has changed the world as most knew it. This world of pause and unknown has been one we’ve lived in for years.

As I am in a new area of unknown I have been feeling the ease my body is experiencing in no longer having anxiety and the intensity the last year of care giving was, but also have felt more lost on what’s next. As I’ve been sitting around trying to determine what I will do now, knowing my little cushion our friends built for me financially won’t last forever, I’ve struggled.

To me nothing will ever feel as purposeful as taking care of Steve did, so it’s been hard for me to see past that. I have had many conversations with Steve out loud and while I feel his presence and he has shown me lots of feathers which was how he told me he would communicate I have felt lost in direction or purpose.

Recently the necklace he picked out for his mom years ago was delivered. He picked it out cause he said my mom needs a dainty ash holder cause she’s a dainty woman. What mom doesn’t love a necklace picked out by her own son years before his death? She put it on right away saying, “I’m never taking it off.”

We then carried on conversation as usual, when suddenly in our “what’s next chats,” I begin to imagine it’s him talking through her. It’s clearly her talking but I can feel it’s him talking through her. I decided to lay down after she left because despite feeling mentally and physically okay in this new space , even if a bit lost, I feel very easily fatigued. So I’ve been giving in and spending a lot of time resting.

While napping I had a dream, it was Steve and I walking through an unknown landscape but it was more beautiful than anything I could have imagined. We were hunting rocks and I actually reached out to a friend after waking up because I want to know the stones I was seeing in the dream.

Each time we would stop to pick up a rock, he wouldn’t say anything except, “You know what to do.” He didn’t give me any straight up suggestions, but I woke up from the dream hearing his moms words, followed by him saying, “you know what to do.”

The day Steve died I remember feeling two very distinct feelings. 1. Shock, and really shock about the shock. It was surreal to have the cops and medical examiner and Steve’s family there, and to be witnessing the finality of it. No matter how much I knew this day would come, and even more so in this past year knew it was coming sooner rather than later, I was in shock. I was heart broken but the shock eased that pain. 2. Suddenly I felt very empty. The weight of the empty quiet house was nothing compared to the weight of an empty quiet soul. Steve made me a better person, he gave me faith in myself, he gave me focus, he gave me purpose and understanding like never before. He fulfilled me, and loved me, in all my pieces dark and light. He saw me more clearly than I even could myself. I knew I lost my soul mate but it felt like I lost my very soul.

I hung on to the numb until little by little I’ve come back to my feelings. While I don’t know specifics of what is next, I do know what to do, and that is just show up. You can’t find your next step tuned out or with your head in the clouds, like I’ve been. I need to show up, and listen to what my days are bringing me. Show up to my computer and write what words want to come out. Show up ready for opportunities that the world will bring to me. Show up ready to learn, to see, to not know but ready to know.

I opened my journal after that dream, and wrote pages. None of it was a clear step by step what to do next outline, but it was an understanding, that if my life had prepared me for and brought me to Steve, then why would I believe now it wasn’t preparing me and bringing me to what’s next. Why would I lose faith now?

I know I’ll actively have to earn money in the near future, and as I unravel my how I’ll do that, I am learning to open up and trust that the what’s next will soon follow. Mostly Steve wants me to remember that whatever is coming I am capable, I am smart enough, I can learn or adjust in anyway I need to. Just because Steve is no longer physically here doesn’t mean his encouragement isn’t. He had full faith in me being able to keep him alive in the most fragile and complicated circumstances, and I can feel his faith in my now what moments.

His gift that shifted my life to feeling more fulfilled and full of light, is still there shining bright as ever, and I just want to say thank you. What a gift. What a blessing. What a purpose. What a guide. What a man.

I miss you boopy, I will miss you daily, but I know you’re right. I know what to do. Life is about showing up open hearted and I know I can step into whatever next step comes, because your encouragement is still here. It always will be.

All the emotions of wild times.

I’ve had varied emotions all of 2020. I started the year feeling inspired to make great change, then accomplished for fulfilling some important goals I set. Then it was upset and feeling terrified as Steve experienced set backs that felt heavy and impossible to overcome. Followed by feeling full because of some family visits, to feeling hopeful seeing some healing in Steve.

Then came March and with it came shear panic and life altering realities. Shifting of some safety plans and leaning more into self reliance. This past week has been extra as this virus reality unfolds in the US. Feelings of frustration, desperation, anxiety, preparedness, hopefulness, to full acceptance of reality.

Pushing through some of the scary lung realities we’ve been experiencing the past few months with minimal help. Feeling even more thankfulness than I thought I could hold for the Earth. Thankfulness to be living in the southeast where spring comes early. It’s been often times overwhelming in the scariest and most appreciative ways. Mostly trying to stay grounded and sort through piles of false information to find facts. Handling things with Steve through shaky hands and tears and soaking up every magical drop of the space between. Fear and gratitude existing side by side, bumping into one another in a hyper aware social distanced reality.

Feeling protective, obsessive, going full in on any and every precuation; with equal acceptance of whatever is to come. Showing up, sitting down, pacing anxiously, scrolling screens, shielding brain cells.

This big thing coming I’ve felt all year slowly revealing itself. Giving time and space new meaning. Giving another day deeper value. Giving your loved ones more appreciation. Wanting to freeze time to create a bubble and break barriers to shine light and hope.

A constant checking in, tuning in, zooming out, pausing, and pressing play. Having to refrain from pressing fast forward. Soaking in the sweet, not ignoring the bitter, and attempting to digest all that’s being fed.

In these wild times of feeling every emotion that comes with it, I’m trying to hang tight to what blessings exist along with the crazy. What blessings are in your life right now?

How embracing fear has helped me face my fear

There have been many of things during my care giving journey that has made me meet my inner demons. Many things that have sent me spiraling because it was too intense to handle without bringing up unhealed traumas. So much so that I’m writing an entire book on it (yes I’m still working on that thing).

There has however been nothing that terrifies me as much as respiratory distress. I keep waiting for me to be like one of the Respiratory therapists I see who come in swiftly and handle things without any stress. When will I become a pro? It’s been over a year that this happens on a regular basis when Steve’s not on antibiotics so when will I just swoop in and handle business without the panic?

I guess the answer is never. It’s not in my DNA not to feel distress when Steve does. Handling a coding situation that deals with dropping numbers on the finger box that dictates our life, is not my strong.

My nerves are shot, so while I work through shaky hands and heart palpitations and try to stay calm as to not add to the chaos of everything, I’m internally freaking out. I silently repeat to myself, “I can do hard things,” as I try to as gently as possible reassure Steve he’s okay.

You see I never know if he really is okay. Is he going to be okay? Which one of these episodes will be the end? As much as I try to shove any thoughts like these into the back of my mind, they are there. It’s the reality. Doctors warnings ring in my head, as I see the sheer panic in Steve’s eyes as he tries to suck in any extra air through his locked jaws.

The sweat dripping from his face while I see his HR climb higher than even his highest peek. Each increase in heart beat mine follows.

Obsessively watching the finger box, as we have lovingly nicknamed his pulse ox, is nothing new to us. All the way back in 2013 when Steve was a full code blue and needed an emergency trache started our obsessive number watching.

Back then the obsession was to know when Steve needed oxygen, soon followed obsessing when he needed the ventilator full time, and eventually needing both ventilation and oxygen. Now it’s obsessing between knowing when to bag because our trusty O2 and vent aren’t holding good numbers.

The number on that little finger box dictates our days. 98 is great, 95 is okay, 93 what is happening, 91 start to bag, 88 start to panic, 83 fully black out and call 911 crying into the phone to please help me resulting in your house being full of cops, EMT’s, and firemen.

All while watching the number box the shrill alarm on Steve’s vent is repeatedly sounding off to let me know his peek pressures are too high. Of course this also isn’t a new problem but one that is increasingly getting harder to resolve. The sound sends shivers down my spine. It’s tone intentionally piercing to make sure you notice he needs attention, triggers fear on the first beep.

I’ve recently realized that I don’t need to become a master that handles business and feels no fear when respiratory distress happens. I need to dig into courage and face the fear without the negative reactions I give it. Often I turn my fear into anger as a way to manage it. I always felt I could utilize the energy bursts anger gives vs handle the energy drain fear takes.

Truth is the anger energy is fake energy and I end up feeling more depleted than I would had I just stayed in the fearful experience and manage my way through it shaky hands and all. Steve doesn’t need a caregiver who experiences no fear with him, he just needs one who can walk beside him in the scariest of times. It feels silly that the simple act of allowing myself to feel scared has really helped remove many of my negative reactions to it. Sometimes it doesn’t take a big action step to change behavior you want to, but rather to accept fully what you’re feeling.

To me running away from the anxiety instead of embracing it was my problem. Now that I realize that feeling the fear is the key to my sanity I have learned a few things to help me.

1. I needed to cultivate a practice that would prepare me for these sudden distress moments. A ritual that worked for me in order to restore my nerves and ground me into my body. Which for me entails spending time outside. I need to make contact with the Earth, which doesn’t always look like a barefooted hippie running around through the grass, although that is my favorite practice. Sometimes it’s bundled in three layers of warmth and leaning against my favorite tree. Whatever it is I just need to touch the ground and for at least 5 minutes, really though the longer the better.

2. Finding ways to deal with the “when will an episode happen anxiety.” I have to work not to nervously spend my days waiting for a vent to beep. This is something that comes and goes for me, and practicing grace with myself is the most important part. I also have learned some other tricks. Painting, making something with my hands, playing in the dirt, doodles, dancing, breathing, cuddling with my dog, watching birds or squirrels play, watching something funny, listening to an uplifting podcast. Whatever you find that helps you release some anxiety, hold on to it for dear life. Making the most of the space between episodes is the key to not just my survival but my happiness. This is important to notice that it’s not a distraction from anxiety. You aren’t running away from it but rather embracing the moments where life is okay and acknowledging beauty and peace when it’s here.

3. This is not a master and done kind of thing. One day I can handle a distress situation like a boss, but if I use that as an excuse not to show up to my daily practice, that means the next stressful situation probably will not go so well. If I don’t get it right one day it’s not a failure, it’s a lesson. Where do I need to adjust for the next one. It’s an ongoing process and it changes as often as you need it to.

Even if you’re not a caregiver or facing a life threatening distress kind of situation this applies to you. The world is a very unknown place, and I believe we are all beginning to understand just how little control we do have. So we have to show up for ourselves. So let me ask you, how are you showing up for yourself?

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