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.
Permanence in impermanence, a word jumble by Hope.
There are so many words jumbled in my head right now that I want to put down on paper. I want to write about entitlement, and how following that feeling of being entitled to your own opinion, expression, action etc, despite how it affects others is one of the problems I see in today's age. I want to write about how record breaking temperatures, floods, sink holes, fires, and climate extremes are our normal, and still people choose denial and continue to heavily contribute to the problem getting worse.
I want to write about guilt and how people use it instead of accountability and growth. I want to write a response to all of those who say people are too sensitive these days, and point out it's in fact the opposite, people aren't being sensitive enough. I want to write about what really matters vs what's a distraction. I want to write about the thousands of feelings I am experiencing so I can be able to articulate them and then run far the fuck away from them.
I want to write about the fact that I cry and laugh each day, it's no longer one or the other, it's very much both. In fact currently, it's everything at once. I want to write about the magic mother earth is giving me despite her also totally revolting, and how it's all symbolic to the beauty and tragedy that coexist at once. I want to write about the importance of acknowledging duality, and how there's literally 500 contradictory ideologies of how to see life. Is it that things just are, or do both sides exist, or does it have to be one or the other? Who decides this?
You see my mind if overflowing with words, ideas, ideals, processes, and too much information. It's not just what is happening currently in our lives, with Steve being told his antibiotic resistant infection not only will not go away, but will just get worse; that's rendering me unable to write or speak many complete thoughts. It's not just summer heat making my brain feel like it's melting in this swelter, or the information being fed to me on screen after screen.
So what is it?
It's OVERWHELM. Too much information, too many opinions, too much noise, too much to do, too many ideas, too many people to please/respond to/help/update/change..... too many problems to overcome, too many complications, too many things to figure out, too many images to maintain, too many words to untangle Too. Fucking. Much.
So why write anything, I suppose you're wondering? I wondered the same thing, but I just needed the very act of typing words on a screen. Something to break through the blank white box staring at me. Something to acknowledge where I am and where I want to be. Accept what is, while doing the work to get to the other side. Sometimes I have these needs that lead me to do things that don't always make sense to the outside world, or even myself.
Like last year, I had to have a tattoo. It wasn't so much a want, even as strange as it sounds, it was like needing a dose of medicine to overcome an illness. My cousin's wife had drawn this bad ass peace sign, that I messaged her saying, I wanted that on my body permanently somewhere. She graciously gave me permission, and the minute I had someone to stay with Steve I booked an appointment with the closest tattoo artist I could find. I showed him the drawing and when he came back with his sketch I didn't even compare the two (a very rookie mistake to make for a not so rookie). Sitting in the chair I was levitating as he was tattooing me. It wasn't until I got home and compared the photo and the tattoo that I realized how drastically different the two were. I then had an existential crisis about the whole thing, and cried for three days about it. Because yes while I realized in the world we live in a tattoo that didn't turn out how you wanted IS NOT a serious problem at all; It is however how I felt, so while understanding this was not a crisis I allowed myself to cry.
Instantly I was given the medicine I needed and it's taken me this whole year to learn to love the tattoo for what is is. Which is what this blog is for me today. That tattoo was the permanence these words are currently offering me. The time I got the tattoo last year was around the time Steve began to seriously teeter with "am I done with this shit (ALS) or not". Well, currently we are looking the, not by choice, impermanence directly in the face, so that's why I want to write any words down that can permanently mark this moment in time for me.
I have also been wanting to find a way to share these beautiful photos my friend Jeremy took for me, for no reason other than I asked him to. My small time playing model helped me realize that it wasn't the act of playing pretty that led me to loving being in front of the camera, but it was the act of capturing permanently a moment of creative expression. To perhaps remind me in moments of feeling uninspired, that there was this time I was so inspired that it is held beautifully in a permanent form like a photo.
Growth Doesn't Happen in our Comfort Zones. Accepting Help.
Hello for the first time in 2018. In the last blog, I tried to be all cute, and claim I could speak what this years words were going to be. I had the best intentions on those being my words for the year, but the year chose different words for me. Words like: humble, stretch, grow, release, are what's coming to mind.
If you follow us through any other realm than just our blog, then you know we had a recent hospital visit that almost took Steve from us again. Being septic, getting strong antibiotics, ALS and it's neurological challenges, and strong pain and anxiety medication rendered him unresponsive. He was overdosed and withdrawing at once. It was one of those moments where we didn't know what Steve would come back, if any, from this experience.
We are so blessed to have not just Steve back, but a significantly less medicated and therefore more alert Steve. Our blessings far outweigh our struggles, but I can't keep running from the struggles. This year has presented us with a financial struggle that's new to us. Without giving too many details (because I really shouldn't/can't) we can no longer sell Steve's paintings. Being on disability and making an income like we did cannot coexist, and well now we have to be really humble and ask for help.
Asking for help isn't the only way life's humbling me right now. A recent hiccup with our home health, where they almost kicked us out of their service (because they can for any reason they want to), also has left me humble. I tried to control a situation that isn't mine to control, and it definitely backed me into a corner.
A place I don't feel comfortable being in, but as they say growth doesn't happen in our comfort zones. Maybe it's because I grew 5 inches in a summers time growing up, that I remember actual growing pains; but it's happening on a much more spiritual level these days. I don't like relying on others, I don't like being out of control, and currently that's where we are residing.
So 2018, much like the past 7 years have (shout out to our 7 year meet-aversary), definitely brought up all shadows I've avoided for most of my life. This reality is truly having me meet all sides of myself, and learn to love her. It hasn't always been easy, and a lot of times it's left me only being able to take care of Steve, myself, and my immediate responsibilities (dogs, house, bills,); and leave the rest behind.
In a sense it's a release, and not one I was always willing to accept. Letting go of the need to control it all, helps me regain the control of what I do have. Trying to control EVERYTHING around me was literally making me mad. It's one of those things, where I would look back and think, would I come back from this? I felt so ragging mad I thought I was there for life. Until this past Monday, as I'm sobbing on the phone with our home health, begging them not to kick us out. I'm shouting out between tears, "I'm sorry I complained, I'm so grateful for what you all offer me, and I can't do this alone."
I couldn't figure out what about the conversation shook me so much, I couldn't stop thinking about it. It wasn't that I wanted to complain about it because I literally have to accept the situation as is, and that's a reoccurring theme this year. I'm coming to understand that the reason this conversation has stuck with me, shook me, and literally left me changed, is because I finally said the words out loud.
"I can't do this alone. "
I've been trying to for so long. Don't get me wrong, I have my in laws who I call on when I have nobody to help me turn Steve, or to help me deal with our animal roomates. I am a big bummer in the girl chats sometimes because I just need to let it all out, and I come to you all when we need support. So I am opened up to it, but not as much as I need to be.
We need more help than I've been willing to ask for. I know we are in this situation not just to be humbled and learn to ask for help, but to also slow down. We can't hustle and make that money, literally is also a message that I need to stop the hustle of it all. Hustling through routines, through miserable times, through Steve needing me, through one project just to get to the next, through the lists, etc.
My sister in law started a gofundme for us, which I haven't shared yet, because I couldn't bring myself to do it. Because I hadn't been fully knocked down to the root of it, until now. So if you have it to spare you can either donate there, if paypal is more your thing that works too, I'm on venmo (Hope Dezember) I know that's what all the cool kids are doing these days. If you don't want to give money, but want to give a supply or pay a bill we are always open to that. My pharmacy would forever be grateful to anyone paying them.
We do have some things we are working on. Our ALS chapter does do a 750 grant which they did approve me of. The problem is you have to pay the $750 first and then you get refunded, and I haven't had the money to pay 750 to anything. We also want to offer you all some gifts for donations (t-shirts and other things in the works), but again we need money to cover the up front costs.
So that's where we are. Not the easiest blog for me to write, which is why I've avoided it for so long, but here I am. Thank you all for supporting us through this journey continuously. I am forever in awe of each of you one our side.
