hereditary angioedema

Lessons Learned: Fall Term 2023 DONE✔️

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Before the cold temps took away my summer garden.

Most of 2023 was a trial by fire to test my mettle and I’m glad it’s nearly over. Things started out feeling off balance, but that helped me to chart a course into new territory to seek change and growth. I think I did ok. I started to work on finishing my AAS in Horticulture, and I was promoted at my job. I feel more driven than ever, excited by new challenges, and I’ve shed some old skin.

The Seed Studio—my workspace.

In August I received a set of cards to meditate upon and journal through. They were from the manufacturer of the life-changing medication I’m prescribed for hereditary angioedema that I’ve been taking for 16 months. At the time the box arrived the questions seemed unreal, like a joke, a marketing gimmick, or a skit on SNL—but they weren’t. At first I joked about them at one of my dinners, but now, yes, I must confess, they’ve become helpful.

I really have had a life experience that’s been horrible. It feels like I’m a patient in an Oliver Sacks book. I’m a patient reawakening from a comatose state in the 1990 movie based on his book Awakenings.

Some days back in the beginning of all of this were astoundingly upsetting and I felt terrified and alone in what was happening to me. I remember going to work, going through daily routines, and feeling like I was in the body of someone else. Things I’d tolerated in my daily life were absolutely no longer at all possible to accept as OK. I kept hearing “No!” in my head. At times I felt vulnerable, raw, confused, and misread. I eventually snapped somewhat, but that helped to wake me up even more.

Like the patients in the Oliver Sacks memoir, I live now knowing this sudden awareness of being awake, and healthy, is possible due to a medication. I’m not cured, I’m just free. I’m seizing the chance to live on my own terms, after fundamentally losing a sense of myself for 30 years. I have some personal autonomy for the first time in my adult life. It’s not a lot, but I’m learning what it means.

Looking back, it’s no wonder at all that I created a beautiful garden to live in, to hide in. It has been a gift to myself that’s been immeasurable in its therapeutic value as well as being a tool for me to communicate with others from a place few will personally know until they are much older. There’s beautiful magic in the instinct I had to keep myself connected to the world in the only way I knew going back to my childhood.

Home.

My backbone grew back quickly though, and I wanted nothing more than to protect myself. I’ve continued to feel excited about safety and calm. I can still feel that I’m healing and no longer have the thousand-yard stare with a stiff face in photos. (My facial muscles have actually softened.)

Yes, it was time to return to school to finish my second degree, and maybe, just maybe, consider a graduate program. (But that is yet a dream I’m not sure I will be able to reach… For now it’s one goal, and one day, at a time.)

Clackamas Community College.

My nervous system had been an alarm going off for nearly 30 years, and suddenly, that alarm went silent. I remember that day, and sitting in a chair thinking, “What am I doing with my life? What have I done to myself?”

My emotional work began here at home with boundaries, working with my husband who is on the spectrum, and it continued from there. Since then I’ve rebuilt my personal boundaries, learning more than I ever wanted to know about them, and I have a great group of friends and family who’ve come to feel like a protective circle around me. They reinforce play, creative efforts, general goodness, encouragement and support. All of this has worked wonders to reset my nervous system and to live a healthier life. On the medical side, my physical therapist has been invaluable as well in this process. It’s complicated to redo after 30 years.

A Bomarea gifted to me.

During the last 16 months, a few reactions from others have been unsettling. You learn who your friends are during times like this, and I’ve been surprised by how open other friends have become. People come and go and that’s a fact. It’s brought some pretty joy-filled folks into my life, some serious career-minded ones as well, and through this transition, I’ve also learned how to better manage my time and the energy that I have. I look forward to giving and receiving kindness and living in the NOW.

The people who deserve to be close to us are ALWAYS those whom we can make an agreement with to lift one another up to be our best selves. This doesn’t mean you judge them, or tell them they should or shouldn’t do something. It just means being there for them, listening, and supporting. Your BEING there is enough. My being there shows you I respect you and just as your time and life energy are valuable, mine are too, and it’s important to build that kind of trust and balance with others. It’s life-giving.

Poster in the classroom at school.

This redesign or rebuild had me returning to the time in my life when I became direly ill. This is not uncommon, since we must return to the initial trauma, and until recently, I couldn’t go there because I was still numb to it and had to be in order to survive. I was 18/19 and my adult life was just beginning. I can say now that I honestly died quite a bit as a person in the early 1990s, and am lucky to be alive and reintegrating now.

This process is not easy to write about, but I can do so since it’s been well over a year. Many tears have been shed, and that will continue as I process all kinds of things as I experience them in a healthy way for the first time. I have many who’ve been through this journey with me, and I’ve been researching the process scientifically (note the links I’ve added) so I have the words now to better describe things. But this is a grueling recovery.

I think of it now so often in relation to growing plants in cultivation. I’m just cultivating myself a bit more, and peeking out into the world in my new pink skin. It will get easier.

The pizza oven at school.

My apple cart clearly entered into 2023 with some serious damage but it wasn’t completely upset. My medical team began talking to me about what I was experiencing and helped to anchor me. I started by mapping my personal values, and since then, they’ve become a great foundation for decision making.

Making cuttings in class.

Clinging to this foundation tightly since last Christmas, I just kept going. Step-by-step, I made choices about who I want to be, and where I want to go. Knowing that at any minute I could lose the expensive medication is absolutely terrifying beyond belief, but this again has played into my decision-making. I’m not wasting any time, and I’m going after anything and everything I can—while I am able-bodied. I embrace being present in the NOW and relish in it.

The South Garden.

The moral fabric of my sail really had been torn up. With these repairs, I can set sail again. In part, I had few other options, was self-destructive and careless as I just sat there. Fun broke up the monotony, the constant swelling pain, the frustration, and the twitching anxiety of waiting for another throat swell left me treading water trying not to drown. This is what happens when your body is in distress for decades with little to no relief, and I’ve not even mentioned the nerve damage from back injuries. That is the other layer.

I spent three decades trapped under all of this, and it is no surprise to me that it caused me to struggle in relationships. I struggled in everything. Again, I must credit those I have loved, and who loved me early on in all of this, who have remained supporters. Love conquers all. It’s really true. Those are my people.

Classmates find my ever-bubbling enthusiasm for power tools entertaining.

My first term back at school is over and I did well—but it’s been funny to go back to “start over” and feel my way through what I need to learn now, dealing with processing emotions as I go along, and what to let go of to keep on track to keep going. Filling in the gaps of what I don’t know has been really fun, but complicated too!! I don’t always know what I don’t know until I sort through feelings.

Time for the insects…

At school it is time to rebuild into who I know I could be now, but I haven’t been able to be for years. I ended up neglecting my own boundaries and wellbeing, hoping that someone else would help and take care of the situation eventually. But, that didn’t happen. It won’t happen again, that much I can say now.

Serious teamwork here with my classmate Paul. Not perfect, but not bad for our first time.

I know my personal worth, my strengths, and my weaknesses at the end of 2023. I’m not saying I’m entitled to special treatment, or am anywhere near perfect, but when you live with chronic health conditions you need to set limits. I’m no longer willing to get myself into situations that will be high-risk when it comes to my exposure to unhealthy behaviors. And most importantly, I will continue to foster spaces where others feel comfortable. It’s been healing at school to speak up and to support others in classes. It feels like being myself again.

This is a tiny section of a garden area on campus we planted.

So, here’s a recap of the 6 courses I finished this term, and the kinds of lessons I’ve learned after tying myself to my chair many nights and weekends to plug away at reading, writing, and testing in order to pass with 6 A’s…

I picture myself THRIVING and being surrounded by kind and supportive friends who challenge me to grow—instead of challenging who I am.

Horticulture Practicum/Fall

In this class we alternate week to week. We learn greenhouse skills or landscape skills. We sow seeds, divide plants, and pot things up. We learn how to sharpen and care for tools, and we work with power tools. I’ve learned that my instructors will push me harder, that I enjoy journaling for the class, and it’s ok to be me. I’ve also worked to listen a lot to my classmates as we work. Each week I leave with new things to think about. I add my own work experience stories when necessary. I’m unlearning bad habits I’ve learned at work.

First Aid/CPR/AED

This was my third time being certified, but the first time it wasn’t required for a job. An online course, it felt closer to home as the anonymous individual needing help seemed more real. It reminded me of when I was a caregiver, and it somehow shocks me that I did that job. I’m not as closed off now as I was then.

Horticulture Safety

There are a lot of safety tips I’d not yet learned on the job, and it was a relief to hear how much self-care is emphasized. We were reminded over and over that taking care of ourselves lowers our chances of accidents on the job. An emphasis on ergonomics and awareness in our discussions about self-care and healthy habits was honestly fun. These kinds of discussions regularly in the workplace boost morale and keep employees looking for solutions to increase productivity.

Human Relations in Business

This was the class I struggled with, but I read the entire 400 page textbook, and the self-assessments and final essay helped me to process a great deal about workplace behavior, management styles, and leadership. I learned the areas where I excel, and those where I can make changes in my own management style in the future. Learning about different business structures was also elucidating. The modern style of collaboration is definitely preferred by most employees but it depends upon the company and the tone management wants to take.

Insect Identification

Entomology is one of those areas that I’ve avoided falling into for fear of never emerging. I grew up in the world of fly fishing, and know insects from observation. This class taught me a lot about my instincts, and how they’re good, but that I often lack the words to describe things. That is just how I’ve learned though, and it’s not a bad thing. This helps to create a different perspective on how I see the natural world. As my friend Susan and I discussed, we came to gardening after being raised outdoors, while many of our friends came to the outdoors through gardening. Seeing this more clearly, will help me to speak and write about nature in a more comprehensive and thoughtful way. Also, it turns out, I love Coleoptera.

Weed Identification

This seemed like a fairly straightforward plant ID course until I took into account that our school has a vibrant organic farming program. In addition to naming plants, and getting to know their families, we discussed controlling them. Since I literally work in greenhouses, a location where (according to our greenhouse instructor) there should never be weeds to begin with, EVER, this meant rethinking things. I valued the conversations from those in the group who had farming and land management experience. This class had me looking at the BIG PICTURE.

And that’s a wrap for 2023!! Next term I’ll be taking fewer courses, so I can get ready for spring at work and travel a bit for some talks and events. I dove in a bit deep this term, and that wasn’t a great idea. More self-care and quality time with friends in the coming months—and more plants!!! Lots of plants!!!

Last day of class. I made cuccìa for our potluck.

Propagation and Plant Production: Cooking up Plants for Friends and Strangers During Covid-19

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It’s late on a Thursday night in the month of October in 2020. For the last few weeks I’ve been feeding myself a steady stream of fantasy and horror films as I recover from a physical meltdown of sorts that’s common for myself, and seemingly unfathomable at times for others. I made it through the season, but we’re in the middle of a pandemic and for those of us that work with plants, this has felt like a never-ending season of what’s referred to as being “slammed” in a kitchen. Imagine months of this, at two nurseries, but I thankfully work behind the scenes, and this does make it easier for me mentally and emotionally.

We’re still waiting for the results of a final x-ray, but it’s clear I’m exhausted and damaged. While one spine issue improved, another disk protruded. Instead of swelling up with one hereditary angioedema attack, I had two simultaneously. My complement, immune, and nervous systems are all tired. I’ve been on a steady diet of anabolic steroids for just over a week now.

Yes, that’s right folks, I’m a doper! These are not illegal drugs, I have a prescription for them, but it’s surreal at times to really sit back and think about how hard I work to work so hard. I guess I’m passionate about what I do though, and plants inspire me to keep doing what I do.

I think it’s safe to say I potted up thousands of plants in 2020. Flat after flat after flat left my workspaces and were carted off to the public realm or else back into a greenhouse until they’re ready for their closeup. There’s a rush you feel at that moment much like the excitement of cooking in restaurant kitchen and you’re part of a performance and as the plates disappear out of your sight you breathe a sigh of relief and you feel more and more like a badass as the night goes on and you near the finish line.

When it comes to plants though, it is a bit different. The adrenaline rush is not quite as dramatic. I just perform the initial part of a performance. My part is to make the starter and to get it stable enough so that you can take it home and complete your task. Sometimes, I may even have been the one who sparked the seed into life. Once in the hands of the gardener, with the plant being planted, it completes its lifecycle. I’ve helped to supply so many gardeners with the supplies necessary to make their artwork, or else to create their calm and happy space. With each flat I complete I toss out my hopes and wishes and I let go of my control of them a little bit. They all cannot live. Some of the duds must be plucked out so as to retain some integrity to the batch. Plants must be edited as they are presented. I’m probably better at that nowadays than I am at editing on the page but it’s so much clearer when you see a flat of plants. I’m not seeking out misspellings or grammatical changes, I just need for them to be uniform, a baker’s perfect dozen.

Once a flat is processed I turn my back and forget about them and move on to whichever plugs or plants need to be up-potted, re-examined, assessed, and often I help to make plants look a bit more appealing with snips here and there. There is never a dull moment in production and propagation. It’s a hamster wheel with a blur of plant life forever in our midst.

Nursery work is hard and complicated. Sometimes the monotony of it is a challenge but you look for differences and subtle small things in your crops as you go. I think of this as the ideal time to use the boring repetitive moments as a teaching tool of some kind. It’s a moving meditation. For my physical therapist, she’s used this aspect of my jobs to help me work harder on my PT. We must all make the most of our daily lives, and this helps to define us, and give us meaning.

There is an art though to the juggling and rhythm of growing crops. Nature truly is the choreographer that we work with as we do our many dances through the seasons. It is the rhythm that we live by in the plant world that I live in and I’m sure that’s something others around the world share with me.

Folks have asked me a lot if I’ve missed my dinners this year and that’s been a tough topic for me. During my dinners I rarely spent time at the table with the guests. I was in the kitchen working hard and I don’t want to do that again. Taking back the space in my back garden this summer really helped me to get through everything. I spent quality time in the space I created from scratch. This let me consider the development of my own recipe. My distaste for some of the ingredients I’d included there. I gardened in this space and breathed in it. I made plans for changes, and thought through my missteps. Clearly, gardening and cooking conflated and I realized just how much I love propagation, plant production and kitchen work. I reached a kind of self-actualization in my hammock in the back garden in late summer, hanging right over the spot where my table usually sits and it felt so good. Eureka!

Potting up thousands of plants still makes me feel like I’m cooking for all of you though, and there is yet that space between us both, and I’m hurriedly working behind the scenes, so that you can feel pleasure. Maybe I’m an enabler after all. But this relationship feels even more complex and poignant than ever, during a year when we’re all living through a pandemic. We must continue to make the most of it.