Right now, with all the painful, difficult stuff streaming into all of my newsfeeds and throughout so many of my social media channels, I need something gentle, compassionate and positive to read. Something that gives me hope and reminds me of all the good in people and in the world. Something that reminds me that I’m still covering ground in my process of transforming chronic illness in my personal life, and that can also hearten others chugging along on their journeys with illness.
Today’s post is as much for me as it is for you – a set of reminders that the little decisions I make in my everyday life, for even the small things…. ESPECIALLY for the itty bitty things, make a difference.
I continue my series of blog posts on resources with the process by which metamorphosing our gardens – making changes in our lives by listening to the call of our souls – gives us pointers for this chronic illness journey. I use the example and lots of pictures of our actual garden that David and I transformed.
It’s something my soul loves to do. It’s what guides me with the little decisions that delight and serve me. May these metaphors and tips and examples serve you too.
I share snippets of my story and what I’ve been up to in the past months and year, along with more tips on how following our impulses supports healing … in our bodies, in our relationships… with our emotions, and in our lives. It keeps coming back to listening.
Transforming Chronic Illness
As some of you know, David and I downsized from a house to a condo a few years ago. Both of us wanted a little bit of land so we could still feel and be close to the earth.
Gardening is a resource for me. It gives me pleasure and I love having dirt to sink my hands into.
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I. Preparing the Ground
1. What Makes Your Heart Sing May Differ From Another’s
When we moved in, our little yard had a raised veggie garden that the previous owners had created with love. We had enjoyed growing tomatoes, lettuce, spinach, carrots and other yummies at our previous house too.
But what we wanted here with our postage-stamp-sized yard was a visual feast. As in … Flowers. That’s often how it goes – what I love is usually different from what makes another’s heart go pitter patter. Remembering this when you have a chronic illness can be so very helpful.
What works for you or appeals to you does not have to be the same as what works for someone else, even if they have the same symptoms or disease. Whether that is a medication or other treatment, the health care professional you like best, or resources that support your social nervous system and help you feel more ease or peace or kindness in your life.
2. Get Creative and Reframe The Problem
Our first steps in converting our garden meant removing the stuff we no longer needed. There was a brick path between the boxes, railroad ties around the perimeter, and a surprisingly large amount of dirt sequestered within the beds.
David dug it all up. But we had nowhere to dispose of any of it.
Both of us liked the idea of finding an easy way to get it out of the yard. So I craigslisted it – bricks, wood, dirt, frames and all. One at a time. For free.
There’s a reason my husband calls me the Craigslist Queen – I can “sell anything.” Because there’s (almost) always someone who wants what I have if I frame it correctly.
I didn’t realize the challenge of letting what turned out be the most popular thing – the boxes for the raised beds – go first, without the soil, which nobody wanted. Kind of like the diseases not one of us ever wishes we had.
This is where I decided to stick with my plan and get creative. I didn’t want to pay someone to remove it (although I kept that as a backup plan). After various trial titles on craigslist with no takers, I finally figured out a different perspective.
I reframed the dirt as “Organic soil” (perfect for someone (else’s) garden). This was true, but I hadn’t thought of it that way in the beginning since it wasn’t something that I myself wanted.
It took much longer to “go” than the wood, and a few false starts with people who didn’t have a wheelbarrow, or a car, or couldn’t make it as they’d originally planned. Then a landscaper came and removed it all in one go. I didn’t have to lift a finger.
This is how transforming chronic illness into something I can cope with works for me. Understanding that my symptoms are real and stem from a nervous system caught in a cell danger response of fight, flight or freeze makes all the difference. It means it’s not in my head, not my fault, nor due to a genetic defect I have no power to change.
Instead, it means I have options and choices. Both in how I view myself and my illness, and also in what I can do about it (here’s more about these perspectives and my story with chronic fatigue).
3. Skip the Short Cuts
Once the area was cleared, I wanted to dive in immediately. This is part of the fight/flight in my system that can pull on me and that often makes me want to keep going instead of taking breaks, or going slowly, or even gently. My ever-ready-energizer bunny that is actually a way of trying to avoid falling into freeze and immobility.
It’s also because I find planting a brand new garden to be really fun.
But David was thoughtful and had noticed that this dirt, which had been underneath a foot of soil for many years, was very dense. He felt that if he mobilized it all first, it would make all the other steps easier.
So he dug the entire bed up. It was packed in so hard in some places that it was almost like cement and he had to really work it. So we slowed down and gave it the time (a few extra days).
Preparing the ground turned out to make the next steps a total breeze and even more pleasurable.
This happened for me with my chronic fatigue symptoms some years ago too, when I made big dietary changes.
I cut out all carbs and sugars because I was having so many symptoms. Even though it was difficult and took a lot of will power to persevere for 4 years, it decreased almost all of my physical symptoms. This, in turn, gave me more “margin” so that I didn’t get as triggered, frustrated or anxious with my symptoms and flares – in large part because they didn’t happen as often. Also because they weren’t as severe.
Changing my diet also gave me greater capacity (such as sleeping better), the ability to do more things for my health (such as working with new providers), and the emotional energy to do more in my life, including more blogging :-). The effort was amazingly worthwhile.
II. Reaping Phase I – Planting
4. Anticipate Temporary Chaos
As I’ve mentioned in previous resource posts like this one, there tends to be some chaos when we try new things. This project was no different. It helps to assess whether issues that arise are actually a problem or whether it’s part of the “experiment” we are trying.
Changing my diet was like that. I had to experiment and see what worked (and what didn’t).
This was especially true when I first started a new way of eating. On the GAPS diet, which I followed for 2 years, I learned how to make big batches of broth and broth-based one-bowl meals that tasted good. I also had to learn through trial and error what my system could tolerate (meat! green veggies!), and what it could not (probiotics in any form, including the tiniest smaller-than-a-pea amounts of ferments such as sour cream or home made sauerkraut, which stimulated my symptoms such as restless legs, dry mouth and eyes).
Recognizing that this was part of my learning curve made it easier to see things as “experiments” and then either keep or discard each food or practice.
5. What You Are Willing to “Pay”
What we are willing to pay for varies. Sometimes you want things for free, like getting rid of our
dirt soil. Some things you are willing to pay for, whether it’s through sweat and hard work, will power to make those dietary changes, patience, money, or whatever.
We wanted landscaping rocks to add a layer of visual interest to our new garden. We were willing to buy them. And we had fun doing it too.
III. Reaping Phase II – Choice
6. Choices Are Gifts
There are all kinds of phases in planting a garden as well as in healing.
We added another layer of interest by planting spring bulbs a few months after getting our flowers and rocks situated.
Crocuses, miniature irises and tulips are among my absolute favorites in the plant kingdom because of the huge amount of color they add and because, at least in our climate, you can stick them almost anywhere and they will grow. Despite you. Despite what you may not know. Despite poor conditions. Despite (and even because of) cold temps. Despite drought. Despite long winters and cold, drawn-out springs.
They are also associated with happy family memories, as these are one of my father’s favorite plants too. He went hog wild in some of our yards when I was a child – buying out the hundreds of remaining bulbs at the end of the season, strewing daffodils all across the lawn, and making things look so damn gorgeous.
It can be amazingly worthwhile to put the effort into preparing your “soil.” Finding what makes sense for YOU – whether it’s a perspective, a paradigm shift, or a health care professional who treats you like a real person. I love my dentist, for example, who is an hour away. She’s amazing, thoughtful, talks to me like a human being, and really listens. I feel seen, and it’s so worth the drive, even as I try to go as infrequently as possible :-)
7. Enjoy The Process
When we moved I really wanted a porch. A place to sit. To Just Be. The chance to simply observe beauty.
This was part of why we wanted a flower garden instead of a veggie garden.
We got to enjoy the colors. And keep making plans for next steps.
8. Keep Giving Yourself Permission
The things that light us up and that facilitate resilience tend to support our social nervous systems. They foster our sense of connection, peace, safety, joy, ease …
We can so easily dismiss such experiences because they seem so “light,” so “little” in the face of the enormity of our life-altering and debilitating symptoms. As a result, they can feel like a low priority. Or we may dismiss them because it costs money or time or effort. They can seem like spitting in the wind compared to other things we may feel are more important in our process of transforming chronic illness.
But these are the gems. The pearls. Like bulbs are the stars in my spring garden.
You get to really play with choice sometimes. Such as selecting your favorite colors. I love deep, intense purples, yellows and reds. I love to play with shape and size, and even with the season of bloom such as early, mid or late spring.
This means that a single hobby can provide a whole bouquet’s worth of options that feed your soul. So keep listening to your soul, honoring, staying curious, and following what calls or whispers to you. Whether it’s a hobby, or a special skill, a musical instrument, what you place on your bedside table that inspires you when you are feeling at your worst, what you have on your wall, no matter how small ….
9. The Groundwork Makes Things Easier
Because of David’s preparation of the soil, planting the bulbs was blissful. It was a breeze. I was able to plant hundreds of tiny crocuses and miniature irises and species tulips using nothing more than a trowel, when it would otherwise have taken a shovel and more elbow grease than I was capable of.
IV. Reaping Phase III – Allowing
10. The Waiting and Patience Thing
Preparing the ground and planting bulbs has to be done months before you can reap. You plant bulbs in the late fall such as November or December here in Colorado, and the first blooms don’t emerge until February at the earliest. Colors peak in April and May.
This is so very much how I have experienced my journey of transforming chronic illness. It seems that most of what I do is a lot of groundwork. Supplemented by trust and patience.
11. Symptoms Guide Us
I have long suspected that if I still have symptoms, it means some part of my brain and body is still caught in a state of survival.
That I / me / we are still stuck in some physiological state of defense. As a result, I have felt the need to keep working and chipping away at it. For me this has been through reducing these states with regular sessions of somatically based trauma therapies over the years.
It has turned out to be true – the presence of continued symptoms has responded to continued work with my nervous system.
I’ve learned just how deeply my system has been caught in states of freeze. Deep winter. Mild winter. Variations in between.
Spring has continued to come for each of my symptoms. Some slower to improve than others, but all eventually softening to some extent.
12. Play. Listen. Wait.
Working with my nervous system patterns of survival has served me beyond what I had dreamed of (even though I had hoped it would, I hadn’t known if it really worked this way).
My continued improvements in health are big evidence for me.
These changes – which I’ll tell you more about below – deeply support everything I’ve wondered about regarding how powerfully we are influenced by adverse life experiences – in babyhood, in childhood, in our attachment relationships.
This process has also happened through strengthening my capacity for resilience and the part of my nervous system that can, all by itself without any will power on my part, inhibit fight/flight and freeze.
That comes from all of these additional things like play. pleasure. connection. gardening. resting. waiting.
13. Taking a Break Can Support Healing
Working with my health – and the part of me that gets immobilized, or fearful, or resistant to trying new approaches, or that wants to hibernate – has also meant taking breaks.
Sometimes, as in the past few months, I’ve felt tired of the hard work this process of transforming chronic illness takes. I’ve not wanted to do ONE MORE THING.
Sometimes, we need to honor the impulse to rest. And allow.
I’m in one of those phases now. I don’t want to do anything that I don’t WANT to do. I feel huge resistance to doing more trauma therapy, for example.
I continually question this process of taking a break. I keep an eye on these feelings of Resistance to Doing More Work, because the feelings of loss and longing, of aloneness, of difficulty reaching for and taking in and feeling support can be pretty intense. As a result, there are parts of me that really, really don’t want to feel more, or work more, or go anywhere near them. This is a natural response to trauma.
That’s okay. I’m working with it as wisely, compassionately, and gently as I can. Because there are also parts of me that want and need down time. Break time. Rest time.
Sometimes it’s important to allow things to gestate. To allow work to happen underground, on its own, without effort on your part. To honor the parts that crave more ease and play as part of the process that supports healing and transforming chronic illness.
V. Reaping Phase IV – My Improvements
14. I’ve been able to TRAVEL!!
My resistance to doing more – or reframed as My Desire to Do Things With More Ease – comes after a year of big improvements in my health. Of having made big gains. Of therefore having been able to DO a lot more.
My resistance, for example, comes after having gone to Europe not once but TWICE last year in order to work with multigenerational trauma in my family system. It was powerful. It was also so very freeing to be ABLE to do it.
I also attended a multi-day birth process workshop last year to work with prenatal and perinatal influences, which affect my ability to connect more deeply in my intimate relationship. I’ve done many of these over the years (perhaps 7 or 8 of these 4 to 5 day workshops), along with a multi-year training. It’s deep work that takes attention and effort. It’s also what helped me be ready to enter into my first long-term, rewarding and satisfying relationship. And to keep learning, growing and working through old patterns with David.
Last year was filled with intense, yet powerful work. I reaped enormously in being able to DO this work. It was a blessing.
Remembering this helps me recognize that taking a break isn’t because I’m giving up or being weak willed or that I’ve stopped trying because I feel better. It’s good to look back and take stock once in a while. Just like enjoying your garden when it blooms. Or checking to see which plants need more water or sun or shade. And to then adjust accordingly.
15. Changing My Diet Helped More Than I Ever Imagined
I mentioned in a resource post last year that I had intolerances to food that increased over 10 years until I was having symptoms from even green vegetables.
It’s one of those symptoms that sounds crazy, even as it was all my body could tolerate. Food intolerances are common for many of us with chronic illness. I came to see it as my body responding to certain foods as sources of threat, so I kept working with it from a nervous system and trauma perspective.
I changed my diet while I was working on this pattern through trauma therapy, because the trauma work wasn’t solving the problem very quickly. This is not uncommon. I also didn’t know if it COULD solve this symptom.
When I started worsening again after 2 years on GAPs, I changed to zero carb, which my body loved. I got more energy for the first time from any dietary change I’d ever made. That was something to celebrate.
16. I Can Now Eat Anything
After 4 years of eating in a pristinely clean but also very limiting way that made it hard to go anywhere, including to most restaurants – and hardly ever cheating even a little because the symptoms weren’t worth it – my will power started to shift. I wasn’t ready to let this way of eating go, but something in my body was.
I discovered my fight response starting to emerge more strongly that year and I ended up setting a boundary with my Dad. To my utter delight and complete surprise, my food intolerances decreased within days.
I doubt it was just that one action. Rather, I suspect it was all the groundwork I’d been laying for years. The trauma therapy, mindfulness, working on recognizing triggers and symptoms and how to stop reacting, and more allowed me to first feel the need for the boundary. To then actually set a boundary, and then to hold one. This simultaneously allowed my body to shift out of this particular defensive response.
I’ve been experimenting with new foods for over a year now and have very few symptoms anymore. I still get a slightly dry mouth and dry eyes, occasional mildly restless legs, but my body is doing remarkably well with food now.
I’m eating EVERYTHING. This includes gluten, wheat, nightshades, sugar, desserts, dairy, corn, pizza, Mexican food, Asian food, vinegar and salad dressings – all things I had trouble with for 10 years.
It is so incredibly liberating that I’ve simply worked with the fear of symptoms as I continued to experiment with the range of what I eat. I’ll see how this evolves. For now, I am letting go a little and indulging my sweet tooth. I am so deeply grateful and pleased and excited. I’m enjoying every bite – such as chocolate cake, carrot cake and this week, banana bread with chocolate chips and nuts (seriously!).
17. I Have More Options
I have enough margin now that I don’t have to work it all quite as hard, at least some of the time. For example, I don’t have to be absolutely disciplined every single day with all of my self care tools. I no longer have to take 2 walks every day in order to avoid having restless legs at night. That symptom was a great motivator. I also worked with it intensively as I loosened up my diet (which tended to increase this symptom in particular), by staying with the sensations in a deep meditation without moving or reacting to it. I’d never succeeded until last year and it took a number of 2 hour marathons of “being with it.” Then it shifted and is minimal now. Wanting to eat normally was a new motivator. My nervous system had also gained more capacity over the years.
It’s wonderful to be able to stay inside on cold nights now if I want, or simply because I want to relax :-)
As a result of all the groundwork, I can take breaks with a little more ease and take the time to smell the flowers.
18. I Have More Trust in the Process of Recovery
While I am still doing an occasional trauma therapy session because I continue to have symptoms – such as difficult emotions like old grief, frustration (fight energy), and anxiety (flight energy) as my body and physiology start to emerge from states of freeze – everything is improving.
My flares still happen. I can still get quite tired physically, such as for a few months after my multigenerational workshop in Germany last September.
But I have a big context for these symptoms and flares. I know it’s because my body is working on sorting things through. I know that my body can still get triggered into symptoms AND that it will very likely recover.
This knowledge helps me to keep trusting. It helps me know that my choices, patience, groundwork and all the seeds I’ve planted are growing.
So when it snows, there is at least some part of me that knows it won’t last. That spring is coming. I know just how incredible the coming blooms will be and that they are fine with a little turbulence, sleet and snow. They’ll just wait a little, and then remerge.
Just as my health is reemerging. Just as my resilience is growing and I have more bounce back when exposed to stress and triggers, and generally fewer symptoms.
Although I don’t fully know just where this process will take me with my health in the long run, I work to keep listening and trusting and being with the process as best I can. One step at a time. One day or month or year at a time.
We get to reap another year of ecstatic spring blooms in the next few months.
19. My Capacities are Increasing
Since my multigenerational work in Germany last September, I’ve been making progress with a pattern that elicits fear when I mobilize – such as moving back into being more active with my career. Such as coming more deeply into intimate relationship.
The first thing that happened after my first workshop in Spain was that my work life started speeding up.
I / and my blog were nominated for a WEGO Best Blogger award – and we were one of 5 finalists in this category. It was a humbling, exciting and exhausting adventure :0-)
I also started getting invitations to speak at online summits – such as with a group of amazing educators, therapists and beyond on Healing Childhood Trauma through Avaiya University (it’s still available for free). I’ll be doing another interview or possibly two with them later this year – one about trauma and type 2 diabetes and another possibly about PTSD. I will keep you posted.
As some of you know, I then gave my first talk last November in 15 years, at the Association for Prenatal and Perinatal Psychology and Health (APPPAH) conference in Denver. I presented a new concept I’ve developed called adverse babyhood experiences (ABEs) and talked about how ABEs are risk factors for chronic illness (and provide insights and tools for healing).
I was also invited (thank you APPPAH’s Kate White!!) to record an ecourse on ABEs as part of a “Perinatal Care Through a Trauma Informed Lens Lecture Pack,” which will be available for continuing education credit sometime in the next few months. I’ll let you know when that happens too.
These are all amazing signs of that my capacity and health are budding.
20. My Brain is Working Better and I’ve Written a Journal Article
After my talk last November, I wrote my first journal article in over 10 years. When I tried to write one a year ago, my brain turned to mush within two days of trying to collect and integrate information from multiple articles. This year, it was so much better. More progress.
It’s taken me a few months, and writing an academic style, very dense journal article is why I haven’t written anything for the blog in so long. Yet I’ve been able to pull together over 100 references into a detailed article introducing ABEs to the world. It has since been published by APPPAH’s journal, the Journal of Prenatal and Perinatal Psychology and Health (JOPPPAH).
Being able to write like this, to hibernate, to be happy at home without needing anything to be different, to spend little time and energy “out there” and let it instead focus on “in here” at home, has felt as though I am doing what I came here to do in this life. It has been so incredibly satisfying to feel the passion AND have enough energy and capacity to follow the impulse. I know it will keep changing and for these past few months, it’s felt like a gift.
My article was published in the summer edition of JOPPPAH.
It’s arrived since I wrote this and you can download it from this blog post.
I’m now working on an article for a medical journal about trauma as a risk factor for type 1 diabetes. We’ll see who is willing to publish (2020 December update: Covid happened so we’ll see when it’s time to try again).
Each one of these “flowers” feels so remarkable. Beautiful. Meaningful. Extraordinary.
My margin and reach are growing and I’m getting to share this amazing information – stuff that so many of us here at Chronic Illness Trauma Studies recognize as being part of a paradigm shift in understanding and working with illness. It’s a little like sitting on my porch and watching things BLOOM.
David and I have been thoroughly enjoying our garden over the past 3 years. Like us, it keeps evolving. Changing plants to new spaces when it turns out there’s too much shade or too much sun or not enough of the right soil or water. Experimenting with new plants to see if they work well.
Here’s to our ongoing process of transforming chronic illness, in each of our own unique, quiet or spectacular ways. In all the ways that resonate with each one of us. Wishing you and your soul well on this path – may you continue to find ever increasing support and reaping.
What feeds your soul? Your cat? gerbil? labrador retriever? Your own garden or houseplant? Your favorite, comforting blanket or pillow? Music? …
Want more soothing, encouraging, inspiring things to read? You can download this post below or read the following other posts on resources. You can go to them directly online or download them below.