An Invisible, Dynamic Disability

This post is long, and the video is long, too. This time, the content of the post and the video are the same, so you can choose to read the post or watch the video (or both). Anyway, thank you for your attention.

Did you ever wonder what ‘invisible’ or ‘dynamic’ disability means? Or how it feels, and how it can affect one’s life?

Those who know me know that since my childhood I have felt attracted to healing from different points of view, and although many things in my life have changed, healing has always been a leitmotif. I believe that healing is any journey that leads us to discover more of our wholeness, and to integrate parts of ourselves that otherwise we would never unveil or acknowledge. I have some resistance to calling myself a healer, but indeed this is what I do, helping others understand how to turn any health challenge into a discovery.

In my life, I have gone through several health challenges, some of them more related to pain than others.I started suffering from excruciating pain in my neck and shoulders as a teen, because of excessive piano practice under the guidance of an abusive and irresponsible, ego-centered teacher.

In the many following years, I had some accidents involving my neck and spine, and my situation worsened, but I was always able to recover fully.

Then, about ten years ago, a couple of dormant viruses that I was hosting without being aware of, woke up. For a few years I experienced symptoms of CFS/ME (Chronic Fatigue Syndrome-Myalgic Encephalomyelitis), which — besides unbearable headaches and body pain — included post-exertional malaise (PEM), a disabling fatigue that worsens after minor activity, and unrefreshing sleep, along with neurological and cognitive issues (like ‘brain fog’), autonomic nervous system dysfunctions, and sensitivities to light and noise. But I never gave up, and by using all the tools and knowledge from my scientific and spiritual background, I managed to recover.

At the beginning of this year, while turning sixty, after the umpteenth move from one country to another and too many related efforts, I had a breakdown. I thought it was because of one of the ‘usual’ virus awakenings (it happens when I’m tired beyond my limits), and I expected to recover. But this time, I started feeling that something was not coming back to ‘normal.’

The neurological symptoms were different and more intense. Besides the symptoms I used to experience in the past, I began experiencing numbness, tingling, blurred vision, sudden weakness, speech difficulties, and moments when my balance or movement coordination simply failed.

And pain. Pain spreading like fire through my body after the smallest effort, from walking more than fifteen minutes to cutting vegetables — and it seemed to last forever. On top of this, a very uncomfortable, peculiar pain, like the pain occurring after a powerful electric shock, started haunting my whole body even during my sleep, waking me up several times every night.

After many exams and a couple of MRIs, I found out that, this time, the symptoms had a structural cause, due to the shape that some of the vertebrae in my neck had taken.

I had known that osteoarthritis was already affecting the cervical tract of my spine since I was a teenager, because of the repetitive strain injury (that is, years of wear and tear and consequent chronic inflammation) caused by the irresponsible (or rather, unhinged) piano teacher I mentioned earlier, whom my parents trusted blindly. By undergoing his ‘training’, I involuntarily trained myself to endure despite the pain, and my pain threshold became so high that I stopped recognizing when it was too much. I normalized pain, and, with it, abuse, both emotional and physical — as if it were normal to ask too much of myself and carry more burdens than any other could bear. So, I already knew that since my 20s, my cervical vertebrae were already affected by bone spurs or, more precisely, osteophytes.

Osteophytes are bony outgrowths that form in response to chronic inflammation, wear and tear, or joint degeneration, especially in weight-bearing joints or in the spine. In other words, the body tries to stabilize and protect the overstressed area by producing extra bone.However, this natural repair process can lead to structural changes, such as the narrowing of the spinal canal and other nerve passages (stenosis), which may cause pain, numbness, and other neurological symptoms like the ones I was experiencing.

I knew that my neck situation could worsen with age, and over the years I had my neck checked several times, especially after whiplashes and other injuries. But I didn’t expect such a severe deterioration as the one I discovered a few months ago, following my breakdown.

The MRIs showed the presence of several stenoses in the cervical tract of my spine, one of which is particularly serious, serious enough to explain the intensity and persistence of this strange kind of post-electric-shock pain, especially at night, depending on the movements and position of my head and neck (not easy to control when you are asleep…).It also explained other symptoms affecting my hand coordination, fine motor control, and sensitivity, as well as some symptoms involving my brain and cognitive functions.

I was forced to drastically stop any activity and spend most of my time in bed, resting. Physiotherapy, osteopathy, and Structural Integration helped, as well as the constant practice of the Move In Mind method I had created to recover many years ago from other issues, and thanks to which I can still function, at least a few hours a day.

But even if I did my best to return to a ‘normal’ life, this time I realized I could not. I had to dramatically reduce my activities, otherwise I would live in constant pain, day and night. Three different kinds of pain visiting me all at once.This time, my ability to heal and recover completely seemed to have vanished.I don’t give up easily, but I spent days crying. It’s a grieving process, acknowledging my loss — a huge loss, to which I contributed because I pushed myself too much through many, many years.

But I decided to work on it, also with the help of a mentor therapist. And again, I learned a lot more about myself, and another level of healing started. Because healing happens in layers, or in coils, as a spiraling process that I described in the second edition of my book The Healing Attitude, which I updated during my recovery.

So, I surrendered to this huge change, but I didn’t let it get me down.I believe that we can learn from any health challenge, at least about ourselves, and so I kept practicing what I call the healing attitude, which I described in my book. And something very old resurfaced, something I never saw before, bringing me answers and a new sense of self. And so, a new stage of the ‘healing the healer’ process had begun.

With this, finally, after months spent exploring, testing myself, and experimenting, I had to accept that now I can live at 25%, compared to how I used to live only one year ago. But this is something — I mean, a win.Because I also found my strategy to live fully, meaning to live that 25% at 100%.

Instead of living my whole day in pain, feeling disabled full-time, I found a way to enjoy a few hours a day with all my bells and sparkles on, and then spend the rest of my time dealing with bearable pain while dedicating myself to self-care.This strategy is based on discipline — the discipline to ‘do’ much less and ‘be’ much more, listening to myself and preventing myself from doing too much. To me, this takes a lot of discipline, because I used to be a very active person, always oriented toward helping others and filling the gaps (meaning doing anything to lift burdens from others’ shoulders, metaphorically and practically speaking).To make it simpler, I transformed all my ‘doing around’ into ‘self-care first.’

Pain has become my teacher. I don’t like to call it ‘chronic.’ It would be chronic if it gave me no rest at all. But I realized that if I follow the new rules that my body gives me, I can live a few hours a day without pain, instead of living in constant pain as happened at the beginning of this year. Pain is my teacher, a reminder to take care of myself, first thing, every day.

I’m not trying to get rid of the pain — this is not what I mean by ‘healing.’ I’ve tried everything aligned with my physiological settings, from natural remedies to allopathic anti-inflammatories, for which I’m grateful when I fall into the trap of ‘doing too much’ again: it still happens, though much less than a few months ago, because I’m learning, so no more acute crises in the last week (I’m a slow learner, hahaha). But pills and supplements are just temporary patches for temporary relief.The key, for me, is developing new, functional habits.

I learned that I need to alternate standing or sitting with lying down, and go through stretching and relaxation many times a day. And yes, I’m lucky because part of my work is about dealing with gravity and teaching mindful movement, so I know how to do it.I am learning so many other things, about respect, boundaries, and care, and I know it’s a work in progress. The situation in my neck can’t change, but I can stop irritating and inflaming the area, meaning I can stop worsening. I can take it from here, and see how much in the future I can, maybe, improve. But any effort, even minimal, triggers the inflammation because the bones and cartilage are too damaged. So, constant self-care and minimal activity are my cure.

I am not saying all this to ask for advice or sympathy. I am just sharing what is going on with me to answer many questions I have been asked lately, and to clarify a couple of points.And, of course, I also hope that all this can be useful to others.

I am aware I suffer from what is called an invisible dynamic disability. I prefer to call it an invisible “dancing” disability — it suits me more.Invisible because from the outside I look fine, even ‘fantastic,’ as some told me. Dynamic (or dancing…) because my functioning changes from day to day, even from hour to hour, and most of the time it’s unpredictable, so it reminds me of my dance improvisations.

I’m finding a new balance. For now, I can be active two or three hours a day. The rest of my day has to be spent in self-care and rest.After my morning routine, if — and only if — I strictly follow the rules my body is giving me, I can rely on two to three hours in which my energy is 100%, with no pain.I know I have to use those hours wisely, indoors or outdoors. This means I usually have to choose between going for groceries, or cooking, or recording a video, or giving a session, or speaking with a friend or someone from my family, or writing part of a blog post. I might manage two of these things in a single day, but most days it’s only one. Or, in case it’s a video, I can record it one day, and edit it the day after. In the case of a blog post as long as this one connected to this video, it takes even a week to write it, because I have to stop writing after 20–30 minutes. For someone who used to sit, ‘channelling’ a whole book in a few weeks, writing ‘in the flow’ all day, this feels like a huge change (a torture at the beginning… because to put a stop to the flow of inspiration, and ‘split’ it over several days, feels like taming a dragon).

Every day, I have to schedule self-care first. In my weekly calendar, ‘me time’ comes before everything else. So I write it down in my daily agenda. Then I plan one main activity for the day, distribute many 30-minute spots dedicated to self-care (stretching, gentle movement, relaxation, power naps…), and some easy and light activities all around, like reading a book. And I know I have to stay open to changes, because I might have planned to do too much.

Even during the night, I have to manage my time.I know that I can only fall asleep if I follow the very first ‘wave’ of sleepiness, usually around 9:30 p.m., otherwise some neurological issues might prevent me from falling asleep. If I follow the ‘sleep wave,’ I may sleep three or even four hours in a row.Then, usually, pain wakes me — the kind of pain I experience because of gravity itself while my body is relaxed in bed: the whole-body post-electric-shock kind of unbearable pain, very peculiar, that invades every cell, bone, and organ, and feels as if someone were pouring molten metal inside of me.

When it happens, I have to perform some stretching and specific movements with my neck to feel better. After that, I may rest for another two or three hours. Rest, not sleep, because pain usually returns every twenty minutes, keeping me in a light, interrupted state. If I have been disciplined and avoided inflammation, I can be content with this ‘post-electric-shock pain’ that comes in waves during the night. It’s… peculiar, but compared to not sleeping at all because of more pain, it’s already a miracle.

If I want to attend a show or a meditation in the evening, I can’t plan anything for the following day. Going to bed later means spending the night dealing with that pain and other neurological symptoms, and the next day my body complains and my brain is foggy. But I know it, and I plan a full rest day.

If one day I physically do a bit too much, another layer and kind of pain might appear: a burning fire starting from my neck and spreading into every joint. This happens if I walk more than fifteen minutes, stand too long, or sit more than thirty minutes in a row. If I use my hands or arms too much — cutting vegetables, carrying even a light book for more than three minutes, or typing for more than twenty minutes at a time — I end up with excruciating pain in my neck and tendon pain in my hands and arms, the same pain I once endured as a pianist.

When it happens, I have to postpone anything I planned and just rest for a few days, taking care of myself.

So, this is what it takes for me to live two or three hours a day fully, at 100%.My time has become precious, as well as my health. I love to work, I love my work, it makes me feel happy and alive, and I only work when I feel 100% well. It means that a few hours a week I plan to work. And I am grateful I can do it — maybe even four to five hours a week.Of course, it cannot be bodywork anymore. But I enjoy teaching, giving sessions, and readings, and I have found that if I behave wisely, I can even teach movement, dance, Move In Mind, and lead workshops in person.

I discovered that I can even dance — mindfully, of course, because my dance style is based on self-awareness — so in small doses I can teach it, dance for myself, and even perform. I am currently working on a short comedy-dancing act. It takes forever, but it’s coming soon.

So, now that I have described what is going on, here are my suggestions to make our communication simpler and easier for me.

Please, avoid advising me or suggesting anything.I am well aware of what I can do and what can be done in my situation, on every level, and I have the best mentors and guides.

Instead of asking “How are you?” or “How do you feel?”, ask me “How are things going?” It’s much simpler for me to answer, and it will take less time and energy for me to answer.

Please stop saying to me, or to other people in similar situations, “…but you look fantastic!” That “but” ruins everything. Of course I (we) can look good. Beautiful. Fantastic. But don’t assume appearance means living one’s dream life. That “but” might feel like gaslighting, or like you don’t believe one can suffer from a disability and look great at the same time.

Please don’t remind me, or anybody else in a similar situation, that there are others suffering more. This is not a competition. Everyone is doing their best to survive their challenges. I know I’m lucky to be supported by trust, faith, and a husband who helps me as much as he can, and I know there are people who are in much worse situations than this, but this doesn’t bring any lightness.

I know that, for people in my situation, mental health can be a big issue. But here I’m really lucky, and so for me, please don’t worry about mood or mental health.I am an incurably constructive and creative individual. I trust Life. I have spiritual connections that would probably support me even if I were in seclusion. I always find something useful in any challenge, pain included. Inspiration is always alive in me and flows through me So, don’t worry, because the last thing I need is people around me getting anxious about me! Even when I can’t move, I still can pray, meditate, and contemplate for hours, and never feel bored. And I can listen to music.

Music supports me and makes me feel good, even physically. Once a month I do my best to attend a concert, even if the day after I need to rest the whole day. Live symphonic music is the best medicine — it makes every cell of my body dance with no effort from my side. A true blessing.I’m blessing more and more the Montreal Orchestra because it’s so close, and the National Arts Centre Orchestra of Ottawa, which allows me to watch free concerts in the video archive on their website.

If you want to do something constructive for me, just keep communicating the way you always did (except the “How are you?” that would need loooong explanations from me). I have never been a fan of small talk, and so now less than ever, because I prefer to spend my energy talking about something constructive, so don’t expect to chat about the Canadian weather!

If you want to support me, write a review of one of the books I wrote that you loved.

Suggest it to a friend who could find it useful.

If you took one of my online courses and found it useful, suggest it to someone who needs it.

If you found my videos or blog posts interesting or useful, keep sharing them.

If a reading or any other kind of session with me helped you, tell those who resonate with my work. I’m very selective, but happily open to working some hours a week.

And, of course, if you find anything I share useful, you can buy me a coffee or a tea (here is a link to do so, even if we don't live close to each other :) https://buymeacoffee.com/monica.canducci

So, yes, now I am living at 25% compared to a year ago. But if I follow the new rules, that 25% feels and is 100% alive.

It’s like Chiron’s wound. I am learning to care for myself, to honor my needs, and to prune away everything not respectful of me. In doing so, even living with an invisible and ‘dancing’ disability, I feel paradoxically more complete than ever. Those who are working with me lately say my guidance is even more effective now, probably because inspiration flows stronger than ever, with me being less distracted by doing too much.

I feel blessed for all the spiritual and healing connections in my life, and for having cultivated the Healing Attitude, which has become part of my self-care practice.

In case you are interested in the book, you can find it here: https://www.amazon.com/dp/B0FK3SCMS5

No matter what I’ve lost in terms of functioning, I am gaining awareness, depth, and presence. This feels like the gift within the challenge right now: the art of living fully, despite any circumstance. Thank you.

An Invisible, Dynamic Disability

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