Spotlight: Stories of Resillience

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By NATALIE MARNICA

Unvanquished: How one at-risk woman said “No” to accepting chronic pain… and is helping others live more vital lives.

St. Francis of Assisi counsels us to pray for the serenity to accept what cannot be changed and the courage to change what we can change. The catch, of course, is in the final phrase, and who among us doesn’t feel they miss the “wisdom to know the difference” mark as much as we hit it? For one 23 year old Torontonian, acceptance didn’t even make it to the table, even though the perfect storm of HD family crises and a serious car accident plunged her into a physical and emotional gully. To most, “wisdom” might have meant accepting a greatly diminished existence, with a dismissive “What is, is.” This young woman not only chose to climb out of the gully, but she fought for a most vital kind of life — one without pain. What’s more, she made the trip there without a roadmap. In her words, here is the story of an extraordinary women who, at 35, is living richly, and enabling others in HD families to live with less fear, less pain, and better prospects. Meet Natalie Marnica.

My HD Family

I live in an HD family. My grandfather had HD and my mother has HD. I have been caregiver to both. Several others in my family also have HD. I also spent over a decade in fear that I had inherited the gene. I found out I didn’t, but that didn’t change things nearly as much as some people might believe. When people talk about their testing fears, I always go back to saying, I understand that it’s a bleak diagnosis, but you really don’t know how a positive test result will affect you. Why does somebody with a 42 CAG get sick at 40, and another person with the same number not show symptoms until they are 70, or maybe never? What I have grown to care about is influencing some really key things, epigenetic changes that take place because of what is going on in someone’s lifestyle day-today that may affect onset down the road. How do we make the onset as late as we can? How long do you want to move your body? How long do you want to be able to do things? There isn’t much research on this, but through advanced imaging technologies, in particular, we are learning more and more about how the brain responds to what we do, mentally and physically. Most people will have had something else pretty challenging by the time they’re in their 60’s, 70’s or 80’s. Stroke, diabetes, arthritis, depression. We don’t get out of this world unscathed. I don’t mean to minimize this horrific disease, but it’s possible you might find you end up better off than than most people, if you start to work now. I fought hard for this outlook, starting before I knew my number.

Life in the Gully

From the time I was 18, I was sharing a caregiving role with my aunt, one that absorbed my time when I wasn’t working my two part-time jobs — construction and babysitting. My aunt and I took shifts looking after my grandfather. I lived closer, so I would check in, take Grandad out for smokes, make sure he was eating, and just hang with him to provide company. My mother had been diagnosed with HD in 2012, when I was 21, and she was beginning to be symptomatic. My memories are of these years are of living in fear, fumbling through a caregiving role with Grandad, and having the dawning realization that this wouldn’t end, that it would go on with me caring for my mom. During this time, I was really angry and sad. I had lost my mother, for all intents and purposes. When her behaviors became erratic, I wasn’t sure what was her and what was the disease. All those behavioral issues that come up are exhausting to deal with. Once you adjust to a behavior pattern, a new thing would come up to throw things out of whack. Plus, when I couldn’t be at home all the time, I worried that she might choke or something. It made being away from home nothing but stressful.

I took up kickboxing to channel my anger and get much-needed exercise. That all ended abruptly when a car rear-ended me one day in 2008. No bones broke, but there was extensive soft tissue damage to my neck, right shoulder and upper back. The pain was excruciating. When you have this kind of pain, it’s not like you hurt in a certain area and everywhere else is fine. The pain becomes all you know. The insurance company was denying my claims, my mom was getting sicker. I had more and more responsibility and no time to devote to a real job. Over the next many months, I tried many things for the pain — accupuncture, massage therapy and physiotherapy — all without any real resolution to the problem. I would get slightly better, but then just carrying my groceries would cause a severe flare-up. It’s very hard to be told by a doctor that you’re always going to have pain. 

They said to me, “We don’t know what’s causing your pain, and we don’t have a cure for chronic pain. So it’s something you have to live with.” I thought, I’m 25 years old I don’t think you understand what that prognosis looks like! I felt like a failure being given this verdict. One of the hardest things of all is the depression that inevitably sets in when all your efforts lead to nothing. Worse, I had lost the love of my life over this. I did not know my status at that point, but felt sure I would test positive for HD, and I didn’t want him to have to take care of me. But I made a decision that I wasn’t going to just accept this, and I was going to focus not just on my body, but on fixing my brain. I’m was going to do everything I could. I became relentless.

The Climb Up

I was trying more and more things, adding cold therapy, exercises, injections, and drugs, laser therapy, MD’s, chiropractors and naturopathic practitioners to what I had done before. Then I finally found one naturopath who helped me get a little bit better. Though this gave me some relief, my aunt ultimately offered the most pivotal opportunity in my climb out from pain and depression: a simple invitation to go with her to a hot yoga class. I remember the studio was so hot and humid I felt like I was going to pass out. My body was not cooperating. But l stuck with it for a month, and just kept doing my best to move in all the ways I still could — and in some ways I’d never tried. I was always inflexible, even as a child, so it was tough. After awhile, though, I started to notice the pain reducing throughout my body. I thought it was a miracle. My neck moved better and my arms were getting stronger. 

For the first time I had real hope that my life could be better, and I set out with renewed determination to heal. I practiced yoga almost every day for a year. Then my body really changed. I started to have certain strengths and a different level of mobility. I wanted more, so I really worked to understand how I could fix myself. Even though I got significantly better, there was still so much unresolved pain — mentally, physically, emotionally. Why was it that some days I wanted to die and other days I didn’t? I was always experimenting, and when one door would kind of close or I would hit the peak in a particular method, I would pivot and go to something else. I was picking away at the problems from one angle — the physical — because it was the most palpable, the easiest to address. Then I got into the psychological stuff, because I learned that the problem with pain is not just in the body. 

I listened to Lorimer Moseley’s TED talk on pain and the brain, and that gave me a springboard to action. I understood that there was something in my brain that is causing pain signals, and there’s something in the tissues that is not healing because of these signals. It took a lot of research on pain and talking with people who are in pain, for me to find my way out. Over the next five-year period, I did cognitive behavioral therapy and other things that focused on the brain, along with my yoga and other therapies. I knew that if my body’s messed up my brain’s messed up, so I tried intermittent fasting, a gluten-free diet, a sugar-free diet. I learned about all the joint reaction forces that are playing into force and gravity. To address chronic pain requires this kind a multi-pronged approach. 

Besides yoga, I started using three to five pound club bells for strength training, strengthening the muscles around my rotator cuff, getting the strain off my neck. When I started using these, I knew that my body would have an adverse reaction because it always does — I was used to flare-ups. So I started to shock my brain with cold therapy. I was doing cold showers, ice baths, cryotherapy that whole year that I started the strength training, to try and change the way my body was able to adapt to stress. I replaced my pillow with a small neck support, and worked on getting my head from being forward to coming back in space, strengthening along my backline.

Negotiating a New Foothold

might always have setbacks. You feel a little bit better, and then you may overdo, tax the body, and you have pain. So you’re always in negotiation. When you finally became pain-free, it is weird. You kind of wait for the other shoe to drop. The first time I was out of pain it lasted three months; then I had a flare-up, and it was awful. I had forgotten how much pain I had been in. I thought I was free, and then I wasn’t free, so it was a really big setback. Then I went another few months without a flareup, then four to six months, and I realized, oh, my flare-ups are getting farther apart, and they aren’t lasting as long! So I’m doing something right. So that’s success! 

Despite losing the man I loved, my friendships over this period deepened. One friend in particular took up the challenge of being in my corner and truly “walking the walk.” She went with me to all my pain appointments, she was there for all my injections. I learned that all it takes is one saintly friend to keep life worth living. To this day, this best friend, my spiritual teachers and my yoga teachers all help me.

Yoga Practice in My Recovery

I continue to do cold therapy, strength training, and high-intensity interval training (HIIT) to keep pain at bay and make me stronger physically and mentally. I can truly say, though, that the practice of yoga was the single biggest factor in my healing. Without it, I question whether I would have recovered, even as determined as I was to not live a compromised life. The yoga practice began to work on my mind as well as my body. It became the ground under my feet, something I could do to cope with what was happening inside my body from the stress of the world — it would always help me find my footing. 

I began to understand a little bit more of how the mind perceives reality, the role of the mind in suffering — a lot of people don’t realize how powerful it is. Although pain is something we all experience, we don’t all experience it the same way. Not all of us are subject to chronic pain, and one of its main precursors — depression — can make it so much worse. I’ve always had issues with mental health, so for me frequent suicidal ideation was normal. I struggled, and still do at times, with very negative inner dialogue. I did not enjoy that person who was always angry. It’s so taxing being angry! Movement and meditation has given me the ability to reduce a significant amount of suffering. It enables me to notice what I’m experiencing, and gives me the space to contemplate situations as they come and decide on a response. For reasons that are still being studied, all this has a strong influence on our brains and pain.

With movement and meditation, you begin to question yourself, your thoughts, as you watch them fluctuate. Is it the truth or is it just like another repetitive thought that goes through my mind? Can I just leave the thought there, not resisting or running from it, but just witnessing it? Can I say, “Okay, I see you,” without attaching to it? On a personal level, it’s about finding that still heart point that is always there, but we can’t hear it over the noise of the mind. With practice, you become connected to yourself, to your soul, your source, that part of you that is the essence of what you are, yet — paradoxically — is ever-changing.

Reaching Out to Others

I needed yoga and meditation to help me pass through the physical and mental pain. It was like a rite of passage that led me to where I am now, which is generally a happy place. The next step for me was to share this with others. So this is why I do lots of education. I’m happy that I relieved the pain in my own body and mind, but if I can’t help anybody else do it, then really what was it for? This is why I have spent the last six years volunteering with the various organizations including the Huntington’s Society of Canada and the Huntington’s Disease Youth Organization (HDYO). I am currently the Toronto chapter president and help with raising awareness and funds in Canada. I have been a camp counselor and the resident yoga teacher for the HDYO North American camps for the past three years. I’m also a mentor in the Young People Affected by Huntington Disease (YPAHD) mentorship program.

I’ve flown to the last two Huntington Society of Canada (HSC) national conferences to do in-person workshops on yoga as therapy for people with HD and for caregiving support groups, and I do group and one-on-one sessions online. I began volunteering with HSC in 2015. I was invited as a speaker at their conferences and presented Yoga as Therapy. Later I tailored this program for caregivers. I helped with the Young People Affected by Huntington Disease (YPAHD) races, doing race warm-ups and other volunteer activities. This summer, I collaborated with the HDYO to create a whole YouTube series for people affected by HD, called “Yoga for HD!” I was so honoured to be able to share these practices with the global HD community. Yoga is also my living now, and I do okay! I first went on to train as a yoga therapist, and then to teacher trainings. This is a role where you really start to understand yoga philosophy because, of course, to teach something requires you to dissect it and reassemble it until it is clear in your own mind. Because I’ve been through all-encompassing pain, there’s a lot I have learned. I think that can help people not have to learn all those lessons themselves through hard experience. Sometimes you can just learn from someone else’s struggles and discoveries. I also want to really show people that you can go through some of the darkest nights, and come out the other side.

Sacred Mountain Yoga

I’ve always been awe-struck of mountains. The Sacred Mountain name for my yoga business came to me during a meditation and dharma talk at my first teacher training. I was living in a tent on the beach with several other teachers-in-training from around the world. Mountains are places where people who seek refuge and healing. They are symbolic to me of overcoming obstacles, discovering more of what you are — or what you’re made of. They remind me how insignificant I am, in a good way. They were there millions of years before me and will be, millions of years after…it’s humbling. As I state on my website, Sacred Mountain Yoga was created with the intent of making yoga practices simple and accessible for people with people with limited mobility, injuries or working through other health issues. I currently teach students of all ages. My goal is to help people feel better. We utilize breathing and movements in a way that is simple and accessible — with special programs for people with limited mobility. COVID has required me to do more of my teaching online, of course, but I love it. It’s opened me up to a lot more things, so I plan to keep it up for a long time to come. I will still be teaching in-person, but I’m going to focus on building a full virtual studio so I have a big library of classes that are recorded and available.

Yoga for HD Programming

The number one thing for me right now is getting my Chair Yoga and Mobility training off the ground into the virtual world, because I was teaching it live before COVID. This is an important way to help movement teachers and professionals develop ways to help many people with severe mobility limitations, including those with HD, reduce suffering. I want to offer it globally. I’ve been doing a lot of work with some HD groups. Through the work I’ve been doing at HDYO, I have been contacted by about four or five ataxia support groups in the states. They seem to really gravitate towards the program, because there are not that many direct online support tools for HD.

When I’m educating people with HD about why they should move and meditate, our goals are:

  • To reduce the effects of chronic stress on their brains and immune system. 
  • To maintain their current health and mobility. I tell them it is because you’re trying to keep what you already have. It’s easier to keep what you already have than it is to regain it once it’s lost. That can be applied to your physical and cognitive abilities.
  • To walk, lift weights, exercise, breathe deeply, do yoga, meditate, for increasingly longer periods.

People can start with one of our “Yoga for HD” videos, or they can start with a webinar like the two we have online: one that explains why and how we are using yoga as therapy, and one for caregivers, educating them on how they can reverse or prevent burnout. There is a whole series of videos people can jump into, whether it’s “Chair Yoga and Mobility for HD” or functional yoga that involves standing work. All are available on the HDYO YouTube page.

A Peek Behind the HD Yoga Therapy

The benefits of yoga and meditation go back to all the struggles I went through. They impact the brain and impact stress levels, and stress impacts your overall health. So maybe you are HD positive, but you don’t have that many symptoms. That doesn’t mean you’re not going to get some other autoimmune stress-related condition that’s somewhere else in your genome. The impact of chronic stress is a factor in whether those things flare up. So how can we, in real time, support those parts of your brain that are going to be prone to degeneration, how do we keep them active, how do we keep the neurons wired and firing together in ways that are positive? Through my webinars, we talk about the answers and why we are doing what we are doing. We know from MRIs that the brain looks different before and after yoga and meditation. That isn’t debatable. Whether you have HD or not, you’re going to have an age-related decline. Your brain will shrink if left to its own devices. 

So we do things to try to keep our brains, our motor control system that runs the whole ship, as healthy as possible. Movement is really key for brain function. So I take current research and I apply it with this lens, where I’m looking at the areas of your brain that are prone to degeneration, and using or designing physical and cognitive exercises that help with those areas of brain. The goal is to take away some of the extra burden of stress in your body, so that you’re not adding fuel to the fire that is HD. How many years did it take for acupuncture to be a modality that was trusted? Then people said oh all those crazy yogis that are telling you that meditation is going make you happy. Well, now MRIs show meditation can lead to growth in the front of your prefrontal cortex. Science is starting to catch up. I think we just have to let the course run itself. Even if it’s a bad day, I still feel better than when I started, because I’m regulating my breath. Breathing deeper, we’re stimulating things that are unseen. People don’t realize that the organs also need to have movement. They always think about muscles and bones, but don’t think their organs need some stimulation, and we don’t think about our lymphatic system. We have known there was wisdom in going outside, getting fresh air, running, playing and dancing. Yoga is a more systemic, more systematic, and more thorough approach to the same ends.

Helping HD Youth

Eventually, I am hoping to have a training program for young people. That was my biggest goal — to get people who tested positive and are non-symptomatic to train properly, starting young, like at 17, 18, 19 or 20. If you adopt these habits and these practices now, if you are maintaining your brain, how might that change the slope of the decline if HD manifests? I’m looking at all the barriers that would stop people from participating in these programs and asking how can we maximize your quality of life. The message is, how can we prevent as much decline as possible? Cognitive capacity is very hard to regain once you lose it. You want to keep as much of your faculty of reasoning, all the parts of your brain that are really, really useful in decision-making. You want to keep your autonomy as long as possible. I get to connect with a lot of young people through these HDYO camps in particular. 

I remember one particular camper who was diagnosed as positive at a very young age. She was struggling with mental health issues and addiction. I opened up to her about a time when I used when I used substances out of desperation. She was in some of my yoga and meditation classes, so we talked about the space between thoughts, and why that’s important, particularly when it came to decisions that have permanent consequences. And so a year or two later after that conversation she sent me a message telling me that since that day of our talk, she had been practicing yoga ever since. These things are what make me happiest.

Reflections

HD families are typically buried in pain, whether you personally test positive or not. How many years of generational trauma does my lineage have to bear? How many years have they not had the any supports? Not long ago, people with HD were sterilized and put into “crazy houses.” They were put in prison. They were ostracized, they were disowned from their families. They died horribly. We have a lot of healing to do for these lineages, and I think people don’t realize that, even from a genetic perspective. If your mother’s stressed when she’s pregnant with you, your ability to adapt to stress is going to be dampened. This is proven in rat studies. So, think about my mom. She was scared for herself when she was pregnant. I was kid number three. Her dad was sick. My grandma wasn’t taking care of him, our cousins were sick, everybody in the family was going through turmoil. Then you have three kids on top of that that might be at risk for this disease. This was before 1994. No testing was yet available. No supports. 

I don’t blame my mom for anything. She did the best she could with what she had. Now, thankfully, we have all these resources for her. This issue of HD Insights unveils disparities in care and tells the heartbreaking story of many HD communities suffering in poverty and with sparce resources. Still, I hope the new generation of people affected by HD understand that the future looks brighter than it has at any time in the past. In many places, we have more support workers and we have better education on HD. There is neuroscience working for all HD families, with many therapies in the pipeline, near-term and farther out. This is the best time to be alive, even with HD.

 

   

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