Our Battle with a Rare Disease & How Yoga has Helped. ~ Deb Purcell

Via Deb Purcell
on Sep 21, 2013
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Photo: Jade Beall
Photo: Jade Beall

I have three kids.

Enough said? Just kidding … there’s a bit more to the story.

Back in 2006, when my first child Trey was 23 months old, he began the diagnosis process for a progressive and rare difference (I dislike the word disease—it makes Trey seem like someone you want to avoid, instead of the fabulous and friendly life lover I know) called MPS II or Hunter Syndrome.

One moment we had Trey, our perfect typical toddler, and the next moment we had something foreign and incomprehensible that apparently was part of Trey.

We were told Trey’s hands would curl, his facial features would coarsen, his joints would stiffen, his airways would narrow, his heart would begin to fail, possible cognitive decline leading to a vegetative state, definitive early death.

We were blindsided and I didn’t know how to move on, how to live. I kept having these visions of buying a cabin deep in the woods and huddling with Trey in the corner of the cabin until he died.

But somehow, life went on; it still feels like a disconnect. I don’t really know how I went on, aside from the fact that my heart kept pumping and my body kept breathing.

Trey and his three-month old brother Avery still needed to eat, go to the playground, wrestle, read, live, but I wasn’t really there.

For years I felt compelled to take photos and video of everything Trey did, so that Avery would remember what his brother was like before he regressed and couldn’t talk or walk or eat or sleep or smile or live anymore.

I was tortured.

Life also went on with loads of tests (which lead to test results and sometimes paralyzing, nauseating and convulsive anxiety and fear). Cardiology, otolaryngology, rheumatology, ophthalmology, orthopedic, plastic, general and neurosurgery, genetics, sleep clinics, biochemical disease—and I know I’m forgetting some department.

That’s in addition to weekly intravenous enzyme replacement therapy infusions, monthly intrathecal infusions in North Carolina (Trey’s part of a clinical trial down there), and weekly speech therapy, occupational therapy, physiotherapy and therapeutic horse back riding.

When the news was good, I recovered quicker from the anticipation that comes with every test, but when the news was bad, my mind ran away and I lived up in my head for days to weeks before I could find enough solid ground to come back to earth again.

 I come from a glass-half full family and like to think of myself as a positive person.

Even when the news was bad, I worked to find the positive, I worked my way from the terror in my mind back to the here and now, which was usually watching my kids dig in the dirt, feed squirrels, get smoothie all over their faces, splash in the bath or ride their bikes.

The problem with a progressive disease though, is that you don’t get much of a break. There wouldn’t be much time between one test result and another, so I spent most of my life processing bad news. I didn’t spend much time living.

When I first found yoga in 2010, it was a break from my life. I knew I could go there and let go. Either I was following my breath, feeling the burn in my thighs as I sat in warrior two or chair pose or concentrating on not falling out of my arm balance. It was a break from my mind, from the intensity of life. It was my escape.

Two years ago, Trey qualified for a clinical trial at the University of North Carolina that puts the enzyme he is missing directly into his central nervous system and brain. Almost instantly, life got a heck of a lot easier.

It’s still a lot more intense and different than families who don’t live with a progressive disease, but Trey basically stopped dying. I still don’t take anything for granted; Trey is relying on all sorts of factors to stay alive and I’ve learned that we never know what tomorrow will bring, but right now I’m breathing a little easier.

With this newfound ability to take deep breaths and face my demons, which aren’t nearly as scary as they were before Trey qualified for this trial, I am learning to live with impermanence.

When I first began to meditate and I learned about the Buddha and enlightenment (freedom from suffering), I learned that one of the reasons we suffer is because of attachment. We are attached to things or beings that are impermanent.

For instance, Trey. Yes, I’m attached. No, I cannot let go. Therefore, I will never be enlightened. I wondered (and still wonder if any mothers’) have ever been enlightened?

When I brought this up with my teachers, they suggested baby steps. Don’t jump in the deep end when you don’t know how to swim. They also suggested practicing now, when life is easier, so that when life gets hard, as it most definitely will, I will have some skills, such as mind control skills.

So that’s what I’m doing. While I’ve given up on enlightenment because I will always be attached to my kids, I meditate and I practice yoga. Those two practices together have given me the ability to catch my mind when it’s playing on repeat or getting anxious, frustrated, envious, judgemental about something or someone.

It feels really good. I am less angry, I am more patient, I have more compassion, I make better decisions.  I am much calmer. Life isn’t as overwhelming anymore. It’s not as much of a roller coaster.

Given that change is the only constant in life, I figure I better start learning to work with that reality instead of fighting it.

That’s the extended version of why yoga works for me.

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Assistant Ed: Bruce Casteel/Ed: Bryonie Wise




About Deb Purcell

Deb Purcell is a life-learning mum, rare disease advocate and yogi. You can visit her website to follow her yoga path and this website to follow their family’s journey with MPS II/Hunter Syndrome.


13 Responses to “Our Battle with a Rare Disease & How Yoga has Helped. ~ Deb Purcell”

  1. Rene says:

    My wife has been diagnosed with Grave disease. The medication does not seem to be doing anything to help her with GD symptoms. She felt depressed. This is taken a told on both of us. I feel that I can’t do anything about it. I hate it. My wife started practicing Yoga again, and she says she feels much better after a Yoga class. So we are adding Yoga to our lives. Thank you for sharing the article about this brave lady and her son. It is uplifting!!:)

  2. Ryan Purcell says:

    Beautiful Deb! You sure can write.

    Love Me

  3. Christel says:

    Over the summer I tried to do a meditation class. I guess I wasnt all there to accept either. Just Thursday we found mps3a Sanfilippo Syndrome in our path. What gets you in the mind set to do something for yourself. To spend time on just you? Im still hurting to have answers and to get everything and anything together. Thanks for sharing.

  4. Krista Purcell says:

    Deb. you bring me to tears every time I read something you write. You are an amazing mom who gives everything to your kids. I am so gla you have found something that brings you so much fulfillment and happiness.

  5. Karen P. says:

    Deb, you're an amazing mother and I am very happy that you found yoga. It will help you through many trials. Thanks for sharing your story with all of us.

  6. To be present with the disease and with yourself will give you the ability to "look past yourself" ~me and deliver the quality of care needed for your child to continue to thrive and live a high quality of life. Yogi's walk with both death and life and feel and experience the fragility of life. Wishing you strength and presence, You don't need permission from any teacher as to how far you can go in regards to enlightenment because it already exists within you. We are the greatest teachers of ourselves. Check out works by Ramana Maharshi and Sri Nisgardatta Maharaj.

  7. Ilse Cehak says:

    Deb, we are so proud of you, nothing holds you back, when you fight for well being of your kids. Your yoga experience is giving you additional strength. Keep going ! Love Omi & Vicki.

  8. Kaffirlily says:

    "Yes, I’m attached. No, I cannot let go. Therefore, I will never be enlightened. I wondered (and still wonder if any mothers’) have ever been enlightened?"

    That, right there. It holds true for daughters, too. I rediscovered yoga and meditation while my mother was dying. It took a long time, and we both went through a lot of pain and heartache before her poor ravaged body finally gave out this last June. Thank goodness for yoga and meditation! The pain is still intense, and often takes my breath away, but with the help of those two tools, I am coping. But yes, I am still attached; and no, I'm not sure I can let go.

    My heart goes out to you, and I wish you courage and strength.

  9. Deb Purcell says:

    Hi Christel,

    My answer to your question? When you're ready. Some days I don't want to drag my butt out of bed or talk to my neighbors and that's okay. I didn't go to yoga to heal or do anything for my mind, I went to it initially to get back in shape! It was the clearing of my mind though-the sanity- that kept me coming back to my mat. Now I go there when I want answers but don't have them, can't get them, and just need to let go and stop thinking for a bit, to calm my crazy mind!

    I think the path through diagnosis is different for everyone, even within the same difference. Personally it took hitting rock bottom, and sitting there for a while, to eventually get back up. MPS is a tough hit. Gentleness with ourselves is the only way to go.

    If you ever want to get in touch with me about MPS or otherwise, you can connect with me via my websites: http://www.treypurcell.com or http://www.debpurcell.ca.

    In solidarity,

  10. Deb Purcell says:

    Interesting, I have 'I Am That' in my library at home, I just haven't read it yet. I'll put it next on my list, thanks for the recommendations! I'll definitely check out Ramana Maharshi as well.

  11. otionblog says:

    Thank you for sharing your experience. How wonderful that yoga has helped you to find some peace. I have also thought a lot about enlightenment and attachment, and, while I don't have kids, I have decided that I don't want to give up being attached to my loved ones. I think your question about whether a mother has ever been enlightened, is a very poignant one. Congratulations on your insight, courage and optimism.

  12. Kiri says:

    Non attachment doesn't mean that you don't love them, it means allowing yourself to be fully immersed in the present moment without resistance. In fact I find that being present and not attaching allows me to love my son even more because I can allow space for him to show me who he is instead of controling or projecting onto him. Just know that you have a larger self, your buddha nature that is part of the universe and your son does too so you will always be together. You are allowed to feel sad and grieve and rage about what is happening that's what your small self does and you can soften into those feelings and hold them with compassion. Both parts of yourself are equally valid.

  13. A while back I read a quote that said, " before enlightenment I chopped wood and carried water. After enlightenment I chopped wood and carried water." you can care for your children and family and still aspire and work at reaching higher states. We always set limits, give diagnosis etc but in truth there are no limits and diagnoses are as much a death sentence as being born healthy. No doctor knows how long someone will live or what their quality of life will be that is up to you and your child. I understand how you are feeling and really the toughest part of this journey is probably dealing with indifferent people. "The opposite of compassion is indifference." Dr. Bolen Another quote that really holds true for me and inspires me to be effectively compassionate is, “It is not enough to be compassionate. You must act…………….When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved.” – The Fourteenth Dalai Lama What people need as caregivers, or with a challenge, or even overwhelmed parents of regular children is actual help not just words. Words don't help anyone but action does.