September 21, 2013

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

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



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Deb Purcell