The Big Change Up
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As the nurse inserted the needle into my son, William’s, left arm, 10 years of fear surged into my throat. I breathed and let my fear rattle on, without pushing it away or exaggerating it. I am always amazed at how conscious breathing helps me function, even while anxiety lurks.
William was born with a life-threatening allergy to gluten, wheat, and most grains. Yes, in 2014 the gluten-free food market is booming, but imagine 10 years ago when no one knew what gluten was. If you have spent any time around babies and toddlers, you can imagine trying to keep William safe around floors littered with Cheerios.
I was constantly washing wheat-laden goo from playground swings, slides and shared toys. I relentlessly fended off well-meaning friends, doctors, and shop owners who offered William pretzels, lollypops, and cookies. I have become very skilled in scrutinizing every label of every product that passes his lips or touches his skin, calling company after company for ingredient and product safety confirmation and interrogating waiters, cooks, and restaurant managers. And forget about traveling; it is just plain terrifying to go too far from home where we don’t have relationships regarding food and care.
So far we have managed. Only three trips to the emergency room for a gluten poisoning.
Now, here we are: in the hospital preparing to purposely induce an anaphylaxis reaction in William. Yes, I said purposely.
William is one of 40 people worldwide participating in a clinical research study (through Mt. Sinai, John Hopkins, Stanford, and Children’s Levine Hospital Chicago) to develop a treatment intended to reduce the severity of an anaphylaxis reaction to wheat using an oral immunology therapy.
The first step is to see how much wheat will cause William to have an allergic reaction. So here we are, with William lying in his hospital bed, surrounded by emergency equipment and an IV in his arm. Feelings of regret are bubbling up in me and I am seconding guessing this decision. I'm thinking, Do we really need to change? We have got this allergy thing down.
But I quickly remember.
With the constant threat of accidental ingestion it is a dream to think that William could go out into the world more safely without us hovering over him. He is now in 5th grade and preparing for overnight school trips, sleepovers, and opportunities to go further and further from home. I know in the blink of an eye, he will find himself on a late night trip to the diner with friends to satisfy "the munchies." I constantly (secretly) harbor the fear of an emergency situation like Hurricane Sandy and ending up in a shelter where the only food available is bursting with gluten.
With the IV firmly in his vein, William begins to ingest his first 3mg’s of wheat mixed into a velvety chocolate carrier (which he savors like a sugar addict). I take a very deep breath. I am clear, no matter how scared I feel, this is an amazing opportunity. And, while there is no promise of a specific outcome, we have faith that we are doing the right thing. As Martin Luther King Jr. inspires, “Faith is taking the first step even when you can’t see the whole staircase.”
So we move forward, one step at a time.
In fact, that is actually how the research study is strategized: microscopic amounts of wheat are ingested daily, progressively upping his dose every two weeks, for two whole years. (Or if you ask my family they would say the study was actually for 24 months, 104 weeks, 730 days, 17,520 hours.) The theory is that with very slow, gradual, ongoing steps – William’s body will accept, integrate, and sustain the changes.
And this is how we move forward through change; one day at a time, one step at a time, one breath at a time, one milligram at a time.
It feels auspicious to begin this new chapter with the onset of spring. This season is a master of change--Its winds sweeping the earth clean, its rains tilling the soil, its sun nourishing the growth. And with April’s blooms popping up on my lawn, I am feeling super optimistic for today and for the future.
This month, in each Yogalicious blog, I will share encouragement, inspirations, and practices to help you renew along with the transformation of spring or through any new transition.
May we all remember that:
"We must always change, renew, rejuvenate ourselves; otherwise we harden."
-Johann Wolfgang von Goethe
With Great Warmth!
Jillian
William 101: But what about when we don’t want to "go a-changin’"?
“All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.”
The Wheat Immunology Program we are now entered in demands that William ingest what has been known to endanger him for his whole life. And while I fear for his safety, William’s fears are different. For the past 10 years he has grown comfortable, even celebratory of his identity as the “Gluten-Free Boy." He loves shopping for new gluten-free goodies, meeting gluten-free cooks and experts, going to gluten-free gatherings, and feeling part of the gluten-free community.
He also has come to appreciate the extra care and attention he receives in most food environments; his friends have always been interested in what he’s eating as it is different (and often looks really good thanks to this Mom!) and his teachers and other adults work hard to help keep him safe. He has a sense of identity, belonging, and specialness he has known since birth.
William expressed his apprehension with sadness and concern, “I don’t want to loose my ‘William-ness’…. Who will I be? I like being the Gluten Free Boy. It’s who I am.”
As we learn on any path of self-discovery, all change - even a change for the better - can be accompanied by downsides and distresses. We don’t know if we’ll like the ‘new’. We resist it, feel sad, nostalgic, anxious or even angry right up to the precipice. But once we cross the threshold, we realize we’re more ready for change than we thought.
And so it goes….
Now four days into Hospital visits, we are finding ourselves thinking more about the present than the past. We are absorbed in strategizing our new daily schedule as William’s treatment requires him, each day, upon taking his ‘medicine’ to stop all exercise and relax for two hours while his body metabolizes the wheat.
And, thankfully, William has seemed to switch his focus from loosing his identity to creating a list of the first wheat-foods he may be able to indulge in. Dare I tell you that a NYC Dirty Water Dog is way up on the list? (He is his father’s son.)
Need More Help Letting Go? Read this Great Yogic Myth.
Long ago, a wise Yogi was walking down a road. From off in the distance, he heard a terrible moaning and groaning. As he hurried to give aid, the cries of pain grew stronger. He came upon a man hugging a huge thorn bush, his face and arms scratched and bleeding.
"Help me, help me," cried the man.
"My son," said the yogi, "I have a solution for you ... Let go of the thorn bush."
Slowly the man removed first one arm. Then the other. Finally, with the wise man's suggestion, he was able to step back from the thorn bush. The man smiled.
"I feel great!," he told the yogi, "thank you."
But in the next moment, a wave of uneasiness overcame the man. He narrowed his eyes and looked at the Yogi with suspicion. "You can't have it! This is my thorn bush!" And he grasped the bush even harder than before.
The yogi shrugged his shoulders and silently blessed the man as he walked down the road, the cries of agony fading into the distance.
Free Your Mind and Your Spirit: A Home Practice
Spring is the opportunity to shed unhelpful patterns and discard energies and ideas that no longer fit us. Take some time and think about what's weighing you down.
Sit down with your journal and jot down a few things that come to your mind. (i.e., fear, guilt, negative self-view). Do not get hung up in the process; write whatever comes.
Then review your list. For each item ask, am I willing to let go of this? Relax and breath through your answers. See what is truly reasonable.
Now is the time to plant your "seeds." Ask yourself, What are my goals, dreams, and aspirations? What do I want to harvest?
Remember think small! Set easy, doable goals, integrate them one step at a time. So you have every chance of success - to integrate and sustain all the new habits you are creating, or letting go of.
