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How I'm Too Often Like Simba When It Comes to My Celiac Disease

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“So prepare for the coup of the century,
Be prepared for the murkiest scam.
Meticulous planning,
Tenacity spanning,
Decades of denial
Is simply why I’ll
Be king undisputed.
Respected, saluted,
And seen for the wonder I am.
Yes, my teeth and ambitions are bared.
Be prepared!
Yes, our teeth and ambitions are bared.
Be prepared!”

“Be Prepared” by Elton John and Tim Rice

When my children were little they both adored the Disney movie “Lion King.” We watched the DVD countless times, but every time Scar’s song “Be Prepared” caused a small shiver to run down my back. I knew that the lion cub Simba was blissfully unaware that Scar was planning to kill both Simba and his father. I wanted to run to Simba and shout, “Stop! Watch out for Uncle Scar!” Every time Simba ignores the dangers of the open lands. He almost gets killed by Scar.

As someone with chronic conditions, I am too often like Simba. I go into the everyday environment blissfully unaware. I deny the reality that it is set up to hurt me unless I am prepared.

In April my husband and I volunteered for the Heritage Golf Tournament at Hilton Head Island, South Carolina. This was my third year volunteering so I thought I was prepared for every circumstance. But I wasn’t.

Each volunteer has a four to six hour work shift. We are given vouchers for lunch from one of the concessions stands on the golf course. On my first day of work I finished my shift at around 2 p.m. and was hungry. I went to the nearby concession stand and scanned the menu for the salad selections. There were eight different types of sandwiches, but no salads.I have severe gluten sensitivity and the smallest bite of bread will give me a migraine headache and severe intestinal pains that can last for days. I asked one of the concessions workers about salads and she told me they did not have any. I texted my volunteer coordinator and he told me that a nearby location did offer salads.

So I hurried to the next one. And then the next. And then the next one after that. I walked to five concessions stands scattered around the golf course and scanned the menu at each location. There was not one item on the entire menu that I could eat. Every item was made with wheat.As I left the fifth stand, my eyes started to tear up. I had not purposely eaten gluten-containing foods for 10 years. As a trained nutritionist I knew that about one percent of the population has celiac disease and another six to 10 percent has non-celiac gluten sensitivity. I could not believe that this golf tournament, which strove to make money from its concession stands did not have food available for as many as 10 percent of its patrons.

Like Simba I was blissfully unaware that the environment is stacked against those of us with special dietary needs. We can never take for granted that we will be able to find safe food to eat when we are not at home.

For the two previous years I had volunteered, the concessions stands had offered a chef salad that was safe for me to eat. My husband had volunteered for four years prior to when I had and for all of those six years I was able to find something safe to eat at the tournament. So when I left for my volunteer job that Thursday morning in April, it did not occur to me to take my lunch with me. I assumed I could use my meal voucher and eat there.

My husband still had several more hours to work, so before I left the tournament grounds I went by the communications trailer to ask if there was anything available for volunteers to eat that did not contain gluten grains. The worker in the communications trailer was sympathetic. He had celiac disease and had brought his lunch with him. He called around and they confirmed that pre-made sandwiches were the only foods available. I expressed my discontent and left to get lunch.

There was a Whole Foods Market on the island, so I went and got a fresh salad from their bar to eat. Feeling somewhat refreshed, I returned to the tournament to watch until my husband finished his shift. The next two days that I was scheduled to work, I was prepared and took food with me.

Those of us with a chronic illness always have to be prepared.  The outside world is stacked against us, so we have to consider what could go wrong and plan for it. “Uncle Scar” is waiting for us and will devour our health if we aren’t vigilant.

If you have food allergies or food sensitivities, take safe food with you. If you take medications, take extra doses with you. If you have mobility issues, plan for what to do if there are no ramps or the elevators are not working. Assume the worst case scenario and plan how to handle it.

Many times I give in and cry, thinking about all of the extra work and preparation I have to go anywhere that involves being away for one or more meals. Then I get to work and make the necessary extra preparations.

That is everyday life with a chronic illness.

Image Courtesy of the Simba Facebook page

Originally published: July 13, 2018
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