Despite a huge step towards education and awareness in both the media and in the classroom, severe food allergies remain hugely misunderstood and are tangled in too many misconceptions–misconceptions that can have deadly consequences.  As a childcare worker and a friend of many people with severe allergies, it’s something I often find myself thinking about.  But unless you live with it, you don’t know the half of it.

Chad is, according to his Facebook, a ninja, and also my neighbour at the cabin.  Though he doesn’t proclaim his ninja-status in his guest post, only badassery, he shares a story of a recent experience living with severe food allergies.

So I’m The Chad. 37, husband, father, badass and sufferer of a hidden illness. I have a deadly allergy. I really need the guy from the movie trailers to narrate that part. About 10 years ago I suddenly developed an allergy to all water dwelling creatures. Call it seafood, fish, whatever, if it comes from the water, it will likely kill me.

Sadly, one of my most favorite foods is tuna. Not anymore though. I’m not here to bemoan my issue as I have pretty much come to terms with it. What I’d like to talk about is respect for people who have allergies, especially in restaurants.

This weekend my wife, the boy and I went to a local MONGOlian restaurant that shall remain nameless. Now we eat there a fair bit and I’ve always been pretty happy with how they handle it when I tell them I have an allergy. They are quite allergy friendly to all sorts and, as a result, it’s one of our favorite lunches out.

As usual we told the server I had a seafood allergy and off she went to tell the grillers so they could clean a spot for me when I got there. All went well, the tower of food was created and the grill was being scrubbed when my wife heard this terrific exchange:

Server: “That guy has a seafood allergy.”

Manager: “Are you sure it was seafood, cause we don’t have seafood here.”

This was the start of a terrific comedy of errors that lead to one of the staff dumping a bowl onto the grill right beside my “clean zone”. This bowl prominently featured both fish and seafood and all of the oil and flavour sauces ended up guess where. That’s right, in my stir-fry. I calmly called over one of the staff and advised that they would need to throw mine out and I’d go and make a new one. I explained why at which point I watched two of these wonderful gentlemen pick through my stir-fry as though they could find and remove the offending material. I explained again, which was followed by further blank looks, more useless picking through my food, ending with me walking away to make another bowl.

So far, nothing too bad, however my return to the grill was met with sighs and looks of annoyance as if my allergy was in some way inconveniencing them and making there world a sad, sad place. They created a ridiculous safe zone that was nearly half the grill and anytime something bounced out of someone else’s stir-fry, close to mine or not they made a Tony worthy production of stopping everyone and flicking it off the grill. It’s pretty horrible when you feel like you have to apologize for something that is not your fault and that you didn’t ask for. The story ended happily-ish with a free stir-fry for me and an “apology” from the manager type person. Will I go back? Maybe, but probably not to this location. The actions of a couple of people who have likely never been affected by something like an allergy has effectively turned me off from the establishment.

It also made me think about how others with allergies are treated and how much of an issue non-allergy folks make when their kids can’t take a peanut butter sandwich to school or are asked not to wear perfume or cologne to work or are asked to take 5 minutes to make sure someone’s food is safe to eat. It would be great if everyone that’s ever felt put out or annoyed by this would just take a moment and think, “how would I feel if this were my son or daughter or myself affected by this?” “What if one peanut, one shrimp, one sting could kill me?”

In addition to his day job, Chad creates short films and photo slideshows with Wildhorse Jack Productions.  He and his family can be found travelling on major league baseball adventures.  At the cabin, he can often be found on the dock with a book [until those annoying neighbours come over and bother him, anyways!].

I walk across the loop between the athletic centre and the main campus building. The cold fall breeze blows my hair in front of my face.  As I push it away, I look at the people around me, people I don’t know.  I then look at the people i know: my friends, my family, my classmates, my instructors, my coworkers, the kids at work.  How many of them, like me, have an invisible illness?  How many of them have an understanding of the rigorous schedules, symptoms and unrelenting attention required to manage their disease?  How many of them fight their body day in and day out and still, like me, look totally healthy on the outside despite what may be going on inside or behind-the-scenes to keep them healthy?

And I will never know.  Some of the above people share their stories with me.  Some of them choose to keep their stories silent and invisible.  And some I will never even speak to or see again.

Yet all of us, possessing an anomaly settled inside, move forward–awaiting the day where our elusive cures will come.

This week is Invisible Illness Awareness Week!  I’ve been blessed by many of my amazing friends who want to share their stories to help us all gain a bigger perspective on what it really means to live with a variety of invisible illnesses.

My friend Meggs has Multiple Sclerosis, and does her best to keep active and take an active role in managing her disease.  She also lives as a person with MS and without insurance.  She shares her story of some of her experiences navigating the world of invisible illness in the last year.

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Since I was diagnosed with Multiple Sclerosis in early 2011, I’ve come across more than a few people who are (unintentionally) ignorant of what it’s like to live with a disease that has symptoms nobody else can see. I think one way to let you in on what it’s like to have this “invisible” disease is to share some of the most frustrating things people have said to me since I was diagnosed and the things I wanted to say in response but didn’t:

  • What they said: “You don’t look sick. Are you sure you have MS?” What I wanted to say but didn’t: “I can’t see your brain. Are you sure you have one? Yes, I’m sick. Yes I have MS. I’m sorry if my face isn’t falling off as an outside indicator that there’s something wrong with me. I shouldn’t have to look sick for you to understand that I have lesions on my brain. Ugh!” I may not look sick, but I feel like a big ol’ pile of poo sometimes. MS is a disease that has so many symptoms it’d take me an entire day to explain to someone how it affects my day-to-day life and why they can’t see my symptoms. I walk around about 30-40% of the time with a super annoying and sometimes painful tingling sensation in the entire – yes ENTIRE – left side of my body. Not to mention the shooting pains, vision issues, dizziness, and muscle fatigue.

  • What they said: “I know [so and so] has MS, and she balances a career and a family and an active social life quite well. When are you going to go back to work and why don’t you go out with your friends more often like [so and so]?” What I wanted to say but didn’t: “[So and so] has medical coverage and a treatment strategy that she has worked out with her neurologist. [So and so] has the benefit of accessible health care and medication at her disposal. Were I able to afford the fees to procure a neurologist in order to gain access to meds and treatment plans that would allow me to go back to work I would be working instead of spending countless hours trying to find resources to get back on my feet. As of this moment without meds to manage my symptoms I’m kinda out of luck. And I don’t go out with my friends more often because I’m tired. Fatigue is a vampire. And not the sexy ‘True Blood’ kind. The ugly ‘Nosferatu’ kind. Furthermore, I am NOT [so and so]. Thank you; please drive through.”

  • What they said: “Oh my GOD! That’s horrible! Are you gonna die from it?” What I wanted to say but didn’t: “Oh my GOD! I know! I sure hope not!” If I had a nickel for every friend or acquaintance that has told me some horror story about a person dying or having their livelihood stolen from them because of MS… well, I’d probably have a dollar or so. The fact is I don’t know which type of MS I have or what my general prognosis is because I don’t have access to health care that will help me figure that out. I found out about my disease thanks to the compassion and ingenuity of a few really awesome people who work with homeless and indigent programs in my community. I would prefer not to be bombarded with sympathy and remarks like this because all they do is make me want to punch people walls.

All in all I try to have a sense of humor about things and laugh it off when I’m able. I guess it’s one way of coping with the fear and the anger I’ve felt since I was diagnosed. The truth is most of my friends and family will never understand how it feels to live with Multiple Sclerosis… and I’m thankful for that. Hopefully one of these days I’ll be able to find some affordable health care and a treatment plan that’ll work for me. Until that day comes, I have hope and a positive attitude and a great online community to reach out to when I need advice about how to deal with the things I’ve got to face in the days ahead. Thankfully, I also have a mental filter that keeps my mouth shut when other people who don’t even really know what MS is find it necessary to step in and fix me with their advice and their lectures about how I should be handling the disease. Otherwise I might have not only Multiple Sclerosis, but also the need to stretch a thick piece of silver duct tape across my lips everywhere I went. Now that would be something to explain!

Megan is also a survivor of childhood sexual abuse and sexual assault as an adult. She has been diagnosed with Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Mild Obsessive Compulsive Disorder, and depression. She blogs about her healing journey at I Tell My Truth.

Thanks for sharing your story, Meggs!

On the 12th of each month, a bunch of bloggers from around the world take 12 pictures throughout the day.  Here are my pictures for September 12th, 2011!

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8:46 am – kitchen. Ready for school.  Even though I still had a while to hang around home.

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8:57 am – kitchen. Mike and Bethany making appearances in my 12 again!  Because I always feel the need to remind everybody about 12 of 12 because I love it so much ;).  [Sorry guys, Bethany and I didn’t meet up again this month! :)]

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9:05 am – kitchen. Wisconsin cheese for breakfast?  Well, okay.

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9:39 am – bus stop. Was running late which caused various things to occur.  Forgot my other three inhalers [ack] AND had to dig around in my backpack for this one after my massive walking-sprint to the bus stop.  I’m just happy it was in my backpack!  Also I made it to the bus stop in 7 minutes, which is ridiculous.

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11:30 am – athletic centre nap area. Outta class and met up with Dean [yes, the same one as in the cardboard cutout head a couple weeks back].  Read some of my textbook for Exploring the Bible.  Sort of.  Also drank a Yoo-Hoo from America.

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11:38 am – bookstore. Dean and I headed over to the bookstore, which STILL does not contain the Bible I need for Bible OR my Physical Activity Promotion and Adherence textbook.  Grr!

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1:17 pm – athletic centre nap area. Met up with Sam and snapped this on my way to class.  The guy came to refill the chip machine in the nap area, and he apparently tried to give these to Sam but then just left them.  [Coincidentally, my Physical Activity Promotion and Adherence prof came in throwing bags of chips about the class, I wonder if he and the vending machine dude are buddies?]

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5:50 – kitchen. What should I put my Cloudflare sticker on?

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7:25 pm – starbucks. Pumpkin Spice frappuccino and a Birthday Cake pop.  Happy birthday Steve and Briley!

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7:42 pm – Arby’s. Gross fries, good times.  Tara’s sisters changed her Facebook password and she made the mistake of exclaiming the new password loudly while Kelly and I had our phones at hand.  We spent a long while updating her Facebook status to various things.  None of which were incriminating, because I suck at that kind of thing.

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9:04 pm – Starbucks. Because Tara was scared that her sisters were going to blackmail her and put embarrassing Tumblr videos on her Facebook [Tumblr is her secret world, as she exclaimed in Arby’s], she had to go get them Starbucks for bribery purposes.

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9:06 pm – Starbucks. Oh pumpkin spice, you make me happy.  I love fall.

 

12 of 12 was created by Chad Darnell.  Check out his blog to see a list of all September 12 of 12s.  Thanks for allowing us to infiltrate your blog space for another year, Chad, and for dreaming up this project.  The 12th has become one of my favourite days of the month!

even now, the world is bleeding / but feeling just fine, all numb in our castle / where we’re always free to choose / never free enough to find / i wish something would break / cause we’re running out of time.

and i am overcome / i am overcome / holy water in my lungs / i am overcome

This is the first song I listened to this morning, alone, in silent reflection, silent contemplation, silent prayer.

Ten years, ten long years, and still without words.

And it doesn’t matter where I was . . . because I had an insignificant part in this day ten years ago.

Heroes were brought to light.  Firefighters and emergency personnel, air traffic controllers . . . the passengers and crew onboard the flights, those working in the World Trade Centre and their families.  Heroes who never had expected to become heroes as they went about their lives.

Ten years of tears from families and friends of those who died as a result of the 9/11 terrorist attacks.  Ten years of war.  Ten years of change, of uncertainty.

Ten years of trying to rebuild lives that were shaken, turned completely around . . . a country that was changed forever as a result.

Ten years of time attempting to restore hope.

i am overcome, Lord.

–overcome, live