(Anybody recognize that P.O.D. title?)

Yesterday evening, sitting next to the sixteen-year-old I do respite with at youth, she grabbed my arm and started playing with my purple flowery sportsband.  Didn’t ask about it, just played with it, and asked what time it was [I think she thought it was a watch].  The funny thing is, the last two weeks, none of the kids had asked about my bracelets (I work with like 55 of them).  Until yesterday, that is.

“Miss Kerri, do you have asthma?” [The kids at work call me Miss Kerri.  It’s all cute and such, though it threw me off a lot the first, oh, two months of work.]

“Yep.”

“[Insert other kid’s name here] has the same bracelet!  And she has asthma, too!”  [Hooray for being matchy with one of our kids?  She doesn’t wear hers much anymore, I’ve been noticing.]

“Yuppers.  I have a black one too, but it’s too big.”  Kids understand all about things being too big.  Adults kind of lose that sort of understanding.

The other thing adults kinda lose, is the ability to not ask me incessant questions and just take it for what it is.  Your bracelet is matchy to my friend’s bracelet, you both have asthma, I’m gonna go back and play now.  Kids are so easy (most of the time).

Last night, my other respite girlie sits down on my knee and starts playing with my bracelet. “I used to have that one!  Except it had velcro on it.”  [The girlie has asthma, recently diagnosed epilepsy and potentially severe environmental allergies in addition to the behavioural/developmental things that lead me to doing respite with her].

 

And my question is . . . why are these kids not wearing their bracelets?  I understand MedicAlert is a little pricey for some, but there are other options.  It’s something I definitely think is important, and people don’t understand how important it actually is..

It’s your life.  Do you wear medical identification to identify your invisible illness?  Why did you make that decision, or why not?

I always get really excited when I meet people who are named Kerri(-with-an-I).  Yesterday, I received a request on Twitter from another Kerri to guest post [the second one this week, actually.  We Kerris are into advocacy, it seems!].

Kerri has Myasthenia Gravis, an incurable autoimmune disorder that affects the neuromuscular system, and uses social media to educate others about the condition.  In addition, she leans on the Eternal Rock to help her cope, and her faith in Jesus shines through in both her blog and her guest post here.

Thanks for sharing, Kerri!

Kerri Sweeris

I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.

My name is chronic illness.

I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a “normal” life.

My name is myasthenia gravis.

I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.

My name is medication.

I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don’t want to.
I will help you go when you just want to stop.

My name is HOPE.

“I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.

My name is JESUS.”

Kerri Sweeris is a wife and mother of one miracle child, a 5 year old named Jacob.  She gets through life with the encouragement of good friends, a lot of humor, and by the grace of God.  Kerri blogs at Sick of MG – Living with Chronic Illness.

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.