Gone is the Blissful Ignorance (Again)

The past 10 months have been far from a picnic in the park.  We all go through struggles & when we reach out in support, encouragement & genuine care it makes a huge difference in my experience.  If I could choose 2 themes for the thoughts flooding my brain over the past number of months they would be:  come back blissful ignorance & eff the box.    Amongst the frustrations & turmoil of life I have leaned in & grabbed joy filled moments on purpose.  I would have surely lost my perspective & a good portion of my sanity otherwise.  A wise mentor of mine many years ago gave me some advice that I will benefit from for the rest of my life.  She told me to “choose the hill to die on.”  She knew then that in all probability my feisty nature although very much in check back then would surely grow over time.  She is about 12 years older than me & tried to pass on some wise advice that I try to heed.  All she was getting at was that it is easy to get bogged down with battles to fight in life but some are worth standing up to & for & others not so much.  She knew that it would be pretty easy to get wiped out if attempts were made to fight every battle big & small along life’s journey.  That was before the tyrant of type 1 diabetes & the subsequent 3 other autoimmune diseases entered my life so I really try diligently to choose my battles but the ones I choose I am all in for!  How about you?

The battles I do not shy away from include health advocation, anti bullying & a few other causes that I am passionate about.  If someone says something ignorant about a health issue I will correct the person assertively, politely & with humour when appropriate.  For instance the list of crapatate nonsense that most of us have heard about the causes & cures of & for type 1 diabetes is long & smells of the steamy brown stuff.  “Can you eat that?”  The response is my head is, “Does it have poison in it?”  If it does well no, otherwise come on already right.  “You ate too much sugar & got diabetes” is another one that raises my dander & blood pressure.  Sugar did not cause it but believe it or not sugar can save my life just like this morning for the zillionth time I feel like saying with an exclamation mark.  Why do people make assumptions & then convince themselves that they are experts about other people’s health I wonder.  And if some words sound similar it is yet another excuse to make incorrect assumptions I have experienced too many times.  I don’t bother telling many people about the autoimmune diseases that I live with.  Only a small circle of dear hearts get it I find.  Nine times out of 10 if someone learns that I have psoriasis for example they give me a judgmental look and or spiel about how I should not have been basically an alcoholic.  What?  No, I am far from an alcoholic & no I do not have cirrhosis but rather psoriasis & I indulge in alcohol on average 1 drink a month if that.  These are the individuals who get the autoimmune disease of psoriasis (genetic predisposition) mixed up with cirrhosis of the liver. (Also this is a handy time to also point out that cirrhosis can occur for reasons other than extreme alcohol consumption since even babies get that condition.) How annoying.  I just keep doing my small part in educating & advocating for a handful of autoimmune diseases.  Then I try to keep my sense of humor in general.  And yes, I even try to choose the hills to battle on in check semi successfully.   The thing that I feel through & through is that no matter what people’s misconceptions or total rudeness or ignorance an autoimmune disease is not a dirty little secret.  I will not hide out or feel less than especially for things that I did not bring about in any way.  The hand of cards that life has dealt sometimes appears to be not the best possible one yet there are joys as well mixed in that outweigh the bad stuff by infinity. 

Last week I found that my often understated feistiness was multiplied or kind of on steroids so to speak.  There are times when I feel like I may just implode if I don’t get my feelings out.  Have you felt that way too?  One of our sons has been going through an especially difficult time with bullies.  The things that these boys are saying are beyond hurtful & heartbreaking…things like calling my son a “retard” & “loser” & many more including hurtful things about my son’s birthday party & gifts. One boy in particular tried to absolutely ruin our son’s birthday & try to cause misery.  I made sure that our son was nowhere near these bullies especially on his birthday.  I wish I could build a permanent shield around him.   I shared some words with friends last week when really as a parent I just felt so beside myself.  Here are the words:  “If only I could build a bubble filled with love that could not be pierced by the sad realities I would in a heartbeat for our son…your heart gets broken in union with your child when they are left out, judged, mocked, insulted & hurt.  This world is not inclusive…that is just a nicely packaged crock of bs that is a form of propaganda to help the masses feel fine about unacceptable behaviours.  For all the parents of kids who are pushed to the outside of so many activities my heart is in union with yours.”  Although society goes on & on about differences are to be embraced, there is so much apparent division & vicious behaviour in the world. 

By nature I am an upbeat, enthusiastic person with the glass is exactly full to needed attitude but things can get to anyone.  What some people take for granted becomes a huge uphill crawl for others.  There have been numerous times that I have shaken my head at the level of declining courtesy.  Even the words “please” & “thank you” are in short supply.  What the heck happened?  It goes downhill from there.  Over the years I have helped out with kids’ reading programs with enthusiasm.  Before we read a word I teach the kids about manners.  It might be a drop in the bucket yet it is something & in my mind I don’t have a right to complain about anything in life if I don’t figure out & action solutions.  Next to lack of manners, I really cannot stomach hypocrisy or fake behavours.  I do choose to battle on that hill perhaps a bit too vigorously at times.  My husband has even at times “forgotten” (on purpose) to tell me about certain meetings until they are over because he knows I will be super feisty in the face of nonsense, over the top ego & hypocrisy.  Here’s the thing that occurred to me last week in my feisty overload.  It is that I truly feel like there are a lot of parents out there fighting the same battle that my husband & I are.  It is like we are each isolated though in our battle.  We are advocating our hearts out for our kids with specific needs that are not getting met by a mile.  We are in it alone though I feel.  If we could find a way to band together something might actually change.  Individually though it feels pretty dismissive & there are often times when I have felt the message of “yes we see the challenge but just make it go away & fit into the box of our definition of normal & by the way we accommodate everyone.”  My inner response it “eff your definition of normal & your jamming any person into a box.”  I remember feeling like I was a freak of sorts around the “normal” healthy people on a parallel sidebar when I was first diagnosed with type 1 diabetes.  Where are the other people living with this I wondered at the time & I sure knew that I was not the only one.  It felt like it though for nearly 2 long years.  Then I sought out battle buddies living with type 1 & alas realized mercifully that I am not alone in this.  Somehow I will figure out a way to unify with parents going through similar things with their kids being tormented by bullies by other kids as well.  It is not okay for kids to abuse other kids.  To feel different can be painful and or the most natural thing in the world.  When my insulin pump goes off in a room full of people with no clue about the dodgy pancreas (blissfully unaware of how supportive their working pancreas not making noise) I just laugh now.  So what I think to myself.  This will not make me an outlier.  Kids though may find themselves feeling like they are on the outside looking in.  I know our one son feels that way often & he is a natural born social person so it stings when he is left out.  Our one son has suffered from hateful words from other kids and so much more that again; I just want to surround him with a bubble of protection.  I am sure that is how other parents feel going through similar struggles. There are many of us out there going it alone hoping that we can change this flawed world for our children.  Some days I feel like the best I am doing is applying & reapplying an emotional band aid.  You will be seeing me on that battle hill for the foreseeable future.  What is the alternative?  I would never have imagined that this once painfully shy rascal (me) would grow up to be a voice, an advocate and a person to say as many times as necessary, “that is not okay.”

Just over a week ago theme number 2 of this writing piece came into play once again.  It is the reoccurring theme of “I can no longer be blissfully ignorant.”  If you live with type 1 diabetes you may have felt that way when you found out about the diagnosis.  I know I felt that way.  This time around I was at the rheumatoid arthritis specialist for my first visit.  A previous specialist had given me a provisional diagnosis of psroaisic arthritis.  I kind of thought at the time that sounded like a sucky thing to get stuck with but I did not bother to google the worst case scenario or look into it.  All I knew was that I was being referred to yet another specialist & sent for more tests.  And I also knew that many of my joints hurt like hell to a lesser or greater degree on any given day.  The reality of the situation or the bliss bubble got popped for me during my RA specialist appointment last week when the doctor described all the complications that could come my way from this additional autoimmune disease.  I kind of wanted to cry but I didn’t.  Kuddos to me because I wanted to.  It can morph into a disabling situation & I don’t know yet how much permanent damage has occurred to my body yet so that scares the hell out of me. For the first time in my life last weekend I could not walk for over 3 days.  One of those days was my “29^th birthday”  (again).  This is the part of the story where I assure you that a day on the calendar does not matter to me in the least.  The celebration matters however I will be rescheduling my birthday once I feel much better. In the meanwhile I am keeping busy which is no stretch at all since I have our 3 sons home with me for the summer & we are just doing up lots of adventures…things that are close to our wee corner of the world that are old fashioned kid fun.  I have a whole list of fun for us to have.  Eff the box, eff the popping of yet another bubble of bliss too.  Eff more tests & the hectic traffic jammed roads back & forth all summer long & the waits in the waiting room & then the waiting room within the waiting room (why do doctors do that with the 2 levels of waiting rooms?)  Here’s where the bliss remains…it is in knowing that I love my family & friends with all my heart & soul, that I am more than my sucky body & I will also fight to my last breath to protect my kids as long as I live.  And along the way we are going to stick together as a family & I am going to hug them & love them (my husband too of course & furry daughter dog) & reach out, lean in and anything else that it takes to grab all the joy there is.

My heart’s hope for you is that you can jump over obstacles or go around them or pole vault way over it.  The good stuff is on the other side.  Maybe we are always on the other side anyways…we are if we grab joy.

Smiles, Saundie :)

As always be super gentle with yourself.  And when necessary bring on the feisty super powers!  Choose your hill.  The next story sharing will be in 3 weeks on Monday August 8th.  The plan is to infuse some much needed humour into the next story.  Humour is medicinal.