The Periphery


Heart in Hands

“I no longer have patience for certain things, not because I’ve become arrogant, but simply because I reached a point in my life where I do not want to waste more time with what displeases me or hurts me. I have no patience for cynicism, excessive criticism and demands of any nature. I lost the will to please those who do not like me, to love those who do not love me and to smile at those who do not want to smile at me. I no longer spend a single minute on those who lie or want to manipulate. I decided not to coexist anymore with pretense, hypocrisy, dishonesty and cheap praise. I do not tolerate selective erudition nor academic arrogance. I do not adjust either to popular gossiping. I hate conflict and comparisons. I believe in a world of opposites and that’s why I avoid people with rigid and inflexible personalities. In friendship I dislike the lack of loyalty and betrayal. I do not get along with those who do not know how to give a compliment or a word of encouragement. Exaggerations bore me and I have difficulty accepting those who do not like animals. And on top of everything I have no patience for anyone who does not deserve my patience.” ~José Micard Teixeira

When your child is diagnosed with a chronic illness, everything changes.  Your new reality is overflowing with doctor appointments, insurance red-tape, sleepless nights, unpaid medical bills…

When you do come up for air, between the stages of grief, exhaustion, and fear, you begin to understand that not everyone will be able to wrap their head around the disease or your situation.  This group of people can then be divided into two different categories.  There are the ones who are honest and upfront about their inability but still give you the berth that you need to function.  They don’t look down their noses at you if your house is a bit messy or you happened to run out of tissues and social graces that day.  They don’t take it personally when you decline an invitation.  They just keep loving you and your kid.

And then there is the other category.  Sometimes, those that fall into this category come as the biggest surprise.  They may be people with whom you were once quite close and connected to, they may even be family.  However, they treat the chronic illness and your struggles with it like an elephant in the room.  These people expect your lives to just keep right on going, business as usual.  Except that it can’t, it doesn’t, and it won’t.  Mustering up the time and energy it would take to explain, for the hundredth time, is a waste of precious resources that you simply do not have.  And quite frankly, if the only thing you have to bring to the table is criticism, please go sit at another table.

When your life changes in an instant, you realize very quickly how truly short and precious life is.  The shock can leave your reeling and unnecessary conflict is traumatizing and becomes something that you want to avoid at all costs.  The last thing on Earth that you want to do is spend your time with judgmental people that complicate things and add to your stress.  When you are hanging by a thread, you need people that will toss some hope your way, not a pair of scissors!  You want to spend your time with people that help you celebrate your smallest victories, not point out and reprimand you for your tiniest flaws (trust me, I didn’t need any help finding them, I have already beaten myself up about them plenty.) People that forgive your inability to be their idea or expectation of “normal”.  And these relationships are reciprocal and comprised of unconditional love.

So, after some time has passed, you begin to understand the parameters within which you are able, willing and comfortable functioning.  You then, begin to set healthy boundaries that support the way you want to exist as individuals and as a family.  I read a great blog post about a week ago where the author wrote: “You have to put your flag down and draw a circle and inside that circle put all the things you love. Your favorite memories and people you cherish and art and poems and all the rest. When something tries to slide into the circle that you didn’t put there, you have to give it some serious thought whether or not it can stay. (You do get to decide, remember.)”  And that is what happens, you draw your circle, a carefully constructed bubble of peace and contentment; within which you allow certain people, the ones in your camp, your “Framily”.  The “others”, you keep in the periphery.

Where this concept, this bubble, begins to develop cracks is when the people on the outside of the circle expect or assume that it is possible for you to continue to interact in ways that are not peripheral.  I have found that it is best, although not always easy, to stand firm and hold the line, do whatever you need to do to secure that safe and sacred space you have worked so hard to create.  Grab pillows, grab duct tape, fill those spaces with deep breathes and while you are at it, burn some sage.

I am certain that there is a good possibility that during the process of figuring this all out, I have managed to land myself in the periphery.  This experience has taught me to try, as often as I can, to be in the right camp, the ones that are allowed inside the bubble because they don’t have sharp edges or words.  The ones who respect boundaries and limitations and instead of looking to place blame, love just a little bit more than is necessary ❤


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