Monthly Archives: September 2015

Loving Yourself Through Chronic Illness

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In January 2014, I went to the doctor with pretty severe wrist pain.  Visits like these were not (and still aren’t) uncommon.  I thought I knew exactly how the appointment would go: I would point to where it hurt, they would take an x-ray, they would tell me there was no problem, and they would send me on my way with a little less pride and a little less money.  I was no stranger to this system.  But this appointment was not as expected.  After the x-ray, my doctor came back in with a puzzled look on her face. “Does your thumb hurt? It- isn’t where it should be.”  And this, friends, began my long and (so far) difficult journey to loving myself with a chronic illness.

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The Ehlers-Danlos Syndrome National Foundation defines EDS as “a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility.”  Oh, yes.  Suddenly the previous 19 years of my life made sense.  Every ache and pain, every sprained joint, and every mysterious bruise could suddenly be put into a cute little zebra-print storage bin in the corner of my room.  I could finally fold up my “crazy” rug and sweep my symptoms into a pile, to be put in their proper home.  It was a lovely thought, one about which I had often fantasized, and an even lovelier reality.  But, then what? What happens after the “it wasn’t all in my head” high?

My mother taught me to love my body.  She taught me to see myself as beautiful in every aspect.  I grew up loving my body.  When I was in middle school, I used to stand in the mirror and flex my legs, admiring their definition.  When other girls started straightening their hair, I didn’t understand because I loved my frizzy hair just the way it was.  In this way, I was very fortunate.  But, at a somewhat early age, I had to face another challenge entirely: how do you love a body that doesn’t seem to love you back?  I remember the first time I realized that I was the only one of my friends still getting “growing pains.”  When I would complain about these pains, my friends would tell me that I was probably just still growing. I would pretend to agree.  When I would get dizzy, people would tell me that I just stood up too quickly.  I would pretend to agree. When my knees would buckle as I was walking to class, my friends would tell me I was clumsy.  I would pretend to agree.

I realize now that I never really loved my body.  Sure, I loved her in a superficial sense.  I thought she was beautiful.  I still do.  But I didn’t really love her.  In fact, I resented her.  I was scared of her.  I was in a toxic relationship, and I could not escape.  I was angry at my body because I didn’t think she loved me.  I realize now that I just didn’t understand her love.  My body loved me enough to let me play volleyball for seven years and basketball for nine, before making my hips too wobbly to run down the court.  My body loved me enough to let me get up out of bed, even though she was working harder than I knew.  My body continues to love me this much.  It is the least I can do treat her as she treats me.

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This journey to self-acceptance has been anything but easy.  It is human nature to have hope.  Hope is an absolutely beautiful thing.  But, to someone with a chronic illness, hope can be dangerous.  When I dislocate a hip, people tell me to “get well soon,” which is a lovely gesture.  It is also something to which I certainly cannot commit.  Telling a chronically ill person to “get well soon” is, though very well intentioned, not exactly comforting.  Chronic illness means the opposite of getting well soon.  An important part of loving yourself with a chronic illness is learning how to be well without being well.  It is learning to love your body, even though she fails you every day.  Loving yourself with a chronic illness means learning to get better without really getting better.  And I am beyond happy to say that I understand this now.  I can say now that I love my body.  I appreciate her for exactly what she is.  My body is a warrior.  She is strong, despite her weaknesses.  Her creativity astounds me.  And through all of this, I have learned, perhaps most importantly, all of the ways she loves me.


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Series V: Ponderings

shelby westfall blockQuestions for the Waves

I wonder if it can see me,

from underneath the waves.

Can it hear the lies I tell it?

Will it keep them in its grave?

 

And when I lay to sleep at night,

does it have secrets of its own?

Is there a love beneath the surface,

only dreamt and never known?


Will You Still Love Me After Midnight?

Will you still love me after midnight?

I toss and turn (I’ve heard I snore).

Will you still want to hold me tight?

Will you want me anymore?

 
 

And will you love me in the morning,

if you make it through the night?

I fear I should give you warning,

before the sun is bright.

 
 

I won’t wake up looking pretty.

It’s nothing like the shows.

I know it’s vain and petty,

but this is something you should know.

 
 

Because I’ll love you after midnight,

even though you snore.

And when you hold me tight,

I’ll love you even more.


Promises

Do you hear me when I whisper

what I’ll never say out loud?

When I’m embarrassed and ashamed,

do you promise you’ll stay proud?

 
 

And when I’m at my lowest

and I can’t look in the mirror,

will you find all my self-pity?

Will you make it disappear?

 
 

When I’m hurt and I’m immobile,

and I’m sick in years to come,

will you promise to not stop smiling?

Will you always keep me young?


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Campaign Zero

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Since the killing of Michael Brown Jr. a little over a year in Ferguson, Missouri, the #blacklivesmatter movement has made huge gains in visibility and has sparked nationwide protests against police brutality.  In light of the protests and unrest in Ferguson and all over the country, the Department of Justice investigated the Ferguson police department, finding egregious racist practices of the department toward black residents and revealing a pattern of systemic racial discrimination.  Since then many changes have taken place in leadership positions in Ferguson, an attempt to eliminate the racist practices and and foster a more sanguine relationship between the police force and the population.  A new police chief, city manager, and municipal judge have replaced the old– black leadership is on the rise.  Though there have been notable changes made in Ferguson to rectify decades of systematic oppression, the question of “How much has really changed?” still hangs in the balance.  Changes in leadership may show a better reflection of the city’s demographics, but identity politics do not necessarily lead to the extreme changes in policy that are imperative to ensuring equality.  After the recent shooting death of Mansur Ball-Bey– who reportedly pointed a gun at police officers while fleeing a residence– on the one-year anniversary of Kaijeme Powell’s killing, protests have surged again.  Police accounts of the shooting are currently being challenged by some eyewitnesses, who claimed that Ball-Bey was unarmed and was shot while running away. A recent autopsy showed that Ball-Bey died from a single gunshot wound to the back.

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Despite such wide recognition and demands for systematic change by the #blacklivesmatter movement to curb the violence inflicted upon communities of color, the frequency of shootings by police have not been on the decrease in 2015.  So far, 746 people have been killed by the police in 2015. Of those killings, 41% of the victims were black or brown.  Some criticisms of the movement in the past year include unclear leadership and demands.  Many say, “what good are protests if there is no concrete plan that leads to change?”  Contrary to those beliefs, leaders of the movement have begun to emerge during this past year– leaders with a plan.

Campaign Zero is a recently launched website documenting the problem (police brutality and excessive shootings in the United States, especially in communities of color) and providing a myriad of detailed policy solutions to combat every aspect of the US criminal justice system that sanctions this violence against its citizens.  Based on extensive “research, data, and human rights principles,” Campaign Zero lists in detail each necessary policy change in ten categories that will achieve the goal.  Some of these policy changes include ending police department quotas for tickets and arrests, ending stop-and-frisk and broken-windows policing, and revising and strengthening the local police department’s use of force policies.  Closely following the upcoming 2016 presidential elections, Campaign Zero also charts each presidential candidate and whether or not they have addressed any aspect of the Campaign Zero’s policy solutions and/or provided their own, and stated whether they were harmful or helpful to the end goal of eliminating police brutality.
One year after Ferguson, Missouri sparked months of passionate protests and calls for dismantling the system, many things have changed, and many more still need to. Campaign Zero’s calls for action with the policy solutions to support it bring us one step closer to the equality we seek.


dianejobio