Saturday, August 11, 2012

What's Chronic Illness Got To Do With Homelessness?

A month ago, when my husband and I drove away from that storage unit with our family’s meager belongings stowed carefully inside, I comforted myself with knowing how lucky I am in the fine gift I have in the health and happiness of my husband and sons.
Still, as a professional bloggess who shares the intimate details of my life with a daily audience of thousands, I feel a certain nakedness that I cannot shake as  I continue to relate the shameful burn of poverty and chronic illness in my daily posts.  I feel a responsibility to explain how things got this way, as though there should be some reason that makes sense for our poverty or my illness.  I feel urgency in those who respond to the plight of my homeless family of four, they are just like me, we all want a resolution to our problems to reveal themselves immediately.

Trying to dig one's self out of poverty feels like trying to drill for oil through concrete with a plastic spoon.  The irony of the fact that a person cannot actually physically pull themselves up by their own bootstrap is never lost on me.  In fact, it is like an infuriating thorn in the sole of my shoe, an ever present painful jab, a reminder of the fight I cannot, no matter my efforts, seem to win.
Of particular frustration to our family has been the battle with lost time, energy, resources, and opportunity that comes with my disability and illness. I have a recently diagnosed rare disorder known as psuedotumor cerebri, it triggers my existing diagnosed chronic migraines, and agitates other illnesses like my ulcers, back injury, and personality disorder.  It is a painful, chronic condition that randomly interrupts all of our daily lives with upsetting symptoms.  When I am at my worst, I cannot see well, I cannot hear, I can’t feel my hands, I can’t talk, I am vomiting, I am in severe pain, and I am confused.  These episodes happen several times a week.  They scare my kids.  They embarrass me. 
Being poor and suffering chronic pain is perhaps the worst thing I can think of.  In my state, politics tend to be so conservative that doctors, dentists, and mental health providers will deny Medicaid patients because they have some kind of political issue with us.  When combined with the nationwide struggle with narcotic policy and chronic pain management, I have found that it is difficult if not impossible to find empathetic and effective care at all. The only place required by law to not turn me away is the ER and they are tired of seeing me because they know that if I were given good care by a primary doctor working closely with specialists I could manage my health far better.  My mother, who is often the one charged with escorting me to the ER is just as ragged and worn as I from the doctor's nagging us to simply find some better way.  It seems almost daily that we're filled with exasperation as my mother and I struggle to explain how very much we would love to find a better way of manage my illness.  Finding a specialist for a rare disease, that requires chronic pain management, for a patient on Medicaid in a red state like mine has taken me 7 solid months of work and I’ve been unsuccessful as yet.  In the process I’ve met some mean doctors.  One ER doctor, after being ordered by a superior (unbeknownst to me) to treat my pain, came into my room and said that if I wanted pain medication I had to submit to a rectal exam to confirm my nervous system was okay and I wasn’t having a stroke first.  Terrified of a stroke and in terrible pain, I consented for the uneeded test at the hand of the resentful, power hungry doctor.  I’ve been accused of seeking narcotics while voluntarily using alternative drugs till I damaged my heart in an effort to avoid them.   I’ve been belittled by doctors who diagnose me with “chronic intractable migraine and degenerative disc disease” on the same form as they propose “yoga and water” as a treatment plan. I’ve been through spinal taps, CAT scans, MRIs, blood tests and more.  I call specialists, neurologists, opthomologists, endocrinologists and more trying to find answers and options.   
I do all this while trying to pretend not to be broken for my children’s sake.  I do it while scanning the classifieds and craigslists.  I do it while jotting a note or two about poverty on the internet.  I do it until my eyes jiggle in their sockets at night and tears of frustration roll down my cheeks.
I hear the dialogue occurring in the political arena around me about people like me who are disabled and homeless.  I know that there are those who think me nothing more than a mooch.  I also know how hard I fight every day that our lives might be better tomorrow, and I know that I got here by the fall of fate’s dice. 

I know that I am sick and disabled and broken and poor but I cannot give up.  I know the sheer irony in trying pull myself up by my own bootstraps and I know the impossibility of it.  Yet, just as if I were drowning in a rip tide, I fight the current because my life depends on it.  My sons and the four brown eyes that count on me even when they are closed in restful sleep depend on it. 
They depend on me.  So I type till my fingers tremble and I send whispers out over the internet… hoping that my voice is heard.  Hoping that I am not alone in my struggle to weave stronger bootstraps from nothingness, there is some comfort in knowing that I am most certainly heard and not alone.  Some comfort in knowing that the echo of my words might change something, somewhere, for somebody… if only by offering a reason to remember empathy.  I believe that maybe Thoreau said it best when he asked, “Could a greater miracle take place than for us to look through each other's eye for an instant?
If you look, for a moment, through the desperate mist of my eyes at any given moment, through it all you’ll still see hope, always hope.
Till next time


Mary G said...

You are loved, dear lady. In a universe where love is literally all that holds our atoms together... you ARE LOVED.

Courageous Canary said...

You are definitely not alone. ((hugs from someone who knows what its like)) I know what it is to live in a red state and face that horrible treatment from the physicians. I am sorry this is happening to you.

Anonymous said...

i know your story, i live it, but no husband , no mom, no kids to keep me hanging in there. after 15 years, i have been homeless 5 times, and the last 3 homes, [and current one] are section 8 rentals that exacerbate my disability, Multiple chemical sensitivity and related illness and disorders.
i have lost all hope and am just waiting to die, i may even speed up the process, as there is no help for me

The Bucking Jenny said...

Anonymous: send me an email at I will find a way to help you.

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