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Being Chronically Ill Means Being Ill Forever

Days spin into nights and into days again. Summer dragging on and on. A hot beast by August every year, a threatening season despite its spring relation. By the end of summer, the ground is cracked and dry like the heels of my mother and her mother’s mother’s dry pale skin. Even the birds are tired by the end of August and all the people are angry and hot. But then the days get cooler and the fist of fall hits me on the chest, breaking me open at my breastbone to reinstill my winter bone ache. The blow forcing my lungs to expel very last breath of summer air. The leaves fall from the trees until they are thin skeletons, standing like a relic of another year gone by. Then it’s winter and the tight-lipped holiday season passes by. The ice moves in and we in Maine are buried by seasonal Nor’Easters until we are up to our throats in snow. My skin grows cold and my pale sinew is stretched over the bones of early nights. Wintertime depression moves on me like a ghost.

And before I knew it another year in sickness passes me by.

I think back on it. All my exhaling between my doctor’s appointments. I offer up my white arms for blood tests and I’m poked, prodded and rearranged until I feel unlike myself. Grilled with the same monotonous questions again and again. How are the voices? The pain? The sadness? Do you still hurt all the time? Have your migraines changed? Are you still sleeping too much? Eating too much? How’s your lower back? Do those terrible cluster headaches still wake you in the early morning, covered with sweat? Is your pulse still tachycardic? And that wakes you too when it races at night? How are the hallucinations? Are they still trying to read your mind?

The answers grow in the back the of my throat and are forced up from my stomach, rattling around my mouth like bitter candy in a plastic bag, “I’m fine,” I say and make my next appointments.

Then six months of winter lapses.

Then summer comes again.

Then fall, winter, and spring.

Being chronically ill means being ill forever.

But what else is there to do with this type of pain?

Give in?

Give up?

Certainly not.

Not while those with mental illnesses are still mistreated. Not while we are still killed by police who aren’t trained to handle situations of mental health crises. Not while more of us are in prisons receiving treatment than in hospitals. Not while treatment is so inaccessible. Not while mental illnesses are so misunderstood, and not while there is so much misinformation.

Not while we can’t talk about it.

And not while we can talk about it but don’t know what we’re talking about.

 

Saying Goodbye to the Affordable Care Act

I heard recently that an estimated 14 million people will lose their health care when the ACA is repealed. Now, that’s just an estimate, but I don’t think any reduction in the total could make this any better. The scariest part for me is that I might be among those 14 million people. As a poor Mainer, surviving off SSI only, which is just over 8,000$ annually, I qualify for MaineCare. (MaineCare is Medicaid) Not only to I qualify, but I rely very heavily on it. The cost of my medications alone is over 1500$ a month. That total excludes the cost of treatment, of possible ER trips, and possible psychiatric hospitalizations. Even if I could afford to pay for healthcare I could never, even with it, afford my current treatment.

Now according to an article published in the BBC just four days ago called Trump Health Bill: Winners and Losers, the people who will benefit most from the ACA repeal are the rich and the urban, along with young people paying for private insurance.

Unfortunately, I’m not any of those.

This is what the BBC had to say about the people who will get hit the hardest, (not shown here is the paragraph about the elderly who are included in the list of socioeconomic groups that will be most affected).

Poor: The new plan would roll back much of the provisions put in place to protect low-wage earners under Obamacare. It would mean significantly higher premiums and reduced tax credits for middle and low-income earners. It would end the expansion of Medicaid, which covers low-income people, and overhaul the entire programme. States would be sent a fixed amount of money per Medicaid enrolee, also called a “per-capita cap”. The additional federal funding that covered expanding Medicaid would be eliminated by 2020, leaving states to bear the responsibility of making up the difference in money. States could then reduce eligibility or cut provider payments. Enrolees making around $20,000 a year at any age would be hit the hardest, according to Kaiser.

Rural: Another group that would lose under AHCA is people living in rural areas, where the cost of coverage tends to be higher due to fewer hospitals and insurers. Research shows that health insurance premiums are typically more costly in rural counties and states. Rural residents also rely more heavily on public insurance than those living in cities. While Obamacare took local healthcare costs into consideration, tax credits under the Republican plan are the same as in states like Alaska and New York. If premiums grow faster than inflation over time, the proposed tax credits will grow more slowly than those under Obamacare, according to Kaiser. Medicaid cuts could also be harmful to rural hospitals, which are already struggling to keep their doors open.

On top of all of this when the ACA is repealed, as I am pretty sure it will be, Trump’s administration’s plans to cut funding to mental health and substance abuse treatment. According to this article by Psych Central, “in 2020, the plan is to move away from open-ended entitlements in Medicaid and switch to a per-person allotment to the states. This eventual change would likely have a devastating impact on the people who are covered under Medicaid — generally the poorest American citizens. The cap per individual in 2020 would be based upon how much funding the state was receiving in 2016. This effectively means the states will be working with 4-year-old, insufficient budgets — all the while healthcare costs continue to climb.Worse things happen after 2020, too, especially if you have a mental illness or substance abuse problem and use Medicaid to get your treatment. Beginning in 2020, the proposed GOP plan would eliminate the current requirement that Medicaid cover basic mental-health and addiction services in states that expanded it. Instead, the feds will allow each state to decide whether to include those benefits in Medicaid plans. In order to keep their Medicaid costs down, many states would rollback such coverage.”

I’ll be blunt here: people are going to die.

And I could very well be one of those people.

I’m terrified. I’m so terrified last night I say in the bathroom and cried. I cried for the 14 million poor and elderly people who will lose their health care for no reason, and I cried for myself, who will most likely loose my health care and have to go off my medications and say goodbye to my mental health treatment. It’s almost unbelievable…no I take that back, it is unbelievable. It’s murder. It’s unethical.

The worst part about it is not being able to do anything. I just have to sit here until I lose my healthcare and then continue to sit around until I loose my mind.

People are going to die and nobody can do anything about it. 

What it’s like to Need Unmediated Medication

I didn’t know I was going to grow up to be Schizophrenic. I guess the warning signs were there. Depression, anxiety, self-harm, magical thinking, self-isolation, and poor social skills. A preoccupation with death and a delusional fascination with religion. Even so, at eighteen and hardly an adult, the transition from neurotypical to Schizophrenic broke me. But then, no one plans on growing up to be sick. Young adulthood snatched away from me by madness and medication. Frequent psychiatric hospitalizations and a few suicide attempts dotted my calendar. Eventually, my illness changed from acute to chronic. Four years later and I’m twenty-two going on twenty-three. I’m a college dropout. I’m on disability. I take medication five times a day to function well enough to live on my own. But after all the medication I still hear voices all day every day. I can’t read, and I can hardly write.

These days I walk the line between Bipolar and Schizophrenic. I exist in a gray space called Schizoaffective. I spend most days at home with my two tabby cats, while my husband goes to work. I don’t feel young. I’m tired. I’m… sexless, achy, and confused. My brain feels like it’s full of sand. And my psychiatrist says that it’s normal, that it’s all normal. Normal for a Schizophrenic. It’s the anti-psychotics she says. She says that when my brain feels full of under-cooked bread that it’s normal too. And like so many, many Americans, I hate medication.

Or… I used to.

Because while it may have taken four years to find the right medication. I can say now that Seroquel has saved my life. I lost almost everything to Schizophrenia and then Schizoaffective Disorder. Nothing seemed sacred. Not family, not friends, not time or perspective, not school or reputation. Nothing.

The last thing to go was my faith, which I lost right around the same time I started anti-psychotics. In that way I was different I supposed, while most people find faith in dire times, mine was unredeemed. Which meant for me, and so many other Schizophrenics, that God was a chemical imbalance. A product of the over-pruning of the synapses in my brain. A product of delusions and hallucinations. Of my ill-equipped Schizophrenic brain trying to make sense of this tremendous epigram. This transition into a faithless existence happened slowly at first and then all at once. A building reversal in which I found myself back peddling. Scampering away from what had been a fascination with religion.

Yet with this new high dosage of antipsychotics, I felt a calming inside of myself. A settling of the churning psychotic debris. And although I wasn’t free of Schizoaffective Disorder, these days I am less of a slave to it.

So why do I still hate my medication? Why do I loathe my pills as I organize them into weekly and daily sections? Why do I frown as I set alarms to remember to take them? Without them, I would become an incoherent mess. The CDC says that almost fifty percent of us (48.7%) take at least one prescription drug. Strange that antidepressants are one of the most frequently prescribed medications. Yet, it seems like everyone condemns prescriptions for mental health conditions. “Big Pharma,” they say. “You don’t really need those meds.” “You could stand to come down a few milligrams.” “Aren’t you cured yet? After all those medications you take?” “Those meds turn you into someone else.” “Nobody needs antidepressants.” “Get out more.” “Exercise.” “Just be happy.” “It’s all in your head.” “Get over it.”

But to myself, I say “It’s not that easy…don’t you see…it’s not that easy.”

A patient cured is a customer lost…

Don’t you see it’s not that easy….

How can I practice acceptance and accept my antipsychotics in an age of pharmaceutical phobia? From the beginning of my journey with mental health medications, they were always bad. After all, how could I be myself if my medications changed the way my brain worked?

But it’s not that easy. You don’t get to see what an unmedicated Schizophrenic looks like. Unless you’re the one who is going to drive me to the ER in the middle of the night. Unless you’re the one calling 911 because I’ve stopped making sense and I’ve told you I’m going to kill myself. Most people haven’t seen me hiding in the closet. Covering the windows. Tearing apart my living space looking for hidden cameras. Most people haven’t heard me yelling about voices, or aliens, or the things that try and read my mind. You haven’t seen me restrained. Or in the back of a cop car. Or in the psych hospital with bandages covering my forearms. You haven’t seen me getting shots of Haloperidol in the middle of a psychotic episode. You weren’t there the first time I overdosed and you weren’t there the second time either. Few people I’ve let see this side of me… and because you haven’t I’m going to venture to say that you don’t understand.

So, to the people who think that ‘Big Pharma’ does nothing more than create customers, you forget the lives it saves.

You forget that it saved my life.

Though maybe you didn’t forget, maybe you just don’t know..