Fast and Without Too Much Sadness

   Red curtains move in the wind of an open window. Warm wind then, on warm sunlight, peers through. Long sunlight fingers push aside the air. Dust floats. My cats like to lay in this type of sun and I like to sit with them, letting my socks get warm and warm my feet. Outside there are bugs and branches and leaves turning red. The play-dough scent of apple branches being pruned from their trunks evaporates around me even as I write. The smell of hardwood. The smell of sweet apple flesh and hazelnut candles. Pine trees at the top of the yard are green and settle their stout bodies against the cooling topsoil. People lean on one another in the face of gathering winter. For now, it’s still autumn. For now, we still have to use all our apples up and fix the snowblower and stitch our jeans and prepare the house for colder weather.

   The days grow shorter and darker and before we know it snow will arrive and we will be buried up to our necks in it. The cats will stop shedding and pack on some winter weight.

   The weather allows for hot showers now and I take ones that border on the cusp of being too hot. When I shower I do it at night with the lights off. Letting the water rinse the coffee grinds and chewed nails and dried skin away.

   Odd to think that I still don’t know myself. After all this time alone we never became acquainted. I am an introvert afraid of other people. This includes me.

   When I look in the mirror I don’t see myself anymore. I see a self made new by flesh. By antipsychotics and antidepressants. By new scars and new wrinkles and new stretch marks. I see a new body and a new brain. But I don’t see myself.

   It’s hard, having been so many things. Flashes of an aging young adult who never got to know herself. I was a kid once. A kid who always kept my hair cut short. A kid who needed braces but never got them. Once upon a time, I was a tomboy. An arm wrestler in the fifth grade who could beat the boys. For a while, I was a confused preteen. Baggy pants and tight shirts. A teen who didn’t want to have sex. An anorexic. A kid who, while good reading books, was poor at reading people. I obsessed over spirituality and religion. Questioning everything to the point of insanity.  I was homeless. I was a runaway. I was unhealthy. Underweight. Sick. Bedridden. Paralyzed. Non-Epileptic (PNES). Dependant. A smoker, god forbid. Someone buying drugs in the back seat of a station wagon that wasn’t my own. Having sex without enjoyment. An all A’s student attempting suicide in the middle of the night. A self-harmer. A frequent flyer at the hospital. Psychotic. Manic. Depressive. Confused. Boney. Absent. Schizophrenic. Bipolar. Schizoaffective. Catatonic. A nighttime-midnight-in the dark-showerer. A nighttime-walker. Empty. Lost. Someone who wished they were dead but ended up happy to be alive (well most of the time.) A college dropout. I used to be someone who listened to the voices. Someone who followed the hallucinations.

   And then came the antipsychotics and all the things I’d ever been came fullstop. Now I’m soft and bitter and my brain is full of Seroquel soup. I’m caught between meds having saved my life and having destroyed it. Of course, I should say that Schizoaffective Disorder did the destroying. Sluggish waves with no force behind them turning my psychotic wheels. Caught between wanting recovery and wanting destruction. For being happy for new my health and being spiteful of it. Between being accepting of antipsychotics and believing the benefits to be disingenuous.

   Out of all the things I’ve ever been I’ve never known any of them for very long.

  I want to see that change but I can’t say I know for sure that they will. Of course, this year went by faster than apples are falling from their branches this autumn. If I close my eyes and hold my breath and take my meds perhaps another year will move on like this one did. Fast and without too much sadness.

 

   

 

Advertisements

 

tumblr_orabipYacQ1uatsebo1_540

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.