I ended up going back to the hospital with “stroke-like symptoms” again the day after that last post. ( I actually wrote it on Feb. 3.) That little demon doesn’t just whisper that I shouldn’t be alive. He also tells me to hesitate when I am having a neurological crisis.
“Oh, don’t bother everyone with these silly symptoms. They will go away if you just stop being afraid … or take another blood pressure med … or get some sleep … or listen to some alpha-induction recordings.” He tells me, “Be afraid of going to the ER because you have no insurance, and can’t pay! You’ve already got two former hospital stays to pay for!” He tells me, “This happened in September, and it wasn’t another stroke. You’re just being hysterical!”
Well, listening to that demon was a huge mistake in October 2007. I ended up having a *much* worse ischemic attack than I would have if I’d only gone to the ER when the symptoms began. That hesitation is why I developed Central Pain Syndrome.
So listening to that demon literally brought me to Hell on Earth – where the body is continually wracked by the burning torment of constant fire, and yet is never consumed. Every six hours, when I take another gabapentin to make sure that the pain dial stays down around “3,” I should think about that eternal liar, the evil seducer, the sibilant whisperer who has brought me nothing but self-loathing and punishment. I reject him with all my being:
Get thee behind me, Satan.
So I ended up going back to the ER. I am extremely fortunate to live in the town next to Robert Wood Johnson, which is a huge and extremely modern research hospital. Every time I stay there, on 7T (the Stroke Ward,) there is some new piece of equipment. (As the woman who operated the portable carotid echo machine told me, “They love their toys.”) Part of me resents the constant, almost metastasizing growth of the hospital. It has swallowed whole neighborhoods, blocks at a time, in its incessant building and development. (The venerable Hungarian-American Athletic Club, which produced so many Olympic fencers, was “eaten” by the construction of a Cancer Genetics building, for instance.) But the greater good is saving lives.
I certainly felt that on Friday morning, when I walked up to the Triage Desk and said, “I’ve had a stroke before, and I’m having stroke-like symptoms.” They whisked me right into the “Acute Neurology ER” (there are different wards in the ER department for the several types of acute cases that come in: Trauma, Heart, Cancer, Diabetes, and Neurology,for instance.) Then immediately off for a CAT scan, and later for an MRI.
Just as in my Labor Day “visit,” it turned out that I was not having a new (“acute”) stroke, but a “recrudescence” of the 2007 one. My uncontrollable and highly labile hypertension essentially re-injures the old injuries, much like a hernia can always re-open if you life a box the wrong way.
But it turned out to be a blessing that I *did* show up that day, since I had a “potentially fatal potassium deficiency.” Who knew? It’s called hypokalemia, and can cause hypertension, confusion, weak muscles, trouble breathing, arrhythmias, and heart attacks. So for three days I lay on my pallet (calling it a bed is pure spin), and had a “potassium drip” forcing burning acid into my left arm. It was miserable to experience, but it cleared up my stroke-like symptoms. What causes my low potassium levels? It’s a medical mystery – just like the HBP. If I had insurance, I might be able to find out the cause. But since I am uninsurable, I will just have to get rich (ahem) and pay for all the tests myself (right after I pay for all the former hospital visits.)
I wrote a great deal while I was in there, mainly about the people I met: the other patients, my roommates, the nurses and CCTs and the staff. 7T is a calm, quiet, supportive – even loving – floor. Approximately half of the patients don’t speak or even move; they are sleeping, or in some sort of unconscious state.( Most of these patients will be transferred to nursing homes once they are stable enough to transport.) The other patients – the ones who will leave to either a rehab facility or to return to their homes – need the comfort and reassurance that the 7T environment provides. More than that, the *families* of these patients need that. When the families are confident, having faith in their loved ones’ ability to recover, that communicates itself directly to the patients. That seed of faith planted in the patients grows into their own recovery. Since these are brain injuries, the *belief* that one can be cured actually cause the neurogenesis that will propel the patients’ recovery.
Almost the entire staff of the floor is female. The nurses, CCTs, and staff all work together harmoniously, sharing tasks and watching each others’ backs. I asked one of the nurses about it. She replied, “Oh, you noticed that? Yes, the male nurses don’t last long. The last one we had here transferred to the ER because this ward was too dull. So we don’t have any men here – unless they are gay. Those guys stay.” (My mind immediately flew to the considerate young man, my AM CCT that day, who’ said that he worked there for 6 years and “loved it.”) Actually, everyone I talked to who worked on the ward said they loved it – even the woman from Haiti, Elza, who emptied the trash bags.
When I get a bit more strength, I should transcribe my notes about Elza, who lost her mother and two nieces in the Haitian earthquake. I should write about my roommate, the 89 year old woman from the Ukraine, survivor of the Blood Lands Slavic extermination, who looked literally like a corpse when I first was moved into the room – and who was brought back to life by the determined attention of one nurse, who cared for her constantly throughout the first night.
I should write about Super Bowl Sunday Evening in the Stroke Ward.
There is so much to tell. Is there time to tell it all?
That’s the doubt-fear that the demon is using now: “You are going to run out of time. At any moment, you could have another brain-pop. It could leave you even more disabled, or unable to speak and type and write, or paralyzed, or just dead. You could end at any moment, with your life’s purposes unfulfilled.”
For decades, I wondered what my “purpose” was. Why had I been spared back when I died at 6 weeks old? Why had I endured so much, struggled so hard? Why had I been blessed with intelligence, education and a middle-class White existence in a safe and free country? What was my purpose?
For the first twenty-five years, it was caring for the members of the family I was born into. Once Jake was born, it was caring for my own family. Careers came and went – each originally promising satisfaction and opportunity. Some grew stale quickly, revealing themselves to be crass and even criminal. Their great enticement had been their financial remuneration, but they began to feel like prostitution in a different form. Some were satisfying intellectually or philanthropically – but they didn’t pay enough to live on. One was enjoyable and paid well, but was ultimately just buttressing a consumerist culture I knew was not sustainable. One – teaching at the University level -seemed like my “true calling,” but directly conflicted with my family – and I had a nervous breakdown as a result.
Then my health began to fail, as my body began to attack itself. My ability to work a full day – or even any schedule at ll – diminished and disappeared with my stamina. No longer could I afford the luxury of having a vocation. It was difficult enough to find a job that would employ me and that I could build a livable schedule around.
Finally, I had my stroke. The CPS followed it immediately, with all its attendant difficulties. My health remains precarious. Our business remains precarious, as well. Paying the mortgage each month is a challenge and a little victory. There is never a break for Jack. I fear for *his* health – the stress and driving demands are extreme.
Yet it is now, after all these crises, that I see goals that I want to accomplish – goals that propel me to get up every day, to sit at the keyboard, to work, finally, on a task that would be a legacy.
I want to write: a pain autobiography, that discusses all the sorts of pain over the past 50-odd years, and what its lessons have been. The story of a Catholic family that collapsed under the weight of simple human frailty. The narrative of the decades from the 1960s to the 2010s – from the height of the American middle class and its hopes in a “better tomorrow,” to the present sense of hopelessness under an Corporate Plutocrat Oligarchy. A personal diary of how political events from 1960 on affected a child, a woman, a worker, a wife, a mother – The history of two families – my husband’s and my own, one Black, one White – how they came to this land, how they struggled to raise their children, and the dignity and strength that everyday Americans had to embody so that we could be here today and have our son.
The story of a spiritual certainty, stemming from that early non-verbal infant’s experience of death, and how it resolved, though decades of searching, study, and meditative prayer, into a working faith. How faith is the most personal of human achievements, and perhaps the most difficult to achieve.
Then there are all the other stories and histories that I want to bring into popular narrative: the true story of Jamestown, where America really began; the story of the inhabitants of the 17th Century Irish village abducted by the Barbary pirates and brought into Algerian slavery; those great 19th Century realist American novels I love so….all those call upon me to work upon them, *now.*
But first of all, there must be the achievement of the goals for the CPS Alliance. If there is ever going to be a cure for this scourge, it will only come from patients who push for it. We, the patients, are going to have to educate both the medical profession and the general population as to the nature of the disease, its causes, and its truly remarkable occurrence.
This is my first task, because I am still strong enough and mentally capable enough to work upon it. Who knows what may happen in a few years? For many people, the pain levels increase; their formerly efficacious drugs stop working. They end up on mind-numbing opiods. (I saw their attraction when I took Percocet after my root canal three weeks ago, and could actually move again.)
I must fight for the ones who cannot fight, whose pain cannot even be comprehended by people who haven’t suffered it. I have the responsibility to bring their story to the physicians who have no idea what they are dealing with when a patient presents with CPS symptoms, the physicians who scoff and doubt and even put the patients into psychiatric facilities.
I must militate because I want a cure in my own lifetime.
So get thee behind me, Satan! Take your doubt and fear right back to Hell! I will not follow you there. I know enough of Hell in this lifetime to firmly resolve that I will not spend Eternity with you.