ON LOSING A HEALTHCARE PROVIDER

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Years ago, I needed a new doctor for my now misdiagnosis and I found a specialist for that syndrome, which was odd for this city.  He was a PM&R physician and did a very thorough exam, but somehow was yet another provider who failed to realize that I actually had a genetic disorder: Ehlers-Danlos syndrome, classical type (EDS).

I remember that at my first consultation and after my exam, he told me straight out that he had no magic pill for me, but that what he could offer was compassionate care.  It was what I—a patient with a chronic, painful, and debilitating illness—needed to hear, even if he thought I had something else.

No one knows what happened, but a year later, all of his patients received a letter stating that the doctor would no longer be in practice there.  No other information would be given and I was transferred to an associate, but that was the first time I had a complete meltdown over losing a healthcare provider.

Prior to getting sick, I just had the doctors most have and maybe saw them 6 times a year for annual exams, refills of a few medications I took, and then the endless upper respiratory infections I’d get from every cold, which only turned into massive bronchitis because I was too busy working to go to the doctor.  But, things change when you get a chronic illness. I now have more than 20 medications, I have over 10 specialists who largely do nothing for me, and I spend 3 or 4 days a week in some waiting room, which literally makes me sicker.  When healthcare providers become your entire life, and not by choice, losing one is utterly devastating as the process of finding another and dealing with records and forms I can’t see and every other hurdle you have to jump over in the U.S. is an utter nightmare.

I have been to 4 doctors for my EDS, formerly called something else, since I lost the one who disappeared and then the entire practice closed.  They were all inept or rude or left me waiting hour upon hour or all of the above. One, who I absolutely believe was an anti-Semite based on his country of origin and how friendly he was with everyone but me, actually said something so rude to me that a tear fell down my cheek in the exam room, and I wish with all my might that he had never seen that.

Right before my corneal surgery and my diagnosis of EDS last year, I found another PM&R who was willing to see me, as most weren’t interested in the misdiagnosis.  I had come from a rundown and horribly unprofessional practice where my doctor literally walked out the front door while I was waiting for him. I really didn’t know him as he spent maybe 2 minutes with me signing prescriptions and nothing else. The staff were rude and complacent and I was months behind in scripts for physical therapy and they could care less.

I knew this new doctor I had was smart and he actually questioned my misdiagnosis, but he seemed rather uncaring and disinterested by my second appointment like the others. I couldn’t see him well, but noted that he preferred to stand on the opposite side of the room and wouldn’t make eye contact with me as I can see color, like the sclera of the eyes.  If he has a social phobia, then he should have gone into research and not private practice.  It was a place to get my refills and scripts for physical therapy, which is how I view most providers in my life: robotic people who do the basics of their job while I get an extended stay at the Hanoi Hilton courtesy of my broken-down body.

One day, I was told I’d be seeing the nurse as the doctor was busy.  Well, that figured.  Unlike the doctor, his nurse was actually a person and she was friendly and talked and asked questions and was concerned.  So, I became her patient and didn’t see the doctor anymore.  I always took the last appointment since I can’t wake up and am really slow to get ready due to my pain and stiffness, and she would spend over 30 minutes with me and it felt like I finally wasn’t just a number or a nuisance anymore.

We tried a few other medications without much success as usual, she attempted to appeal the insurance issue with my physical therapy being cut-off, she was researching EDS as fast as I was, and since she was from Ohio, she always said she wished she could just stick me on a plane and send me to the Cleveland Clinic because she was so frustrated, and not by me, but for me.  I always left my appointment feeling better, even if there was no magic pill.  I had compassionate care again.

I’m on a 3-month schedule with the practice now and I had an appointment earlier this week.  There was a huge plumbing issue with the central line that affected my bathroom here at the motel, so I was running a hair late, but had enough time to get to my appointment if I drove fast and everyone does.  I get that I can’t see well, but I can drive better than the 20/20 crowd here and had my sclerals in, with enough lubricating ointment to make them somewhat tolerable, but it was like someone smeared Vaseline over the windshield.  The clinic is in a nearby town, so it’s a bit of a drive, but I can do it if I really try since it’s not in the direction of the sun.  What I didn’t expect was an accident on the arterial that leads to the freeway that created a backup for miles.

I called the clinic to let them know I’d be late due to the accident, but not more than 10 minutes, as everyone gives you a 10-minute grace period from my experience.  I was told that the doctor had to leave to meet with his lawyers and so I would have to reschedule.  I didn’t understand and had about gone through the wringer waking up earlier and getting ready and just driving.  I explained that I didn’t see the doctor—that I saw his nurse and I’d never been late.

It was then that the rude receptionist told me she was no longer at the practice.  It hit me like a ton of bricks, and she made up a lie as to why she was gone.  I knew I needed refills soon, so I was pleading with her, and she told me that I was talking in circles.  I just kept trying to be the squeaky wheel, but could hear my voice cracking and then hung up.  I was by a shopping center, so I pulled into the parking lot and just lost it.

How would I find my nurse?  Who could I talk to that would understand how complex chronic illness is?  Who would offer me compassionate care?  Certainly not anyone I currently see and not the doctor there.  My counselor, who is supposed to help me, has been putting me through the Inquisition for weeks and I rip the cuticle off my thumb in every session from the anxiety he’s causing me.  I felt abandoned, like I have felt my entire life.  The feelings about the former doctor disappearing came flooding back, as did everyone else in my life who had betrayed me: my family, my traitorous, best friends, the guys I had been with, the entire world.

I’m tired of this disease and the subsequent vision loss.  It’s been 12 years and there’s no hope.  The cure is not coming in my lifetime and the degeneration will continue—that much I know.  A million thoughts were flooding my mind and I went to a very dark place while sitting in my car, which is not uncommon—I’ve had enough and there is no meaning in my endless suffering.  I couldn’t breathe and was on the verge of having one of my major panic attacks.  I called the only person I know here—the one who gives me rides here and there—and asked that he take my cat, Moush Moush, but he wouldn’t.  I was begging him to take her to no avail and in the end, it was Moush Moush who saved me again, just like I am trying to do for her.  I promised her that I’d never leave her, and I won’t.

Very few people will understand this post.  A healthcare provider is someone most see for an infection or an injury or an acute condition that will either get better or kill you. There’s a gray area where those with chronic illnesses that steal your entire life live, and that’s my land.  I have staked a claim and it’s a lonely place that hurts my body and my mind. My nurse brought more light in, but now she is gone, like so many before her.

COCONUT-LACED MEMORIES & HOW PHYSICS IS RUINING MY LIFE

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“What is your depression like?  We’ve never discussed that,” asks my newer counselor at the not-free free clinic. They are post-graduate level interns, which hasn’t done wonders for me in the 2 years I’ve gone there.  At least they know that depression accompanies chronic illness like a fever accompanies the flu.

“It’s like a dark cloud over my head and everything goes black—the light at the end of the tunnel went out years ago,” I reply. “Then,” I say, “I go to the past—before I got sick—when my life was good.”

I get a stare.

“What about the future?” my counselor asks.

“I never go to the future anymore—it’s too scary.  The future means more illness, more pain, more medical bills, maybe living in my car next month,” I answer matter-of-factly.

My counselor says, “Most people are stuck in the past and the future.”

“Not me,” I reply back. “I just go to the past and I’m stuck with the present, but I never go to the future.”

“The past is just an illusion—it doesn’t exist,” states my counselor.  It feels like I have been socked in the face.

“WHAT?” I reply, and give a thousand examples proving otherwise.  My counselor’s explanations make no sense while my brain goes through those thousand memories like still photographs in my mind.

I’m supposed to appreciate small things in the present.  I already gave the example of my cat weeks ago.  My eyes wander in the small room and then to the bushy, palm tree blowing against the window that I can see fairly well.

“I like that palm tree,” I tell my counselor. “Those trees have the fronds that look like a fan.  You need the fan-shaped fronds to build a palapa—those thatch roofs made of palm fronds in México.  I had one built and they had to go high up in the jungle to get to those trees.”

“You found something simple that gives you joy,” responds my counselor.

“It makes me happy because it takes me back to a better place—a time in my past,” I reply back.

I leave the appointment with my head swirling.  Did I have anything left?  Where was my past if it was just an illusion?

I came back to the motel and Google spied on an ex from over 15 years ago who I’d been trying to find forever—and finally did.  A little trip down memory lane.  Then, I was even more depressed that the only Jewish guy I ever dated—even if he was so neurotic that I dumped him—hadn’t turned back into the Super Size American he was before I met him at 22 and that he was married and actually had his good hair still. His face had aged and I really didn’t recognize him very well, although I have a photo of him somewhere from the brief time we dated so long ago.  Was the past an illusion, after all?  He wasn’t the same.  How different do I look?  At least his wife was a hot mess—he used to tell me I looked like a supermodel, minus the height thing.  Then, I had my usual meltdown.  So much for memory lane.

So, today I Googled this concept that makes no sense in my mind: the past is just an illusion.  An illusion is a rabbit in a magician’s hat.  I figured this is what I get for going to the not-free free clinic.  It’s actually physics it appears.  I underestimated my counselor.  Albert Einstein first described it in his theory of relativity.  Stephen Hawking and all the big physicists follow the theory that all time is an illusion: the past, the present, and the future.  Einstein said, “The distinction between the past, present, and future is only a stubbornly persistent illusion.”  For those science-types who would like to learn more, you can read this boring article.

I don’t have any interest in the theory of relativity.  It’s not going to give me my life back, which is all I really care about anymore, aside from my 3-legged cat.  I hate physics and I never even studied it.  Physics is that weird uncertainty principle on that huge blackboard in A Serious Man that Larry, the physics professor, dreams about—as seen in this clip. Throughout the movie, he always asks, “Why?” and never gets an answer.  It’s a Jewish thing—this need to know why all the time.  Maybe I would have done well in physics.  I was only one of two students in my class to pass logic in college and with a 4.0.  My friends watched as I wrote 20-something page solutions and were convinced I could crack codes for the government.

Maybe physics is logical, but it seems abstract—like why I can’t see anything due to keratoconus despite my good visual acuity per the eye chart.

“High order aberrations,” said my dry eye doctor when I decided to ask him 2 weeks ago due to my inept corneal specialist. “It’s physics.  Let me give you an example.”

He mentioned waves and I was already lost.  I even took oceanography.  He drew side views of misshapen corneas like mine, which I’ve seen and I understand.  I’m a visual learner. Aberrations are refractive problems, which leads to less-than-perfect vision.  In my case, light isn’t refracted correctly due to my Rocky Mountain-shaped corneas, or one of them after cross-linking.  This creates a high order aberration, or more specifically, a vertical coma.  Due to keratoconus, I also have nearsightedness and farsightedness, which are low order aberrations.  It’s all just physics.

“Why can I read 20/40 then?” I implored.  Actually, I read 20/70 that day, but the DMV doesn’t need to know that, or that I drive in two lanes.

“Well,” said the good doctor, “The exam is under optimal conditions—it doesn’t represent how you see in real life.”

Finally, an answer to my why.  My distorted vision isn’t an illusion—or is it?  My brain remembers that there is only one moon, not the several moons that I now see in the night sky. Maybe my entire life has become an illusion.

This is what I know.  I am who I am because of my past.  The good memories gave me life and the bad memories made me a survivor in every sense of the word.  Some events from years ago are so clear they play like a video in my mind. Certain smells can transport me in time or bring people back from the dead.  The simplest things can trigger a memory from my past. They are as real to me as the present moment. No illusions and no smoke and mirrors.  The past is so tangible to me—it is alive for as long as I remember it.

I remember when my father was a dad.  I remember when I was a roller skating queen.  I remember when I had acquaintances and best friends and boyfriends.  I remember when I fell head over heels in love.  I remember when I went out on the weekends—every weekend.  I remember when I drank too much and I don’t care.  I remember when I had fun and laughed all the time.  I remember when I spent the whole afternoon at the mall.  I remember when I sat for hours people-watching.  I remember when I was in college.  I remember when I had old apartments in Seattle that I loved to decorate.  I remember when I was a good cook and could eat almost anything.  I remember when I read books and sipped soy lattes on the weekends in coffee shops in rainy Seattle.  I remember when those who are now gone were alive.  I remember when I enjoyed the present, but lived for the future.  I remember when I was an expat in México.  I remember when I had a life.

And I remember that every Sunday in my early 20s, when my business was closed like nearly every other in the pueblo, my stray dog and I walked to the puesto de cocos—the coconut stand—and I would buy un coco and the vendor would hack the top off with a machete, give me a straw, and my dog and I would walk to the sandy beach on the warm Pacific Ocean and I’d drink the water from my coco and talk to my friends while my dog ran free and life was as picture-perfect as a postcard.

This was real.  I lived it.  I can’t go back, but I can re-live it in my mind and I am someone again—someone who was healthy and pain-free and not visually impaired and didn’t stay in a motel and lived life to the fullest and could be anything I dreamed of.  That is where I go when the sky becomes black and the light at the end of the tunnel is still gone and there is nowhere else to go because the present is a nightmare I can’t wake up from and the future is a slow and painful death.

Physics answers the big mysteries of the universe and explains why planes don’t usually fall out of the sky.  It doesn’t delve into the human experience and try to make sense out of the nonsensical.  Isn’t that what counselors are for?

By the way, according to the theory of relativity, everything you just read is an illusion—it’s in the past now.

I dedicate this post to the memory of my beloved, paternal grandfather, whose yahrzeit—the anniversary of one’s death in the Hebrew calendar—falls today.  I lit a candle, said Kaddish, and made a small donation at sunset, when everything begins. This is what we do.  My grandfather was larger than life, the strongest man I ever knew, a traveler of the world, and as seen here, a self-enlisting Marine in WWII who fought in Okinawa and survived.  He died the year I got sick, but the smell of rye bread brings him back in an instant.