A Day in the Life: Stroke (of Luck)

The vision on my right side disappeared into blackness.

This past Monday morning, as I came upstairs from the basement with an armload of clean clothes, the entire right side of my vision disappeared, while at the same moment, an excruciating pain shot through my head, creating the worst possible headache one could ever imagine. As I reached the kitchen, I glanced at the clock on the microwave and realized that I could see only the hour—nothing to the right. Turning my entire body toward the right and looking out the left side, I was able to see the time—8:14am.

Apparently my younger son is right—I’m an under-responder. I thought perhaps I was having some sort of migraine, although I’d never actually had a migraine before. I’ve had so many issues with my vision ever since I got toasted by LASIK in 2001 that I’m accustomed to visual oddities. I took meds for headache and went about my business. I asked my friend to pick me up for our lunch date, given the lack of vision, which seemed to be returning by millimeters, and after lunch, we ran a couple of errands. By 3pm, I was home and ready to rip my brain out of my head from the pain. I took more Fiorinal, laid down for a bit, and when the phone rang a little before 4pm, I was happy to hear from my ophthalmologist returning my earlier call.

“This is not a visual issue. You need to call your neurologist—RIGHT NOW.”

Hung up, called my neurologist immediately. “You need to go to the ER—RIGHT NOW!”

I grabbed my down vest, my keys, phone and wallet, and eight hours after onset, I jumped into the car and off I went to the ER a mile away. I should have known after I walked in and explained my symptoms that something was very wrong, since despite a waiting room packed with groaning, moaning, unhappy people, they shuffled me back right away. I waited another hour until someone could see me.

“We’re going to take you for a CT scan in a minute, hon.” Off we went.

“We’re just getting a room for you now.”

Wait, what? “Are you admitting me? Why?” (Apparently, I’m not that bright.)

“We’ll just need to do some more tests in the morning. We’re going to give you some benadryl that will help you relax, and then we’ll get you upstairs once your room is ready.”

The minutes ticked by. Nearly three-and-a-half hours after my arrival, a kind soul came in and asked me if I wanted anything. A dry turkey sandwich quelled my hunger, and soon after, I went up to the fourth floor.

Hooked up to an IV and heart monitor, and with additional benadryl and the promise of further tests in the morning, I fell into a fitful sleep, interrupted by lightning striking in the left side of my head. Thankfully, my vision had recovered.

In the morning, I underwent a brain MRI, a carotid MRI with dye and an echocardiogram. And then I waited. An inedible lunch came and went and I waited some more. The afternoon dragged on with texts and calls from friends and family asking about me. Worried about my cats, I really just wanted to go home. An inedible dinner arrived (roadrunner, mushy carrot, mushier peppers) and I waited for someone to come and tell me what was going on.

Since I had arrived with nothing at the hospital, I called a friend to ask a favor—please bring my chargers and tablet, and a few personal effects. Once those arrived, I was able to brush my hair, change my undies (thank goodness!), and reconnect with the outside world—nearly human.

Around 7:30pm, I overheard chatting at the nurses’ station right outside my door. “Here’s what we’ve got in the pod tonight. 24 is a stroke, 26 is…..” I was 24. And that is how I learned I’d had a stroke.

An hour or so later, the hospitalist came to talk to me. That’s a thing now, doctors contracted to the hospital through a third party, who only care for hospital patients, running up your hospital bill with out-of-network providers.

H: “So, you’ve had a stroke. I’m putting you on Lipitor for cholesterol.”
Me: “Umm, no. Not taking it. I was on Lipitor for several years and it ate up all the muscle mass in my arms and legs. It took me a year of rehab to recover.”
H: “Well, your cholesterol is a little high.”
Me: “I’m taking cholesterol meds now, just not a statin.”
H: “They aren’t strong enough.”
Me: “Whatever, I’m not taking a statin. You may note that the patient refused medication as indicated.”

Thankfully, the neurologist on call arrived to rescue me.

N: “I see you’ve had a very small stroke. Your cholesterol is a tiny bit high. Are you taking meds? Any family history of stroke?”
Me: “Yes, I am on meds, but I confess to not having been vigilant about taking them regularly. I will do better now. And yes, my father had a stroke in his 70s. He recovered well.”

According to the neurologist, I had a tiny stroke; it’s nothing to worry about; it’s not likely to happen again; it appears to be a bit of an anomaly, since my carotids, my heart and my brain, except for the tiny area of the stroke in the left occipital lobe, are clear and unaffected. My diabetes, regardless of how well controlled, and a family history of stroke increase my risk. Not unexpected, but what I learned next stunned me.

Most often, vision loss of this sort with a stroke is permanent. MINE RECOVERED. Sheer luck.

The ongoing, horrid headache now presented the only obstacle to my release. Another night spent in the hospital, another breakfast—but this time, I was smart. When the dietary aide arrived, I asked her politely for a hard-boiled egg, coffee, cranberry juice, and some dry rice chex, rather than the usual disaster. (Not much you can do to ruin them.)

By noon, I was home, still had a headache, but didn’t care. I fed the cats, took some Fiorinal and aspirin, enjoyed a wonderful lunch my dear friend brought for us, and then I took a nap.

I slept like a rock last night (for a change), woke up with only a slight headache, and by 8am, was in the dentist’s chair getting a tooth capped. Life is good—and once again, I’ve been blessed by a “stroke of luck!”

P.S. I’ll be following up with my regular neurologist and my internist next week, and with the ophthalmologist later this month to check for any loss of visual fields. All is well.

A Day in the Life: Overexposed

Bronze leaf pendant with green cubic zirconia (Sherry Viktora of Out on a Limb), embellished by me with vintage copper and brass chain and findings, lampwork beads, crystal, and hand-formed, 14K GF S-clasp. (Request for donation declined.) (SOLD)

I recently posted a Facebook status about artists being asked to use their work for free, with the promise of exposure or promotion. Another artist had directed me to the website of someone who makes a living as a coach for “infusing spirit to transform your life.” Amongst the many items for sale on the site are CDs, which sell for about $22. The cover art on her CDs is quite nice. Psychologists have told us for a long time that people respond to things that are attractive to look at, which accounts for the overwhelming sales of books and recordings with pretty covers and wretched content. The problem here is that this person asks artists to donate their work, promising exposure and promotion. In fact, only two of those offerings provide a credit to the artist (the same artist for both) on the website, where the public could see it.

So this person saw the post, in which I mentioned they had asked another artist friend to donate the use of a piece of artwork, with the promise of “promotion.” (“Oh, it will be great exposure.”) The artist declined, but our conversation made me think about all those times over the 46 years of my creative career that I’ve been asked to donate my graphic design, writing, editing, handmade jewelry or fine art and promised great exposure. As a reasonably successful artist, designer and jewelry maker during that time, I have always been generous, donating at least several times each year, items which sometimes have a retail value in the hundreds of dollars, far more than the cost of materials (which is all the IRS allows artists to deduct from our taxes). Sometimes, I even get a thank-you note. However, in all the years of donating my creative talents, I have yet to get a paying job as a result. Turns out, the paying jobs go to their friends or to high-priced, big name firms, whose work is no better than my own or any of the countless other professionals who are asked to donate.

Let’s just say that exposure doesn’t pay the electric bill, nor does it put food on the table. If you’re really serious about promoting an artist whose work you’d like to adorn your project, pay them for it and commence with the promotion and exposure. Put yourself in our shoes, and imagine this:

Suppose I ask you for a free CD from your website for a workshop that I’m planning to hold over the course of a year or so, for which people will pay to attend, with the promise that I’ll promote you and you’ll get lots of exposure. Now suppose that no one buys your CD as a result of all that exposure over the course of a year, while I’m making money using it. Now suppose that you are asked once a month over the course of a year, every year, for free products, with that same promise of exposure/promotion. How likely would you be to say yes, knowing that you have sold nothing as a result of your previous generosity, that you have bills to pay, and knowing that you will be asked again and again? This is the life of an artist and creative. It just really doesn’t do it for us.

 

This sort of behavior indicates to me that the person making the request either a) has little to no concept of what goes into producing a creative work, b) just doesn’t care and has no respect for creatives, or c) is solely concerned with making a buck for him or herself at someone else’s expense.

This person to whom I referred contacted me and accused me of posting cryptic messages. There was nothing cryptic about the message, but apparently I hit a nerve. I responded and mentioned  the above scenario. The response to my message was about as angry, negative and lacking in spiritual transformation as it could have been. “Your sales or non-sales of your work as an artist has everything to do with your mindset: what’s going on between your ears. Anger, resentment, beliefs that people are taking advantage of you, beliefs that you can’t make a living, beliefs that as an artist you will always be poor, attacking people who have a thriving business as being thieves or whatever you want to see me as, is exactly what keeps you broke, poor and miserables (sic)”, and ended with this gem: “Good day, and go spend time fixing your mind, instead of attacking individuals who promote art.” I laughed out loud, and in my reply, suggested, “You go work on your own. This is one of the most negative, least transformative things I’ve read. PS. I am neither broke nor miserable. Sounds like projection to me.”

P.S. I asked whose artwork formed the banner on this person’s FB page. No response to that, but I have it on good authority that the artist was neither asked, nor did he give permission to use it. That, dear readers, is called theft of intellectual property, also known as stealing. And that is not a very “spiritually transformative” thing to do. And if I’m mistaken, I’ll gladly print a retraction.

A Day in the Life: Wandering Thoughts

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Snowing today for the first time this season, the world is white and quiet, a peaceful scene. Still in the trough of the mental health roller coaster, I resist the urge to interpret what seems patently unreasonable in some reasonable, logical way, and instead, I take pictures out the living room window through the mini-blinds, stare out at the falling snow, and work at emptying my mind to allow peace to flow in. Obviously, since I’m writing this, I’m having no small difficulty with the blank-slate-mind thing.

I don’t sleep well most nights. Last night, as I lay in bed hoping for sleep, I thought to myself, “Why couldn’t I have a nice, simple, happy life like other people?” And then I tried to think of even one person to whose life I could point and say, “Yep, that’s what I mean.” I laughed, reminded myself that life is messy—sometimes, unmanageably so, other times, not so much. I telly myself that this, too, shall pass, as it always does, that one way or another, things will work out in the end (but not necessarily the way I’d like them to), and if they don’t, well, it’s not the end. The universe does work, but beyond that, I have control only over myself—my thoughts and feelings, my behavior—choosing whether to sit around being miserable and afraid, or whether to choose happiness and engage my being in that pursuit.

I decide to give my disquieted mind a rest this afternoon, so I watch the snow accumulate as the fat, luscious, silent flakes fall, awed by the power and beauty of nature. Not wanting to run up the gas bill by turning up the furnace, I sit with my feet encased in three pair of socks, leg warmers over my leggings, hugging myself in a blankie against the cold, and begin to relax and let go a little. I look out across the street and see the neighbor boy running around in the snow with bare feet and short sleeves, obviously looking for something. He retrieves a pair of sneakers and disappears indoors. Once again, it’s a pleasant vignette, not unlike an old-time Christmas card, albeit without glitter.

I remember that yes, I do have to venture out in this later for a birthday party, but I’ve still got two hours—time for a nap. The trough no longer seems so deep.

A Day in the Life: Troughs and Peaks

There is no undo button in life, but oh, how I wish there were.

Raising a child with “issues” is a bit of a lifelong roller coaster ride of heartbreaking troughs and amazing peaks of joy. Unfortunately, after a few years off the roller coaster, the ride has resumed and we have fallen into one of those gut-wrenching troughs. I let down my guard, lulled into a sense of complacency and almost normalcy. Thanksgiving morning the roller coaster roared into action, immediately plunging us into the abyss, a sucker punch to the gut.

A misunderstanding between him and his younger brother precipitated a serious meltdown, during which their voices were raised, drama prevailed and my child, now fully adult chronologically, cursing his way out, took off to return to school hours before dinner, leaving me behind. He called me several times on the road, obviously distraught, but because I never said the right things—there are no right things to say when he is so overwrought—he hung up on me each time. I assumed he would calm down and call me sooner or later, as has been the pattern, but he did not. Worried sick about him, knowing the long list of those issues, I did not call because I figured he did not want to talk to me and would not answer.

Nearly a week passed. He blocked my messages, ignored my texts and the voicemail I left for him asking him to call me about some important business. I finally resorted to posting on his Facebook page: “Please call me. It’s important.”  Later that evening he called. He was having a hellish week, had placed himself under observation, and not allowed to be on his own/alone, angry that it took a letter that had arrived at my home for me to call him. (Why hadn’t I called to check on him, to find out how he was doing?) He had me open the letter, we resolved the issue, which involves me making a  payment to settle a slumlord’s claim—money I don’t actually have—because he’s a student and has no money.

Then came the onslaught. Somehow, this is all my fault for not making his brother do, say or behave in a specific way over the 33 years of their lives together. Every perceived hurt, every memory (many faulty), every spark of anger and fear, laid in my lap. No mention of the daddy who abandoned us without so much as a goodbye so many years ago, and all the rage that still engenders in him.

I acknowledge that like all parents, and especially as a three-job, single mom, I made mistakes. We all do, because we are human. I used to feel as though I’d somehow failed my older son. My therapist has reassured me that there is really nothing more I could have done. In my being, I know I’ve done the best I could for both of my boys, and I have loved them with every micron of my heart and mind and every fiber of my soul.

Even if I had an undo button, where would I even start?

A Day in the Life: Then and Now

As I stood on the front stoop watching my elder son leave to return to grad school this afternoon, I couldn’t help but remember the very first time my two very little boys got in the car and drove off with their father on that Saturday morning—the first visit a few weeks after our divorce nearly 30 years ago.

Nothing could fill the cavern in my heart that first empty, silent weekend. All of my hopes and dreams, the life I had envisioned for us, had long since disintegrated in the decay of our marriage, but I had my boys, and that was all that mattered. But they were gone for the weekend, and the reality of our situation washed over me in waves. I had no regrets about the divorce, nor have I ever harbored such thoughts. The knowledge that their father only grudgingly consented to visitation weighed heavily upon on my mind.

What would become of us, my little boys and me? How would we ever survive? I had no regular job, no health insurance, and for several long months, no child support. I had no family anywhere in the region and very few real friends on whom I could count. I knew one thing, though. Failure was not an option. I would do whatever it took to provide for my little family—I did freelance design work, I made and sold quilts, I cleaned other people’s toilets and whatever other work I could find until I could secure a full-time job.

After that first weekend, their father didn’t come around again for a while. It wasn’t long before the exhaustion of working so many hours, running after two small, very “busy” children, and keeping up a home overwhelmed my immune system, and I became ill with a virus that grew into pneumonia and laid me out for five months. Somehow, we survived.

Nearly two years after my divorce, I landed a job that provided health insurance and good benefits, and allowed me the flexibility to stay home with the boys when necessary. Years later when my younger son went head first over his bicycle and broke both wrists (casts from knuckles over the elbows), I took off for seven weeks to care for him and home school him. I was fortunate that I could take off that time.

They years passed so quickly. I know I made mistakes along the way, but I always did my best to be a good and loving mom. Fortunately, none of my mistakes was serious enough to have lasting consequences! Today, watching him drive off in his own vehicle, about the same age as his father when we divorced, I felt a pang, as I always do upon leaving my kids, but I was also filled with a great sense of pride in the young men who both of my boys grew up to be.

As a mom, I suppose that pang, no longer a pang of sorrow at seeing them drive off for the weekend, but one of deep love and appreciation for them, will always remain. At least, I hope it does. The old cavern in my heart overflows with joy for them.

A Day in the Life: Inspiration beyond Inspiring

As I looked through the photos of this incredible installation, I could feel my spirit soaring. As well as a beautiful piece of sculpted art, this is an engineering wonder. I can only imagine how amazing it is in person. I’m talking about this piece, Ventricle, featured in today’s Creative Boom.

Ventricle is a two-part installation that was commissioned by the Southbank Centre in London, and built by New York-based agency, SOFTlab, for the Festival of Love. All images ©Softlab.

Rather than go on about it, myself, as I’m pretty much overwhelmed, here are a few more pics and the URL where you can read all about it and see even more. Note the changing colors at different times of day. All photos are copyright ©Softlab,

See all the rest at Creative Boom. As always, please feel free to share the inspiration!

A Day in the Life: Cold Calls and Eye Floaters

The other day was a busy research and telephone day. Researching specialist contact lens fitters for a patient in Louisville, KY, I found several optometrists’ websites that looked promising. I read as much about each as I could, and then, I took down numbers and called each of the three, knowing full well that I’d be talking not with the docs, but with their assistants.

I introduce myself and explain the purpose of my call. “I’m calling on behalf of Vision Surgery Rehab Network (VSRN), a non-profit organization that facilitates rehab options and provides information for post-corneal refractive surgery (RS) patients with complications.”

“How can we help you?” I explain that I’m currently researching expert lens fitters in the area for a patient who has reached out to us for help. Twenty years after having RK surgery, he is now hyperopic (far-sighted) in each eye to varying degrees, and experiencing muscle strain and headaches. This could generally indicate an imbalance of some sort, but without a thorough exam, it’s impossible to say. Would their practice be interested in working with this patient?

They each take my information and promise to give the docs a message to return my call. About a third of those to whom I reach out either email  or call back, but usually, they ignore my inquiry, as it’s quite common not to want to take on another doctor’s disaster patient. To my surprise, all three called me back, all of them interested in doing whatever they could to help this patient and any others. I listen for what have become the magic words: “we enjoy the challenge,” because we are a challenge, we patients with problems, and we take a lot of chair time with a relatively small financial return.

After answering their questions about VSRN, I ask them about their experience working with post-RS patients, whether RK, LASIK, PRK or otherwise. Mostly what I need to know is that they recognize the particular issues, have successfully seen and treated them often enough to be expert specialty lens fitters (a prosthetic contact lens is generally the only [non-invasive] “fix” that doesn’t cause further problems), and whether they are willing to go in and clean up a mess created by someone else. All three docs passed the vetting process with flying colors, and I was able to provide the patient with several options for care.

At the same time, a patient from the west coast called asking for help finding someone to fit her for specialty lenses. Because she is willing and able to travel anywhere as a flight attendant, I gave her several options for excellent fitters, emailed the doc she chose, and closed that case for the time being. And while this is going on, I have a very young, very unhappy Greek patient with floaters after LASIK. His resources are limited by his geography.

Floaters are common enough in the general public, but I also experienced a giant increase in them after I got toasted in 2001. Unfortunately, there are no safe, reliable treatments for zapping them or preventing them at this time, and the young man is very unhappy about it. He is frustrated that there is so little research devoted to his problem. I tried to explain to him that, at least in the US, research dollars are limited and are generally awarded to those seeking cures for life-threatening diseases, like cancer. In his immaturity, he compares the two and finds them equally troublesome, likely because he has, by his own admission, never watched a loved one suffer and die from cancer. He “knows a guy with cancer, but he’s doing better than I am.” I doubt that, but I didn’t respond. He wants me to donate to his cause and post it to our bulletin board. The facts of life: People are not jumping up and down waiting to get in line to donate to non-profits treating eye issues from elective surgery (although VSRN is desperately in need of operating funds, so anyone who’d like to donate to Vision Surgery Rehab Network is more than welcome to send me a message for information on what we do and how to donate, as we have a teeny-weeny, half-a-shoestring budget, and will soon be out of money…).

I am in no way minimizing any patient’s issues, but we have to accept reality. Yes, floaters are extremely distracting when you have the Rand McNally World Atlas of them in your eyes all the time, but they are not the end of the world, and there are a thousand things far worse. The image below is a representation I created after my LASIK to approximate the quality of my post-surgery vision when looking out a window on a sunny day.

Looking out the window. Floaters, glare, ghosting, and loss of contrast after LASIK. Blur is the result of under-correction (they missed the mark.

Ugly, isn’t it? The blur is the result both of under-correction that left residual refractive error, and  irregular corneal surfaces responsible for a long list of other aberrations, including the loss of night vision and dim light vision. I’ve learned to live with it.

 VSRN tries to assist any patients who seek help, and are willing to do something to help themselves. It’s a twisted, rough path, but we try to navigate it with them. If you have had complications from RK, LASIK, PRK or other corneal refractive surgery, and you would like to see if we can help, please message me and we will do our best to seek out the appropriate resources. Visit our website and bulletin board for more information:
http://www.visionsurgeryrehab.org
https://visionsurgeryrehab.evecommunity.com

Disclaimer: VSRN does not dispense medical advice. We exist only to facilitate rehab options for patients with post-RS complications. Our executive director is a clinician, and any information or medical opinions provided are offered only as a basis for assessing and finding rehab options.