Back then, it felt like my life was over. I never would have guessed I had even seven years left, much less seventeen. I fought brain fog, fatigue, a shredded memory, attention deficit, garbled speech. Because my right hand has almost no feeling, I couldn’t type or tie my shoes, or turn a key in the lock. I lived on a tightrope, dependent on high doses of blood thinner to prevent another stroke but with the constant threat of bleeding.

I grieved not just the loss of capability, but the loss of myself. After a year, I could no longer remember who I’d been before.

But slowly, with time and therapy—and much hard work—I regained some of the capabilities I lost. I cultivated some new qualities, chief among them greater patience with myself. With Jack’s help, and the optimism learned from my father, I found the grit to travel off the beaten path. I found the courage to feel lucky, to tamp down the fear that life-threatening accidents lurked around every corner.

Yesterday, when I realized what day it was, I sat at the breakfast table and gave thanks for the marvels of those seventeen years. Walking the floor with four new grandchildren. Standing soaked in the mist and awe of Brazil’s Iguaçu Falls. Basking in the silence of a dervish’s dance. Celebrating twenty-five years and more than fifty countries visited with with Jack. Finding time and voice to write.

I took a breath and a long, calm moment to feel grateful on that, the anniversary of one of the worst days of my life.

Back to reality, I cleaned off the breakfast table. Jack had cooked, so it was my turn to do dishes. I carried the condiments to the kitchen counter next to the refrigerator. Reaching into the refrigerator with an almost-full bottle of salsa, I looked away for just a moment, forgetting to use my eyes to see what my hand cannot feel. That’s when the bottle slithered from my grasp and exploded on the tile kitchen floor.

The sudden thunk, the splat, the flying tomato gore, chunks and shards of glass sailing all the way into the dining room.

Micro pieces of glass as fine as sand were everywhere, even stuck to the bottom of my shoes. There followed the conundrum of “how to clean up glass while on blood thinners.” The answer, of course: very slowly and carefully—with lots of paper towels and help from Jack and his powerful shop vac.

With the mess finally cleaned up, I headed to my office to work. My cell phone rang, a doctor’s office. I noticed the time: 2:10 pm.

A woman’s voice: “I had you down for an appointment at two o’clock.”

Me: “Oh, I think there’s a mistake. I am sure I made that appointment for Wednesday.”

Her: “Yes. Today is Wednesday.”

I looked up, for a moment as lost in brain fog as I’ve ever been.

Even after seventeen years, some things can’t be fixed.

All I can do is chose to live in gratitude for what remains. And I do.

Joan Miró’s The Farm. Courtesy National Gallery of Art , Washington © Succession Miró/ADAGP, Paris and DACS, London 2011

Visiting Hemingway’s Havana house, La Finca Vigia, last year was like a time-warp ride in his ’55 Chrysler back into his life in Cuba—to the home he loved filled with his books, hunting trophies, his art and his demons. Seeing his favorite painting—Joan Miró’s The Farm—propped in the dining room was magical, even though the version on view at the Finca is a reproduction.

The painting was woven into the fabric of Hemingway’s life, from his early days scrimping by in Paris, to the glory days in Key West and Havana, to the sad years of decline when he lost his home in the chaos of two Cuban revolutions, as well as his ability to write.

This month, The Farm goes on view in a major Miró retrospective in Paris at the Grand Palais museum complex.

Reproduction of “The Farm” in dining room of La Finca Vigia

The exhibition runs from October 3, 2018, through February 4, 2019. If you’re planning to be in Paris during that time, don’t miss it. Details here https://www.grandpalais.fr/en/event/miro

In Paris in the 1920s, Hemingway and Miró were friends, both working feverishly, trying to make it as creative artists.

“My stories would all come back with rejection slips and Miró’s unsold canvases were piled up all over his studio,” Hemingway once said.

One of those canvases was The Farm, “a large and wonderfully strange picture” of Miró’s family farm near Barcelona. Miró worked on the painting for nine months. While art dealers scoffed at what would later be called Miro’s seminal work, Hemingway was smitten.

He “became so crazy about it that he wanted to buy it even though he didn’t have a cent in his pocket,” Miró once wrote.

With a wife and baby to support, there was no way Hemingway could afford the 3,500-franc price—about $175 at the time. But he persevered: he scrimped and cajoled, took odd jobs, and borrowed from friends to buy the painting in 1925. No one can say what The Farm might be worth today— but guesstimates hit the stratosphere above $10 million, perhaps as much as $30 million or more.

Hemingway with his cat, Boise, wife Mary, and Joan Miró in the dining at the Finca. From Popperfoto/Getty Images

There’s no wonder that Hemingway loved the painting.

“It has in it all that you feel about Spain when you are there and all that you feel when you are away and cannot go there. No one else has been able to paint these two very opposing things,” Hemingway wrote in an art magazine nine years after he bought the painting.

Writer John Updike (a sometime art critic) once wrote “the painting is possessed by an ecstasy of simple naming, a seemingly innocent directness that is yet challenging and ominous.”

One could say the same about Hemingway’s best prose.

The race to spirit The Farm out of Cuba after the Communist Revolution is worthy of a movie thriller. That clandestine operation, and the effort to restore the painting from the depredations of decades in the humid tropics—are detailed in a Vanity Fair story published yesterday, “The Old Man and ‘The Farm’: The Long, Tumultuous Saga of Ernest Hemingway’s Prized Miró Masterpiece.”

.

In 1987, Hemingway’s widow, Mary, donated the painting to the National Gallery of Art in Washington, DC, still its permanent home.

Anne Sigmon at Hemingway’s Cuba home, La Finca Vigia, 2017

*****

Anne Sigmon’s story about traveling on the Hemingway trail in Cuba— “Hemingway, Cuba, and Me”— won top prize in the 2018 Book Passage Travel Writers Conference conference. It is published this month on the GeoEx blog Wanderlust: Literary journeys for the discerning traveler edited by Don George.

‘Height’ was written as ‘right.’ ‘Core’ was written as ‘bore’—rhyming mistakes that didn’t come from a missed finger on the keyboard. I never make typos like that, I thought.

Excerpt from Scrambling Back:One Woman’s Quest to Return to te Wild After Stroke and Autoimmune Disease

This oddity—I didn’t think of it at a “symptom”—seemed too vague to take to a doctor. It was probably just menopause coming on, I decided. Besides, I was busy and otherwise felt fine. Later, after my stroke, my speech therapist explained that my “oddity” was indeed a neurological symptom that my brain might not be getting enough oxygen.

Unusual forgetfulness and the kind of rhyming mistakes I was making are “stroke-like” symptoms. They can—as in my case—be a sign of a stroke to come. They can also signal a brain that is beginning to develop memory and cognition problems that could lead to dementia, according to research published in the journal Neurology.

 The study found that people who had stroke symptoms were more likely to develop memory and thinking problems: Twice as likely among Caucasians and three likes as likely among African Americans.

“Our study highlights the importance of discussing stroke-like symptoms with your family doctor, even if they don’t last long. These symptoms can be a warning sign that a person is at increased risk of stroke or problems with thinking or memory,” said study author Dr. Brendan J. Kelley of the University of Cincinnati.

Find more information about the study here.

When I think back to those quirky symptoms I had in the year before my stroke, I realize:  If I’d reported these to my doctor—my gynecologist, the only doctor I had back then—if she had connected the dots … She might have ordered tests that would have pinpointed three alarming risks for stroke: migraines, a genetic risk for stroke called Factor V Leiden, and, most serious, an autoimmune clotting disorder that was turning my blood to sludge. Surely she would have ordered me to stop taking estrogen in the form of birth control pills. She might have prescribed an aspirin a day to reduce my stroke risk. My stroke might have been prevented.

If. If. If. That’s a place I don’t like to go.

But it’s not too late for you. Learn about stroke risks and how they might apply to you. And if you experience symptoms, even quirky ones, see your doctor ASAP.

Read more about the risk factors for stroke here.

So far, this has been a three-bears summer where I live in Lafayette, swinging from a too-cold foggy chill to a too-hot swelter with the sun beating down and the temp pushing past 100 degrees. I’m missing those “just-right” days we usually count on at this time of year.

The chill is easy to manage with a fleece vest, warm socks and an extra cover over my Raynaud’s-cold feet at night. The “too-hot” days are tougher for me and many other autoimmune patients.

Some days, I need a rest from the effort of taking a shower–definitely not the way I want to live.

Here are my personal ten commandments for managing the heat.

1. Keep the house cool. Sounds simple, but this often leads to bullheaded wrangling in my house – my husband and I both being Taurus types – but I fight to win on this point because it makes such a difference in the way I feel.
2. Try to stay out of the sun. I do the best I can, but I refuse to be a shut-in.
3. Avoid the afternoon heat. When possible, I do my running around in the cooler morning and evening hours.
4. Dress to keep cool and protected from the sun. When I need to be outside on hot days I turn to wardrobe relief: my favorite wide brimmed hat, and comfy cool sandals. My JunglePants paper-light and breathable pants and long-or-three-quarter sleeve shirts keep the sun off while allowing me to stay cool.
5. Wear sunscreen every day.  I double dose when it’s really sunny ­– basic sunscreen in my daily moisturizer plus a high SPF when I go outside.
6. Drink loads of water. I carry plain water or electrolyte-spiked water with me everywhere. There’s a gallon jug in the refrigerator and insulated bottles everywhere else: in the car, in my home office, in the tote bag I carry to classes and meetings, by my bed at night. I play a game to see how much water I can drink.
7. Autoimmunity is an inflammation-fuel illness. Avoiding sugar, transfats, alcohol and other foods that trigger inflammation is something we should be doing every day. But it’s especially important in the summer or during autoimmune “flares.” Try this link to a list of 10 best and worst foods for inflammation. No surprises here: Yes on fish and nuts and leafy greens; no on sugary, fatty carbs. I’ve spent half my life trying to love eating like a rabbit. Definitely a work in progress­–slow progress at that.
8. Get plenty of rest. That’s the hardest commandment for me ‘cause I’m a natural night-owl who’s always hated naps. I’d much rather be doing. But when it’s hot, or when I’m flaring (often one and the same), I try to go to bed earlier, sleep later, and rest my aching joints when they need it.
9. Ice. When I’m really flared with aching back and puffed-up fingers I often try an ice pack, always wrapped in a cloth or towel but never for more than 20 minutes at a time.
10. Take a cool swim or shower. I don’t have a pool and I’ve never enjoyed swimming, but for those who do, a swim seems like a perfect cool down. For non-swimmers like me, a cool shower’s not a bad substitute.

Related post:  Autoimmune Disease: When Flares Get You Down 

How do you beat the summer heat?

When I was diagnosed with antiphospholipid syndrome in 2002, I  felt like I’d fallen into a bad sci-fi movie. I’d never heard of APS; even most of my doctors had never heard of it. I had a hard time finding information about it. There was no “national society of …” The best source of information I found was NORD—the National Organization for Rare Disorders.

Although APS is still listed in the NORD system, it turns out that APS really isn’t rare. At the time, 16 years ago, it wasn’t very well known. But research and increased awareness have greatly expanded our understanding of APS.

The reason you should care is simple:

Antiphospholipid Syndrome—APS—is dangerous and much more common than first thought.

It’s now estimated that one to five percent of the general population has APS.

That’s about two to six million women in the US, comparable to the number of women living with cancer.

There is now an organization, The APS Foundation of America—founded in 2005—that promotes antiphospholipid syndrome education, public awareness, research, and patient services.

These statistics from the APS Foundation of America demonstrate the seriousness of APS as a health problem—particularly, though not exclusively—for women:

• APS is the No. 1 cause of strokes in young people.
• One third of strokes occurring in people under 50 are due to APS.  Mine was one of those.
• Estrogen in the form of birth control pills and hormone replacement–perfectly safe for most women–can be deadly for women with APS.
• 20% of blood clots in large veins (deep vein thrombosis, including pulmonary embolism) are caused by APS.
• 10-25% of women with recurrent miscarriages have APS.  If properly diagnosed and treated, many of them will be able to deliver healthy babies. That was not the case in years past. Undiagnosed APS is  the reason I was not able to have children.
• APS is a major women’s health issue: 75-90% of those affected by APS are women.

The hallmark of APS is a tendency for blood clots to form when they shouldn’t. Patients who’ve had repeated blood clotting episodes should ask their doctors about testing for APS.

Learn more about antiphospholipid syndrome on my APS resources page.

But if you or someone you love has APS, don’t despair. APS is treatable, primarily with drugs like aspirin, Coumadin (generic warfarin), and other blood thinners.

Related Posts:

• My Introduction to Antiphospholipid Syndrome
• What the *^## is Antiphospholipid Syndrome–APS?
• Why You Need to Know about Antiphospholipid Syndrome—APS
• Autoimmune Disease: When Flares Get You Down
• Video Explains Antiphospholipid Syndrome

Coming up:

• APS symptoms
• How APS is diagnosed
• How APS is treated
• Resources for APS patients
• Blood thinning: it’s more complicated than it looks
• Living with Coumadin
• Why I rejected the new blood thinners like Xaralto.

It’s happening again. I’m at the edge of my mind, teetering toward the void of missing synapses, staring into the white fog of absence. Of absent memory, yes. But it’s more than that: it’s an absence of self. I feel my self slipping, like a hiker on a mud-slimed path. I balance on the far edge, lean back, beg my mind not to fall into the void—again.

In reality, I’m standing at the refrigerator door, looking at the object in my hand, an everyday object, something I want to cook. But I don’t know what it is. I think, trying to summon the information. Think, think, think. Nothing.

This is what stroke does. Still, after 16 years and a near-miraculous recovery.

After my stroke, I couldn’t remember my husband’s name or how to dial 911. I couldn’t control a fork to feed myself, couldn’t comb my hair, tie my shoes, or button a shirt. I couldn’t recite the alphabet or say what I wanted.

I was one of the lucky ones. Today I can do all of these. But I still can’t work in my profession of marketing and communications. (I don’t think fast enough, write fast enough, react fast enough, work fast enough.) I can’t calculate a tip in a restaurant or balance a checkbook. I often stutter and stumble when I talk, forget tasks, appointments, names, faces. Standing at the coffeepot, I can’t remember that my husband, thirty seconds ago, asked for just half a cup. And now, forgetting his coffee entirely, I carry the object in my hand into the den and ask him, “what is this?”

He looks up, startled, then answers: “asparagus.”

Yes, of course.

Still, some sixty or more percent of stroke survivors would trade places with me in a second.

Like me, they are unable to return to work. But unlike me, most of them can’t drive, type, articulate, live almost normally in the world. Many still—months and years after a stroke—can’t walk without assistance, can’t feed or dress themselves.

Yes, I am lucky and I know it. But still ….  My stroke was caused by an autoimmune clotting disorder called antiphospholipid syndrome (APS). This means that my own risk of a repeat stroke is very high, around 60-70%, experts say.  Each time I totter on the abyss I wonder, like feeling the beginning of a temblor in earthquake country: is this it? Is this another big one?

Don’t let stroke happen to you or someone you love.

Eighty percent of strokes can be prevented. May is Stroke Awareness Month. What better time to learn the risk factors for stroke and share them with someone you love?

Learn more about stroke:

• Learning the Facts about Stroke Can Save Your Life
• The Horrendous Cost of Stroke
• The Five Warning Signs of Stroke
• Special Stroke Symptoms Typical to Women
• What Should You Do If You Think Someone May Be Having a Stroke? (Hint: Act FAST!)

Some days you just feel like life’s going to the dogs

I prefer to live with autoimmune disease and the aftereffects of stroke by staying positive.

• I try to remember that I’m lucky to have recovered as much as I have. “Focus on what you have, not what you’ve lost,” I tell myself.
• A certain amount of pain and fatigue are just part of my life now. I try to push through the minor stuff and keep living my life.
• The company of friends and family is like at tonic to me. I try to keep dates, even when I’m tired or feeling less than well. Friends are usually happy to make some adjustments—a closer restaurant so I don’t have to drive so far, a ride if I don’t feel like driving, a movie instead of a hike.
• To me, purpose is one of the best medicines: making a call, sending a card, an email or small gift to someone who needs it; doing a favor; writing a story or sharing information that might help someone—these help take my mind off my own limitations.
• I try to rest when I’m overtired, and reign in my tendency to schedule too much, sleep too little, and turn to chocolate (sugar—BAD!) when I’m stressed.

But, as anyone with autoimmune knows, sometimes none of that is enough.

When my autoimmune disease—APS (antiphospholipid syndrome)—has flared …

I’ve been through weeks of crackly, aching joints, of pinching-pounding-stabbing along my spine … weeks of wanting to crawl back into bed after the simple effort of a morning shower … Itching red rashes and blue-veined legs—just a typical autoimmune “flare” courtesy of my particular disease, APS.

And, when life slings machetes at my friends and family at the same time—and there’s been far too much of that this year)—well …

 I  feel like it’s raining toads … like life’s going to the dogs.  I want to turn off the phone, hide under the covers, and scream. 

Sometimes I  do a little of that. Or vent on Facebook or in my blog.  But ultimately, I  get out of bed, attack the overdue work pile, admit that I can’t do it all, make apologies for late commitments, cancel some things that just can’t be done, and see to helping my loved ones who are taking it on the chin.

It’s usually this last part—trying to be there for someone I love—that’s the most healing step of all.

The “normal” IV, called an  intravenous catheter, delivers medicines into a vein near the skin surface.  It can be safety left in place for 3-4 days.

If the treatment must go on for longer—for example, chemotherapy or long-term antibiotic or cancer treatment, hospital sometimes use a PICC line (peripherally inserted central catheter), photo above. With proper care, the PICC line can be left in place for months.

According to Vineet Chopra, University of Michigan assistant professor of Internal Medicine and a leader of a recent study, PICCs are much easier to use than normal IVs. Because PICCs can stay inserted for longer than other IVs, Chopra said patients can go home with them, resulting in less time in the hospital and added convenience for the patient. Furthermore, PICCs can reach all the way to the heart, whereas normal IVs end in the arm.

But PICC lines pose a risk for blood clots that can be especially severe for patients who have already had clotting problems.

In a recent study by the University of Michigan, almost 30 percent of patients with PICC lines developed blood clots. Patients who had any kind of surgery during their hospital stay, or had had any kind of deep clot in their medical history, were more likely to get a DVT (deep vein thrombosis) associated with their PICC.

The results, says Chopra, suggest that doctors should use PICCs only when they really need them – and that they should tread carefully when considering PICCs for certain patients, monitor for clots, ensure patients continue taking aspirin and statins that they were already on, and take the PICC out before any operation.

Patients should feel empowered to ask what kind of IV device they’re getting, and what risks it carries, before one is placed, he says. Once a patient has a PICC, it’s important that they know what symptoms might indicate they have a clot – and to ask when the PICC can come out.

I’m glad to know this. As an APS patient with a history of blood clot in the brain, I want to reduce my risk of clots any way I can. That means avoiding PICC lines unless they’re absolutely mandatory. And if  I’m ever forced into a PICC line, I’ll know to make sure my medical team is extra vigilant in clot prevention.

For more information about the University of Michigan Study, look here: http://bit.ly/1FMyo6I

Papua New Guinea: The Mt. Hagan Show

Sometimes it seems like blood clots rule my life. It was a clot that caused my stroke in 2002, precipitated by the autoimmune clotting disorder antiphospholipid syndrome (APS).

APS has a nasty tendency to “re-thrombose” — that’s the medical jargon I read, soon after my stroke, telling me  I was highly likely to have another.

My first defense is taking the blood thinner Coumadin (warfarin) — for life, all my doctors have insisted. I take their advice.

I also look for other ways to discourage blood clots. Here are twelve tips worth knowing.

12 tips for preventing blood clots:

1. Maintain an active lifestyle and exercise regularly — daily, if possible.
2. Maintain a healthy weight
3. Eat a healthy diet.
4. Don’t smoke
5. Get your blood pressure checked regularly; take steps to lower it, if necessary.
6. Report any family or personal history of blood-clotting problems to your doctor. If, like me,  you’re at high risk, you may need to consider medications to prevent clots.
7. Discuss alternatives to birth control pills or hormone-replacement therapy with your doctor.
8. If you are on an airplane for more than four hours, either walk or do leg stretches in your seat. Drink lots of water while flying and avoid alcohol.
9. If you are at special risk for clots, consider compression socks. I use them whenever I fly long distances. I found—to my great surprise—that I actually like them. I call them “happy feet.”
10. During pregnancy, ask your doctor what you can do to help prevent clots.
11. With your doctor, develop clot-prevention strategies for any surgical procedure that will last more than an hour.
12. Cancer patients are especially prone to blood clots. If you have cancer, talk to your doctor about making blood clot prevention an integral part of your treatment plan.

For further information:

Seven Simple Lifestyle Steps May Decrease Risk of Blood Clots

On the alert for deep-vein blood clots 

Cancer and Blood Clots: a complicated connection

I call them the “hidden” risk factors for stroke. They are very real, especially for women, but not as talked about in the stroke prevention literature. These “hidden” risks caused me to have a stroke at only forty-eight ears old. They include:

Migraines: Recent research shows that women who suffer from migraines with aura (visual disturbances such as flashing dots or blind spots) can be up to ten times more likely to suffer a stroke, depending on other risk factors.

Birth Control Pills: Women who take even a low-estrogen birth control pill are twice as likely to have a stroke than those who don’t.

Hormone Replacement Therapy: Women who take hormone replacement therapy may have a slightly increased stroke risk.

Autoimmune disorders such as diabetes or lupus can increase the risk of stroke.

Clotting disorders:  Women who’ve had more than one miscarriage may be at higher risk for blood clots, which can increase their chance of a stroke. Other signs of a possible clotting disorder can include previous history of clots in the legs (deep vein thrombosis); and livedo retiularis, a mottled purplish discoloration of the skin, especially when it is cold.

And, risk factors are cumulative,” Dr. Kittner says.  “Reducing even one risk can greatly lower your chances of having a stroke.”

Prevent stroke by knowing your risks and reducing them as much as you can.