Living it up in the air

As July 29 rolls near, memories and thoughts nibble at me. Just three years ago on the evening of July 29, the world as I knew it died and a new one began. On that date, a brain aneurysm ruptured. The events that unfolded were shocking and scary to my friends and family. Of course, I wasn’t conscious enough to feel scared. The flashes of memories I have are those of drifting in peace. Once the peaceful fog cleared into moments of clarity, my pragmatic nature kicked in. With death at the door, what could I do? I chose to do what my dad trained me to do: Put faith in God, believe in people who work on my behalf, enjoy all possible moments even if they are brief and tiny, observe and learn new things so that each day offers an accomplishment, and, hard as it is, don’t worry because worry doesn’t change the past, present or future.

Much to everyone’s surprise, I’m still walking on this amazing Earth. The first two anniversaries passed without much ado. But as this third anniversary comes, I am ready to meet it with an exclamation point. Why now? The past three years have felt like I’ve been putting together a 2,000 piece puzzle. And now that puzzle is complete.

Frankly, it was the hardest puzzle I’ve ever pieced. The first corner and edge pieces seemed to take forever to do. Medications (and tweeking off of them) made me sleepy and emotional. My brain frequently continued to kick back to 33 rpm in an iPod world. Driving was not possible at first, then it was a tenuous, tentative undertaking. Could I chat with someone while cooking dinner? No. Could I write automatically without stumbling over spelling? No. Looking back to that period of time I can see now that I was afraid to plan ahead because l had learned that life can change on a dime.

As last year’s anniversary arrived, I could truly appreciate the progress I’d made. By then, my stellar spelling was back, I could more often than not cook a meal and talk or watch the news at the same time, I could comfortably drive for half an hour or 45 minutes. Basically I could do most everything I used to do as long as I was finished and resting by mid-afternoon. Even so, I refused to plan anything too far in advance. Commit to any long-term volunteer positions? No way.

I’m ashamed to say that annoyance and exasperation colored many of my moments. People treated me as if I’m the same as I was before my brain blew up. It’s easy to understand. I look the same, talk the same, problem-solve and reason the same. I read lots of books, have a wide variety of interests, and continue to garden, stitch, knit, clean, cook, do laundry and be as helpful as I can to others. It’s amazing when you think about it.

But the truth is that I’m NOT the same. When the barometer plummets or spikes, my brain fuzzes. When too many people are talking at once or changing topics on me, I silently struggle to keep up. Crowds of people are exhausting. Driving lengthy distances (especially on the interstate) is still not on my agenda. I’m at my best energy and thinking in the morning, but I live with late-sleepers whose peak energies start about the time my brain is winding down.

At some point this past year, I concluded that my so-called limitations are no big deal, but I’m not going to pretend they don’t exist, either. I began to ask friends and family to understand, adjust and accommodate. Some people embraced my new view. Some were perplexed. Still others continue to forget and need reminders. A rare few seem like they think I’m making up excuses. I’m not. I simply want to enjoy living, not gut through it.

Maybe I’m a slow learner, but the recovery piece of survival turned out to be surprisingly hard. For three years, my feelings bounced around like a balloon in the breeze. There’s been fear (will I be here tomorrow?), sadness (I can’t do that anymore), loneliness (people don’t understand), happiness (I can still do this!), joy (isn’t life amazing?) and peace (I may be different, but I’m absolutely okay).

But I can honestly say I’ve recovered. I am no longer “up in the air” blowing whatever direction the winds of the day take me. And it’s an achievement that I’m ready to recognize. Therefore, at the exact moment when my brain blew up three years ago, my steadfast college friend and I will be swaying over the river and trees around Stillwater.

Neither one of us has been in a hot air balloon, so we are excited. As for our husbands? It turns out they are both too nervous to go with us. So if you check the east metro horizon on July 29 at 7 p.m. and you see a hot air balloon, I hope you smile. While our spouses pace and worry with their feet firmly planted on the ground, Sue and I will be experiencing a benediction in the sky. And I promise that if you wave to us, we’ll definitely wave back!

A Glimmer of Hope

Last week the mail carrier delivered my newsletter from the National Brain Aneurysm Foundation, which is based near Boston, MA. As I flipped through it, my attention was caught by two stories that outlined current research into brain aneurysms.

I already knew about the work being done at Yale. Research there involves genetics and the identification of risk for brain aneurysms through DNA. I was one of the thousands of brain aneurysm survivors asked to participate and last spring the lab at St. Johns Hospital cheerfully drew my blood and sent it off to the Ivy League school.

According to the article, five spots on the DNA strand have been identified as genetic variants that could carry a significant risk for brain aneurysms. As research continues into this extremely complex area, I see a glimmer of hope that someday we will have genetic screening that can help identify people who are at risk for developing brain aneurysms BEFORE their brain blows up like mine did. It would be a true blessing to have better screening.

The other article that caught my eye in the newsletter detailed ongoing research funded by the National Brain Aneurysm Foundation to save brains (and therefore lives) once an aneurysm ruptures.  This research indicates that neurological problems that follow treatment for ruptured aneurysms may be caused by tiny blood clots and vessel spasms. The hope is to develop medications that target those teeny clots so that a ruptured brain aneurysm does not doom us with a lifetime of impairment or lifestyle adjustments.

In my opinion, both types of research are important and encouraging. Every year about 30,000 people in this country rupture brain aneurysms. Only 18,000 of us survive to face another day.  Wouldn’t it be nice to cut down on the ruptures and improve the survival?

In an era when cancer dominates the medical research community and its funding dollars, it is gratifying to know that at least some researchers think brain aneurysms deserve time and attention, too.

Not just any haircut

Anniversaries are upon us, and many have nothing to do with weddings.

A couple weeks ago, I saw a young man I know. Call him Mike. He is handsomely cute, funny, and remarkably insightful.  This 20-something “kid” (my words) is also blessed with an envious amount of shiny, wavy hair which is the color of a rich cup of French Roast coffee.

I hadn’t seen Mike for a few months. So when I did, I noticed that his hair was much longer than usual. Polite person that I try to be, I didn’t mention it. Lots of young men wear their hair long these days, don’t they? I figured he was just experimenting with a new look.

He’s not. Mike is planning to have a friend shave his gorgeous hair completely off.

“You are?” I asked. “Why? Your hair is perfect!”

Then he explained.  One day last June, Mike got home from work, flipped on his TV and flopped on his couch to watch Jeopardy like he always did. A few minutes after sitting down, he felt a crack inside his head. As the TV show progressed, Mike felt “not right” but also thought the feeling would pass. Instead, he passed out. When he came to, a different TV show was on. Still not knowing what was happening to him, Mike groped around for his cell phone, found it and called 911.

Mike saved his own life with that 911 call because he had ruptured a brain aneurysm. Obviously, he survived his surgery and long stint in ICU. Today, he works, drives, and enjoys spending time with his family and friends. He even has a significant relationship with a young woman now!

Mike admits that he just wants to get on with his life. But he also admits that each day brings reminders of what happened to him. He loves driving but is much more exhausted once he gets to his destination. He needs to seek a few minutes of alone time during parties with friends. He sometimes feels frustrated with jobs that require an excess of multi-tasking. Most annoyingly, he can’t always laugh off occasional forgetfulness, even though every human being forgets things once in awhile. Face it, when friends or family forget something, they shrug and say, “I’m showing my age, I guess.” When a brain aneurysm survivor forgets something, we pause and think, “Is it happening again? Am I okay?”

We look the same as before our aneurysms ruptured. We have the same interests, activities and personalities.  But we are different, too.  And it’s all too easy to forget that.

Mike is approaching his one-year anniversary with mixed feelings. In the spirit of youth, however, he decided to grow out his hair and shave it all off on his anniversary date.

“I haven’t seen my scar in months,” he said. “My friends haven’t, either. So I thought it would be good way to celebrate living and, at the same time, remind myself and everyone else what happened.”

I laughed.  What a great idea! It makes a lot of sense. My own anniversary is approaching (three years). Is it time for me to shave my head? Maybe not yet. I think I’ll go to a movie instead.

The True Joys of Jello

Lately, I’ve been thinking a lot about Jello. A couple friends have had stomach issues, so I brought them some. Another friend just had surgery and her hospital food tray came with a dish of it—just like many of my own food trays did when I was at the National Brain Aneurysm Center.

Frankly, Jello is one of those food memories that most of us laugh about today. It’s also a food that divides the generations. If you are my age, you grew up with a regular serving of Jello in school and at home. If you are younger, you didn’t.  To understand the importance and common sense of Jello you have to step back in time and place.

I grew up on a farm/ranch in the great Midwest. Fresh fruit and vegetables came from my mother’s massive garden and a small orchard my grandmother had started during the Great Depression. For us, fresh fruit was only available from mid June through mid September.  After that, we ate home-canned fruits and vegetables.  In today’s food-crazed world where “locally grown” and “organic” are elevated to a high standing mystique, it sounds wonderful. But it wasn’t.

Envision my mother and me hoeing manure directly from the feedlot into the garden, or picking hundreds of fat, squishy caterpillars from tomatoes. Maybe you’d rather shoo away the mice and snakes while you weed and pick?

Each year, I got to sit for hours in the cherry trees banging on pie pans with a wooden spoon to keep the birds from eating our food.  When I was a little older, my dad taught me how to shoot so I could spend the night in the sweet corn field defending our food from ‘posom and ‘coons. 

We had one grocery store in town. By today’s standards it was very, very small. George, the owner, stocked canned fruits and vegetables.  Interstates were not laid in our part of the country back then, so George depended on the Rock Island Railroad to bring fresh fruits and vegetables to town. In the winter, George’s 15-feet of “fresh” food consisted of potatoes, onions, funky-looking iceberg lettuce, carrots and, if we were lucky, bananas.  Huge boxes of Colorado peaches came in August. Florida and California oranges and grapefruit arrived in December.

When Jello hit the market in the post World War II era, it was WONDERFUL. Home cooks could finally have the taste of cool, fresh fruit at each and every meal. It is a simple truth: Canned fruits put into tangy Jello taste better, fresher and more exotic than plain ol’ canned fruit. It still does.

During my month in the hospital, I enjoyed each and every dish of Jello that was brought to me. Maybe that’s because it reminded me of my childhood. Maybe it was because the massive amount of electrolytes being pumped into my body to save my life left me with taste buds that craved cool fruity sweets. Maybe it was because chewing was somewhat challenging after the second vasospasm (stroke). Whatever the reason, I enjoyed my Jello as a kid. I enjoyed it in the hospital. And I still enjoy it today.

One Step in Front of the Other

A few weeks ago, I talked to a delightful young woman who lives in North Dakota. She is a mother, a writer, and a long-distance runner. Like so many of us, she is also a brain aneurysm survivor. 

Her name is Kathleen Wriggley and she is running the Fargo Marathon tomorrow. Bless her heart. Like me, she is also blogging about her journey which you can follow here. 

When Kathleen found out in early summer that she would need a couple aneurysms clipped, she says her life took a screeching U- turn. She needed to prepare her two school aged children for her upcoming surgery and make sure her preschooler would be okay. She had to get her work organized and ready for her absence. “I cried every day that summer,” she said. “I could have had the surgery then, but I wanted my children to be in school so they would still have a routine. I thought it would be better for them.”

Her husband was consumed with worry and was in a turmoil of his own. Would Kathleen be okay? Or would she come out of surgery different?

Last September, when her kids were back in school, she and her husband traveled to downtown St. Paul where the great doctors at the National Brain Aneurysm Center did their surgery. She, like me, is grateful for Drs. Madison and Nussbaum, as well as every single nurse and technician who cared for her.

She is so grateful, in fact, that she is using each step of the Fargo Marathon to raise awareness and funds for the National Brain Aneurysm Center. Why? “Running this marathon is symbolic for me,” she says. “It tells me–and everyone else–that my life is back and I’m okay.”

I could not run a marathon, even if I was younger and perfectly healthy. My admiration for Kathleen is enormous. In fact, I’m in awe. I am praying for her and willing her strength and success each and every step of her journey. She is truly amazing.

More my ability is the Stroke Walk in Plymouth. May is Stroke Awareness Month and a bunch of us will be strolling through French Park enjoying ourselves, our friends, our families and, of course, our renewed lives. The Minnesota Stroke Association is sponsoring that event. Those of us who suffered vasospasm strokes when our brain aneurysms ruptured may have a slightly different twist on strokes. But a stroke is still a stroke and recovery is not easy.  I’m sure it will be fun to stroll through a beautiful park on a beautiful day and enjoy the new adventures that each day brings.

Whether it’s a marathon or a walk in the park, we all must put one step in front of the other. Only then will our journey be satisfying.

The Test

Yesterday, as I stared at the design wall in my sewing room, I experienced “a blast from the past.”

About a week before I was discharged from the ICU at the National Brain Aneurysm Center, a quiet doctor with warm and twinkling eyes entered my room. He was there, he said, to assess my brain function and determine what (if any) damage had been done from my ruptured aneurysm and the vasospasm/stroke.  Surely he would have laughed if he had watched me stare at the quilt I am piecing. Then he would have flunked me in the spacial/pattern recognition portion of his tests.

My quilt pattern is called “Irish Ribbon.” When I chose the pattern, it seemed like a very doable project. Wrong. The individual blocks pieced together just fine once I got the hang of it. The snag, however, has come in arranging the blocks into a quilt to get the flowing ribbon effect. The last step before sewing the blocks together is to attach a two-inch border so that the ribbons end in a gentle flourish.

The goal is great, but the execution is brutal. By noon, I realized with a sinking heart that somewhere in stitching together 300-plus rectangles and triangles, I’d made a mistake.  Was it a huge mistake? A little one?  Where in the heck was it?

I flashed back to one specific section of the doctor’s brain test—the section that reminded me of quilting blocks.  The test squares were patterned with squares and triangles. Each “question” was comprised of several squares that were the same and one that was a little off. The goal was to pick out the one that was different. After feeling tortured through a couple of the brain test sections, that one was easy. 

Obviously, the doctor’s test didn’t include any Irish Ribbons.

Eventually, I found my quilting mistake. I had stitched a tiny triangle right-facing instead of left-facing. Unfortunately, that little sucker was in the middle of a block. To fix it, I would need to rip out all of the block’s seams and pieces. If you sew, you know seam-ripping is dreadfully tedious and discouraging.

Instead of grabbing my well-used seam-ripper and getting to work, I spent a considerable amount of time convincing  myself that the quilt would be just fine with one tiny mistake. “Nobody will notice.” “A mistake underlines its hand-made status.” “No quilt is perfect.” “It’ll be FUN to challenge people to find the error.” “The time spent ripping apart the block isn’t worth the result.” Ya-da-ya-da-ya-da.

Brain aneurysm bleeds and surgery apparently didn’t hamper my ability to think up creative excuses and rationalizations. Why wasn’t that included in the brain function test?  

Of course, by the end of the day, I had ripped apart the block and fixed the mistake. I rationalized it this way: Many of life’s mistakes cannot be fixed–only recognized, forgiven and overcome. A sewing mistake is completely in my control to correct. I don’t have to WANT to– I just have to do it.

It’s a good thing that attitude also wasn’t part of the brain function test. Had I been tested yesterday, those results would have required some rehab.

Moving slowly in an Ipod world

When people ask what it’s like to recover from a ruptured brain aneurysm and vasospasm strokes, I always say, “It’s like traveling at 33 mph in an IPod and IPhone world.”

People with names like Linda, Bill, Brenda, Sue, and John know exactly what I mean.  As for those named Ashley and Ryan? Not so much.

In today’s world it’s easy to feel out-of-step. Maybe all those brain surgeries affected my ability to conquer modern communications technology.  Are my fingers clumsier?  Are my brain neurons too disconnected and slow to interpret tiny images quickly and accurately? Did I lose the capacity to learn new things?

With our handheld  phone we can shoot pictures and video, write messages for immediate delivery, talk, play games, navigate through town and get 24/7 news alerts and information.  It’s amazing, exciting, addictive and, for me, perplexing.

I’m perplexed because I honestly don’t see the point.  Yes, our handheld technology gives us fingertip communication and information accessibility. But it doesn’t supply us with peace, quiet, or spirituality. Nor can it replace face-to-face smiles or soothe our hurts and sorrows. It can’t increase our concentration or improve our attitude.

To be honest, I didn’t mind traveling 33 rpm in an IPod world. Brain trauma and its recovery taught me to appreciate life and its simplest achievements. It taught me to balance choices and value simplicity.  It taught me to slow down and enjoy little pleasures.

So I’ve made a choice. I don’t and won’t Twitter, Tweet or Text. Traveling at 33 rpm is just fine by me.

The slightest change in pressure

The merry month of March has come in like a lamb here in Minnesota. Winter has been long and snow-filled. Longer, warmer days are a welcome change. But I know that the lamb will leave and the lion will roar. I also know that those of us with brain aneurysms will feel that feline’s bite.

The fact is, changes in weather can hurt. My aneurysms have been surgically fixed, but barometric pressure fluctuations seem to change the intracranial pressure in my brain.

Have you seen those fluid-filled, decorative barometers? As the outside air pressure changes, the fluid in the tube rises or falls. I figure that’s what happens inside our heads, too.

A couple months ago, as I was reading the St. Paul Pioneer Press, I noticed a Q & A medical column.  The reader’s question: “A cold front came in and I had head/face pressure. What is that all about?”

The doctor’s answer was that weather changes can trigger migraine headaches as well as pain in arthritic joints. He speculated that a difference in the body’s internal pressure and the outside barometric pressure was the reason.

So I asked members of my support group at the National Brain Aneurysm Center whether they noticed weather-related problems. EVERYONE did. Responses ranged from “feeling fuzzy” to feeling tired and fatigued. Those of us who had undergone open craniotomies noticed something even more bizarre. As the weather changes, the skull bones that have knit back together after surgery actually dent in or out.

My husband is a prove-it-to-me kind of guy. Whenever I comment that the weather must be changing, he says, “Let’s see your dent.” I brush the hair away from my forehead, he studies a spot just beneath the hairline and affirms my prediction. The fact is, there are days when that spot is completely flat and looks no different than any other place on my forehead. Then there are days when it is so dented it looks like someone shot me with a gun.

Spring is here at last. Some days will be filled with lambs. Others will be tormented by lions.  If you want to know what the day will bring, forget about forecasts from high-priced television meteorologists. Instead, ask a walking, talking barometer. Ask a brain aneurysm survivor.

Maintaining the engine

February is Heart Month and the American Heart Association does a great job getting the word out about heart disease. It’s important information and we are lucky to live in the time and place we do because doctors have gotten really good at fixing hearts.

Most of the time.

Long before my brain blew up, I was diagnosed with heart disease. It was a no brainer for physicians because I have a strong genetic link to heart disease on my dad’s side.  So are aneurysms, but those are harder to diagnose than heart disease.

While in my 20s, I’d have unexplainable bouts of high blood pressure that would go away. In my early 30s, doctors wondered why my heart beat too fast. It, too, would go away, come back, go away. By my late 30s, my diastolic readings were steadily, gradually elevating. In my early 40s and at the doctor’s office for a sinus infection, my doctor took my blood pressure several times, listened to my heart a lot and said, “I’ve had enough of this. It’s time to get you on blood pressure medication.”  

Dutifully, I took blood pressure medication daily. The problem? It didn’t work as well as my doctor hoped.  Basically, the lower reading was a stubborn sucker. With medication, my blood pressure went from 125/105 to 118/95.

Then my brain blew up.

Doctors and nurses at the National Brain Aneurysm Center saved my life. They clipped and coiled, clipped and coiled, clipped and coiled until, eventually, all of the ticking time bombs were gone. In the midst of those surgeries, a magical thing happened: My blood pressure problems disappeared.

Today I can boast readings that make everyone my age envious: 107/65, 110/72, 105/73…

The brain is the engine that drives the body. It tells the lungs to breathe, the eyes to blink and the heart to beat. The lesson: Take care of your heart, but don’t forget about your head. 

Thinking about `what if…’

Happy New Year!

December blew by in a rush. Cookie baking. Some pre-holiday gatherings.  Cookie baking.  Holiday decorating. Cookie baking. Cleaning and furniture rearrangement.  Cookie baking. Snow shoveling. Vile flu and a headache that lasted eight days. Cookie baking. Pre-surgery preparation.  Holiday celebration. Eldest and youngest sons swooping in to “help.”  Finally the much-anticipated highlight: my husband’s hip replacement surgery.

Frankly, I’m exhausted. I’m also amazed at the amount of  “stuff” hip and joint replacement patients accumulate prior to surgery. My husband’s pre-surgery preparation list included elastic shoelaces; grabbers of varying lengths; canes; toilet risers and shower grab bars; shower seats; incredibly long shoe horns; and those odd-looking gizmos to pull on socks.  Oh, let’s not forget the walker.  It has a seat, a basket, hand brakes and night reflectors.  Just add headlights and a John Deere motor and he’s street legal.

Among the things he had to do prior to surgery: Make out a Health Care Directive. Like many of us, he had stubbornly avoided thinking about “what if….”.  But it’s so important to have one—and I learned that the hard way.

When my brain blew up, the Health Care Directive forms were in my office buried with other paperwork in my “To Do” file.  While in ICU those first few days, I floated in and out of sleep. Although much of it remains a blur, I was very worried about unfinished business.  When one of the hospital’s social workers came, I remember a sense of relief.  She brought the forms and in a soothing clear voice, explained each option, checked my selections, and rearranged my bed tray so I could sign it.  

We all should make out a Health Care Directive—and we should do it long before we need it. But human nature is mysterious and, too often, we procrastinate “should” until it becomes “must.”

As for my husband’s surgery?  It’s been much more of a blessing than a curse. His surgeon is unbelievably talented and skilled.  St. Joe’s orthopedic nurses were fabulous. The home health nurse and physical therapist are grand.  My husband’s hip doesn’t hurt at all. In fact, he’s getting around better than before his surgery. Only one question remains: What are we going to do with his tricked-out walker?