Lily U Burns

Five Years Old

 

(Image from http://knol.google.com/k/atrial-septal-defect#)

The string, the nylon thread that hold a small piece of my heart together is almost five years old. Anniversaries come and go in people's lives, but when I think back to where I was and what I was doing five years ago, it amazes me how things have changed. 12 December 2006 I lay in a hospital bed, tubes everywhere, pain in my chest that is truly undescrible, and fluid draining slowly from my lungs. And that little piece of string that holds it all together. Today we are living Abu Dhabi, UAE, married, and smiling in the sunshine.

As the UAE celebrates is 40th anniversary, I am going to celebrate my 5th. My 5th anniversary of being healthy and well. My 5th anniversary of understanding the importance of time, family, and friends. You should celebrate too, and I am sure you have something worth celebrating.

Breaking Hearts

It has been sometime since I put fingers to keys and wrote on my "Queen of Hearts" blog. There is really not any good reason. Perhaps it is because lately I have felt "fixed". The 5th anniversary of my stroke crept up on me, and it was not until someone else mentioned it on Twitter that I remembered the day. A little voice in the back of my head kept telling me there was something of critical importance on 21 July, but I kept silencing that voice.

We have also moved, a big move: Boston to Abu Dhabi.  I had the comfort and knowledge that my medical care was sound and secure when we were in Boston. I lived in the middle of some of the world's best hospitals. And now, I am at a total loss when it comes to doctors. What hospital do I go to? What if something else happens to my heart? Will they even understand what kind of heart surgery I had following my stroke? I also pushed those fears to the back of my mind and told myself that nothing would go wrong - we would just make the move and deal with the challenges as they came our way.

I am now in a place where no one knows my story. Unfortunately, my story is not unique, and there are stories out there all over the world that are all to similar to my own. I recently heard of a heart breaking one... Jennifer Perillo's husband died of a sudden heart attack several days ago. Like my stroke, it was a sudden event, no warning. No one should have to experience that kind of loss.

I have never met Jennie, I have never met her family, but she and I have exchanged brief messages over Twitter. Her news shocked and shook me. It stunned me. And haunts me. And perhaps that is why I am typing again on the Queen of Hearts, because of the hearts that break every day and there is so little that can be done.

My husband and I learned something so valuable after that day in July and again after my open heart surgery several months later... Life happens and sometimes, when it does grief comes along. It is unpleasant, it is unfair, and often there is little if any any justification for what comes our way.

Remember to hold your loved ones tight. Tell them how you feel. Appreciate the here and now, and try to let the worries of tomorrow become a little less, as here and now is all we really have. And love as deeply as you can. 

A Pre-Wedding Ode

I learned a lot about the people in my life following my stroke and open heart surgery. You tend to quickly recognize who your true friends are and who are those people who are not so sure if they have the moral fiber to truly be there as you go throw a pretty life-changing experience.  Not to make light of it, but I think that the same is true of weddings.

I have heard  that weddings can bring out the worst in people.  True.  I have witnessed this first hand, but more often than not, it is at other people's wedding.  I am lucky enough to say that for the most part I have not witnessed this behavior, unless you want to include irrational rants and raves from the bride-to-be about scheduling, planning, and those tiny little details that one feels the desire to go over time and time and time again.  So, aside from that I have been - for the most part - lucky.  Lucky to the point that I have realized more and more every day how incredible the people are in my life.  We have an amazing group of friends and family, people with whom we have laughed and cried; people who we have yelled at, and they have yelled right back.  People who are wise enough to tell us when we are being foolish, and people who are innocent enough to think that aside from all of our faults we are super heros.

Between now and the day, we are allowed to behave like fools and feel like we have superhero powers. Because in my heart, we do have those powers.  We can, and will, do anything.

 

It is in the bag...

There are those moments, and they seem to occur at the most inopportune times.  The middle of the night, the middle of a meeting, or when I am teaching a fitness class.  I start to think about the guest list.  Do we have everyone counted?  Did everyone really receive an invitation?  What about the people who never RSVPd?  Did they actually even receive their invitation?  And those gift bags... the ones that we are going to leave in the hotel rooms.  What about those?  They have to be just right, and that is why the UPS truck has been making daily stops at our apartment.  No, not with wedding gifts but with box upon box of items that will go into the bags for the guests.  I probably wrote down the items to be placed in the gift bags at least 15 times, with little (if any) variation each time.  And truth be told, I am sure that I will do it again!

So after a ton of feedback from friends and family I compiled the list for the gift bags and the candy bar...

What, you ask, what do I plan on actually putting into those gift bags???  Well, I want something that I would want in a gift bag.  What would I want to see if I opened up a bag after a flight across the country to a wedding???

I would probably want to have some kind of energy bar in case I did not have time to eat...

 

Since I love to run, I would want to have a map of the Charles River so that I knew how far I was going...

(Image from Marathon Sports)

I would probably want something to munch on after that run...

(Image from gotribe.com)

and would of course need to be hydrated!

(Image from from Nestle Waters) 

And because I would be in town for a wedding, I would need to make sure I was staying awake at all times!

And of course... there are those simple little extras...

But these are just some ideas that have been written down dozens of times on endless pieces of paper.  I still have 3 wks to deepen my relationship with Mr. UPS!   

The Heart of the Matter

I suppose we are not really following what "most" people consider tradition.  You see originally we had an idea of renting a house in Spain and inviting about 20 people and getting married there.  However that idea was quickly dismissed and we are now onto an entirely different adventure.  Not better, not worse, just different.  That being said, we are doing our best to incorporate as many elements as we can from our original idea.  We still have a small concept.  Yes, the guest list has grown from 20 to about 120, and the location is national versus international.  But we hope to still capture the intimacy of the original intent.

All of this aside, I find it fascinating that as intimate as a wedding is, everyone has an opinion about how and what should occur in June (and I mean everyone!).  

I was recently asked by an almost stranger about my wedding plans.  When she found out that I was not going to be married in a church, a slight gasp escaped from her lips.  When she heard that there was no wedding party, she seemed utterly confused.  And at the mention of no sit down dinner or wedding favors she simply said, "Well...that is unique."  Yes, thank you, it is unique and rather fabulous.

Everyone has an opinion, and while some are really better left unsaid (although they make for great stories) there are some that I have taken to heart.  These are the opinions from my dearest friends.  Many of them have told me time and again how important it is to do what we want to do.  To not have the wedding that other people want us to have but to have the wedding that we want to have.  I do not want to look around on that day or think about that day in the weeks, months, or years to come with any regrets, and at the rate that we are going I do not think that will be the case.  At the end of the day it is about celebration, love, and our friends and family. (Oh, and it is kind of about the cake too...)  But most importantly, whether the guest list is 2, 20, or 120, it is about the two of us.

Flying on Fear Part One

 You know, it really did seem like a good idea at the time.  A great idea in fact.  I like adventures– I mean I did spend a few years working at Club Med, and still day dream about being back there doing the Crazy Signs in front of hundreds of guests every single night.  I SCUBA, I really REALLY want to go cage diving in Cape Town with Great White Sharks, and I even drank the tap water on a regular basis when I lived in Mexico.  So when my good friend Steevy asked me if I would take a Trapeze Class at the Boston Trapeze School with her, I jumped at the idea.  It sounded like a great time, a lot of fun, and a way to burn a few extra calories on a Saturday morning.  When I told her that I would do it, she seemed genuinely surprised.  “Seriously, you will really do it?  Are you just humoring me?”  I reassured her that I was not humoring fun of her, that I would in fact do it, and that we would sign up for February 13, 2010.  Done.

The weeks passed, and I told a few people what I would be up to mid- February.  If Carrie Bradshaw flew on the trapeze with the same group in a “Sex and the City” episode, I could do it too…  When I told my nephews, they thought it sounded pretty cool, and remarked that perhaps I could climb a tree as fast as they could follow my lesson.  My mother was less enthusiastic and told me that defying gravity was one of the stupidest things that I could be doing especially following a stroke and open-heart surgery.

Well, stupid or not, we made our reservation, and really there was no turning back.  The location was a bit odd.  The Boston Trapeze School is not located underneath a big top, but instead inside a furniture store - Jordan's Furniture Store.  Now I am not sure if you have ever been to Jordan's Furniture, but it is not your typical furniture store.  This is not Crate and Barrel or Pottery Barn.  No.  This particular place was like Wally World meets Willy Wonka on a few hits of LSD.  That was what Steevy and I walked into on February 13. 

When we walked into the furniture store we were greeted by the blaring sounds of music, the smell of sugar and waffle cones from the ice cream and Jelly Belly stores that were nestled right near the trapeze school, and blinding multi-colored psychedelic lights of a waterfall lightshow that was located behind the giant trapeze net.  I thought that this was a furniture store?  Yeah, and an IMAX movie theater, and a restaurant, and a Jelly Belly store, and a trapeze school. Oh, and it kind of looked like the first scene of the Wizard of Oz when Dorothy landed in Oz on top of the Wicked Witch.  It was that scary too…

After checking in with our waiver forms, lining up, and getting harness belts cinched so tightly around our waists that Steevy almost had a panic attack (she said it reminded her of her wedding dress) we were given a brief overview of what to expect.  One of our instructors (let's call him John) pointed to the platform that towered 4 stories above us and explained where to stand and where to not stand.  He pointed out that when we climbed up the stairs to the top, we were to move towards the edge of the platform, hang our toes over the edge, lean forward, stick our bellies and chest out and stand up straight. Once we had both hands on the bar (and one of the instructors was holding on to our “corset”), we were supposed to jump 6 inches off of the platform at which point another instructor  (we will call her Cindy) would let go of the corset and away we would fly.  As we were flying through the air, at another instructor’s cue (Amy), we were supposed to bring our legs up (and hook them around the bar), take our hands off (and suspend upside down while swinging), then bring our hands back off, kick forwards and backwards and forwards, and dismount with a back flip.  Yes, this was all on the very first try.  Very fitting for day 1 of the 2010 Winter Olympics.  That was it - the whole deal explained in 15 minutes to 10 people.

We were sent over to a row of chairs, and 3 people climbed up to the top at a time.  Each time 1 person came down off of the net, another person would go up.  Since I was 7^th on the list, I had some time to think about what I was about to do, and I had time to watch what everyone else did.

As we sat and waited and watched the others fly, it looked so easy:  a grab of the bar, a bend in the knees, and after a little jump there was take off – the flying commenced.  After flying from one side of the net to the other instructions were given: "Bring the knees up."  "Take hands off." "Put your hands on." "Legs down." "Swing your legs forward, backward, forward, and back flip."   Seemed pretty easy, all the while flying through the air suspended by sheer muscle and will (and the safety harness just in case...)  More people flew and the line kept moving up.  And then came my turn.

Know the signs-just in case part 2

I lay on the gurney alone thinking about whether I had done the right thing - by coming there.  The ct-scan was fine, but the doctors wanted to perform additional tests.  I turned my head around and looked at the monitor, which keep beeping from time to time.  My pulse was around 47 and my blood pressure was 96/57.  Low, but normal for me.  I figured that was good, because if something was truly wrong the numbers would be significantly higher.  I flipped through my iPhone playing one game of sudoku after the next waiting for something to happen until finally the doctor - the short one - came into the room.

Doctor: You wanted to see me?

Me: Yes, I wanted to know when I can go home.

Doctor: Well, we still need to run a few tests, so you are going to stay the night.

Me: Well, I do not really want to stay the night.  Plus, I have my groceries in my car.

Doctor: Well, it would actually be considered a danger if you went home since we still do not know what happened to you. 

Me: Well, can't I just come back tomorrow?  I would really like to go home.

Doctor: I really think that you need to stop worrying about your groceries and focus on your health.

OK, now if she had offered to go and get my groceries that I had purchased at Whole Foods earlier that day and that were presently sitting in my car in the late July sweltering heat, that would have been one thing, but that was not an option.  So I really did not have too many choices in front of me.

Me: Um, ok, so what is the room situation?

Doctor: Well, that is what we are waiting for, ok? (and then she showed me a big smile as if she knew something that I did not know). Oh, and we are going to give you some ativan once you get to your room.

Clearly, they did not want me to talk any more and were convinced the medicine would take care of that. I really have nothing to do but wait, and shortly there after the nurse came in to tell me that my room was ready.  He announced it almost as if I was in a hotel, which of course I was clearly not!

On my way up to my room I texted Kerry, on of our best friends, and she offered to come by and visit and bring a phone charger and a sweatshirt to wear.

I got to the room, and navigated my way off the gurney with my IV in my right arm, and my computer bag over my left shoulder.  I carefully walked into the room and past an elderly woman who looked me over as I walked towards my bed, which was located by the window.  The woman looked at me as if I was intruding and I did not belong.  I felt like telling her I could not have not agreed more, but instead offered her a slight smile and walked to my bed.

An orderly started to take my vitals - and this included my weight.  Seriously?  It was about 8:30pm, I was having a really shitty night, and she seriously wanted my weight?  Unfortunately for me there was no getting out of this one as the bed actually contained a scale.  Like or not this WAS going to happen.  After those unpleasantries, I asked her for some scrub bottoms to put on, and then went to change (I was still in my work pants).  And that was it. When I emerged from the bathroom I just stood there and looked around.  I was alone and in the hospital for no apparent reason.  The bed was as flat as a board - there was only 1 pillow and one of those moisture resistant pads on the bed for unmentionable problems.  The bed was too close to the woman's part of the room - even though the curtain was closed.  I started to move the bed - one inch at a time pushing all of my weight into my legs. There I was - in my hospital fashion wear, with an IV drip, moving around the room.  Lovely.  However, I needed to do something to keep me busy while I just waited, and waited.  I put the bed into a place that gave me some sense of satisfaction.  Then I did some more waited, and while I did I lost it.  The tears started to roll down my cheeks, and I seriously contemplated leaving.  I took the moisture pad that lay on the bed and through it across the room since it represented everything to me that I was not - sick, unhealthy, and not well.  My IV line kept getting tangled and due to its position, I could not comfortably bend my arm.  I called the nurses and asked for my IV to be moved to my hand.  More waiting.

As I lay there with mascara unevenly streaked around my eyes, Kerry walked in, and for the first time in several hours I felt a sense of relief.  Not only did only she bring a charger for my phone and a sweatshirt, but she also had a box of Belgian chocolates, which inevitably put a smile on my face.  She helped find out where my medicine was (by this point I decided I wanted to go ahead and get the ativan right away).  After another call for the IV change and an inquiry for my medicine, the IV nurse came in to relieve the pain in my mid-arm only to instill some pain into my hand.  A mere several minutes later, the nurse came in with my medicine and I quickly took it all anticipating the ativan to take effect.  Kerry sat back and watched, waited, and after about an hour of keeping me company saw that the ativan was taking effect.  She graciously left me to drift into some kind of sleep.

Voice: Lily, Lily, wake up.

Me: Wha...? Is it time for my MRI?

Voice: No, it's me, wake up.

I opened my eyes and Jarrett's face was right in front of mine.  Jarrett - one of our best friends had managed to talk his way past hospital security after midnight and woke me up from my ativan-induced sleep.  At that moment it hit me that Hector and I are two of the luckiest people ever. Between Kerry and Jarrett (and so many other people) we have incredible friends, and having good friends makes all the difference.  For about 40 minutes Jarrett paced the room, ensured that my car would not be towed from emergency parking, suggested that the overhang outside the window be used for overflow beds, and reassured Hector via multiple text messages (since he was away in D.C. for a conference) that I was fine.  Jarrett also witnesssed the moment that the nurse gave me an additional dose of ativan via IV.  Now this was new to me - something I had never had before.  Apparently the doctor had decided this would be a good idea prior to the MRI, which was finally ready around 1:00am. 

As I got up to walk to the MRI, I kept my computer bag by my side.  The ativan had a mind-numbing affect, and little bothered me at this point.  Jarrett followed behind, in line with the gurney, until I got to the MRI.  We said our goodbyes and then the testing began.  The knocking from the magnets were louder than normal, but this was not like the 10 or so other MRIs that I have had.  The ativan started to take its full affect, and as they explained the MRI to me, and I nodded in agreement informing them I had undergone almost a dozen of these tests, my legs started to bother me.  Restless leg syndrome is the only side affect I have following my stroke, but it came on in such full force while I lay there during the test that I could not stay still.  I kept shaking my legs - one after the next in an attempt to dull the aching and restlessness  that took over.  Through the intercom the doctors repeated several times to stop moving.  Impossible.  I could not stop my legs.  I started to hallucinate.  Orange fuzzy-like things were all over my legs and I kept trying to shake them off, on after the next.  I could not even remember where I was and I felt as if I was drifting in and out of consciousness.  Shaking, one leg at a time.  The orange fuzzies would shake off and then jump right back on.

Me: I need more ativan.

Them: You need to stop moving.

Me: I can't.  My legs.  I can't stop them.

Them: You need to stop for 10-20 more minutes.  We are not done.

Me: I can't...

Tears, again, started coming down my face.  I wanted it over.  I wanted to go back to my room.  And before I could go through another series of shaking my legs, it all stopped.  The banging was over, I came out of the machine, and the test was done.  My computer bag was handed back to me, and we started to go back to my room.  I have no recollection of getting into bed that night.

I woke up around 6:30 am (4 1/2 hours of sleep) to another set of vitals and the hustle of hospitals.  I called Hector in tears (I have a lot of them, so no chance of ever running out!) just wanted to leave.  I wanted to go home.  I could not believe that less than 2 months into my new job I was out of work for something so stupid.  As always, he took the time to talk me down from my hysteria, and bring reason into my head.  Several minutes later a nurse came in to tell me it was time for my ECHO.  Great, another test, and this time on my heart.  I contemplated asking for ativan...

The ultrasound wand ran around the outside of my chest and there it was in black and white on the screen - my heart.  The one organ/muscle that caused all my problem in the first place, but the one I would never ever want to do without.  I watched it quiver as it brought blood in and send blood out.  Flaps and valves moved, and I waited in antipation for the "Bubble Test".  This test would confirm whether the hole, that was sewn shut on December 12, 2006, was still closed.  The doctor agitated the saline and injected it into my IV line.  Instantly, the bubble reached one chamber of my heart.  We all watched and held our breathe.  Nothing.  Nothing happened.  No bubbles escaped and went to the other chamber.  It was good, closed, the thread that tied it together (so to speak) had not come unravelled.

And that was that.  Back in my room my mother waited for me with one of those smiles only your mother can give that makes everything seems alright.  Unfortunately, some young neurologists also waited.  I dreaded having to answer more questions, and I glanced at my mother who sat in the chair reading a book.

Doctor: Do you mind telling us what happened?

Me: Actually, I do.  I am tired of telling my story, and I really do not want to go in to it any more.  It should all be written down in the chart.

Doctor: (looking rather taken a back) I understand, but it would be good to hear you go over it.

Me: I really do not want to.  I am fine now.  I want to go home.

Doctor: Well, it seems that you had rather large migraine, and that could be what led to all of this....

I tuned him out.  I was not going to go over my story again.  I knew that it was a teaching hospital, and I was not helping the cause, but I was exhausted, annoyed, and hungry.  I wanted a coffee (which my mother managed to get for me) and I wanted my own bed.  A migraine.  I came all the way in here for a migraine?  That was it?  I was done.  The fear still danced in the back of my mind.  What if...what if it was more than that?  Well, then it was, and it was over now.

The doctors released me shortly before noon, and I walked out of the hospital in a sweatshirt, scrubs, dress shoes, and carried my computer bag over my shoulder.  I looked anything but fabulous.  But I was ok.  Deep breathes, and I drove myself home.

I supposed if it happened again, I would have to do the same thing.  There is no way of knowing whether the outcome would have been different.

Thank you to Hector, Kerry, Jarrett, my mom, Steevy, & John.

Know the Signs - just in case part #1

July 30, 2009

4:00pm - I sat at my desk and with in minutes started to feel weird - this was not like the first time.  My left arm started to go numb and feel weak, I felt nauseous and a gradual headache made reading and focusing on my work almost impossible.  I ignored it at first.  I get headaches - they happen.  I work out all the time, so I am used to aches and pains, but this felt different.  So different in fact that I thought of my neurologist and called my neurologist's office a few minutes before 5:00pm to make my annual check up.  5:15pm I took 2 baby aspirin, again just in case.  My arm got weaker and pain started to radiated in the upper part of my arm.  I pulled out some post-it notes from desk and wrote "I might be having a stroke, only take me to the Beth Israel". I slipped the note back in my desk drawer so that I would not raise alarm for anyone, but that it would be accessible just in case I needed it.  After speaking to Hector, and telling him how I was feeling, he urged me to call my doctor.  5:50pm, I called my doctor's office, and the nurse  - after reading over my medical history - suggested that I go to the emergency room just to be safe - she said that she would call ahead and tell them about my situation.  She asked me several times if I was able to get to the hospital safely, I felt that I was, so off I went.

Driving though Boston can be a challenge at any time of day.  Driving through Boston an hour before a Boston Red Sox game is misery.  I navigated along the Charles River, past Boston University, around one side of Fenway Park and finally got myself to the Longwood Medical area.  Tears started running down my face as I remembered the last time I went this route was when I actually experienced a stroke and rode in an ambulance.  This time was different - I was by myself, and no one really knew where I was going.  I maneuvered through traffic and finally got myself to the emergency room parking lot.  

As I starting to walk in, two women were in front of me on their way into the ER, one of which was in a wheel chair.  I needed to get in front of them, so I started quickening my pace.  Now perhaps this was not very nice of me considering they were significantly older, but at this point I did not care.  I was alone, scared, and needed someone to give me some kind of reassurance.  This was not going to be a moment for pleasantries or manners, and I did not want to wait in line.  When I got into the building their was a triage receptionist taking "orders" and a really tanned couple was giving their problem in extensive detail.  Although there were three other windows for people to go to, there were no nurses behind the windows waiting there.  To my left a receptionist sat reviewing various bits of paper and looking at her nails.  That was my ticket - I was not going to wait in line - regardless of the octogenarian duo in front of me.

I walked to the receptionist on my left and explained my situation all the while trying to keep it together.  She gave me a blank stare not really getting it. I told her again that my doctor's office had recently called over and that three yrs ago I had a stroke.  Several hours ago I started feeling odd, seemingly having stroke-like symptoms.  I wanted to see someone straight away.  She pointed me towards a chair to sit down, and a triage nurse came over to take over to ask me some questions and take my vitals... Blood Pressure:  110/70, pulse: 56. Time: 6:30pm.  Another nurse came over and asked me to follow her back to the ER, she led me into ER room #17 and asked me to undress from the top down -with that she left the room.

I changed into the johhny and pulled my iPod and computer onto the gurney and started to get ready to do some work while I waited, because I knew that there would be a great deal of waiting ahead.  And so it began - the tests.  I knew what to expect, I am all too familiar with neurological testing, and in fact when I was back in my office a few hours earlier, I did some tests on myself - I stood in front of the mirror in the bathroom and smiled to see if the smile was even.  It was.  But the doctors asked me to smile again, and touch my nose, raise my arms up, squeeze their fingers.  The tests went on... and on. There were two neurologists there - both women, one tall one short - and they both wanted to ask their own questions and conduct their own series of test.  While one of the nurses impressed upon them that it was time for my MRI, the shorter of the two neurologists quipped "Well, we better follow you" and they quickened their pace to follow the gurney down the hall - the little one practically ran she was so excited (if I could have read minds, I would bet that she wanted to find something on the ct-scan...).

The scan came back normal much to my relief - they did several scans in fact, with and without contrast.  I was brought back to my "room" and left to wait.  At this point it was around 7:00pm, which mean shift change for the nurses.  The new nurse, a young man, came into the room and took my vitals and again I was asked what happened.  I suppose that reading a chart is out of the question, and each person needs to hear the story on their own.  By this point I was tired, and I felt alone, and I was sure that my story was not sounding exactly the same from one version to the next.

After making several phone calls to tell key people (boyfriend and mother...) where I was, I pressed the call button and the nurse came in.

Me: Um, what is the situation? (I lay there with one legged draped over the metal bars on the side of the gurney)

Nurse: Well, I looked at the computer, and they want you to stay the night.

Me: Well, I do not want to stay the night.

Nurse: Well, we can't make you, it is your body, and you are of sound mind, but that is what the doctors are ordering.

Me: Well, I have my groceries in my car.  Is there a place I can put them?

Nurse: ????

Me: Well, can I go out there and get them?  I am hungry.

Nurse: I do not think that you can eat. 

Me: Well, can you get the doctors?  I really do not want to stay.  This is not in my plan.

Nurse: OK.

(stay tuned for part 2...)

Learning to Life - lessons from a stroke

Last week I was asked to give a speech at a Bank of America Event.  After several written versions, I had the final one in hand, and gave the speech on a cool rainy afternoon.  I thought that it would be perfect for a blog post.  So here it is in it entirety (edited by Grammar Glamour)

I tend to be one of those people where more is more – the more that I have going on, the more productive I tend to be.  When there is a lull in any part of my life, all of the pieces including work, social and family are somehow affected.  I find that I bring more to each aspect when they are all in motion.  Over the course of any given day, I rush from one meeting to the next, or often in my case, one job to the next, juggling my coffee, my gym bag, my purse, and somehow making it to my final destination before feeling like I am going to collapse.  I am sure that many of you can relate to this multi-tasking induced exhaustion.

It is a challenge to go through everyday like this, and there are days when the only things that feel balanced are the two bags hanging off my arms as I jet off to work each morning.  Still, I thrive off of the energy and simply readjust the priorities if I ever feel that I’m truly losing my balance.  This wasn’t always the case and I’m thankful I now have this perspective.  Several years ago, dire circumstances forced me to reconsider my own priorities, and think long and hard about what really matters.

On July 21, 2006 – close to three years ago – I was navigating those balanced two bags back and forth between two jobs.  Former colleagues at the Harvard Business School asked me if I could come over and teach a fitness class during lunch.  Fitness was something that I did in a previous life, and I figured that I could make this happen.  I’d teach the noon class, grab a quick bite with my boyfriend after class, and then hurry back to work.  It would be a long lunch break with the fitness class included, but it was summer and a Friday afternoon. 

On our way to lunch following the class, I started to feel ill.  I stumbled, thought that I said a few words about not feeling well, and grabbed some bushes to stop myself from falling.  In a matter of seconds, I went from laughing with Hector, my boyfriend, and Erika, a long time friend of mine, to being unable to communicate at all or think clearly.  Imagine someone turned a switch in your head that stopped you from speaking.  Gone.  Off.  Finished.  That is what happened to me – and that is how I can best describe what my stroke felt like.  As surreal and confusing as it was, I remember everything form that day. 

Hector asked me his name, my name, what day it was.  Nothing came out of my mouth, as I could not respond.  Instead, I just watched him, trying to figure out what to do with the situation.  He drove me to the hospital and after I was admitted, the doctors administered a series of tests.  Almost an hour from the initial onset of the stroke, I received the news… I had a 1.5 centimeter blood clot in my head.  It stopped blood from flowing to areas of my temporal lobe, which is associated with speech.  After four days in the hospital, a cardiologist found an atrial septal defect (or an ASD), which is a hole between the left and right atria in the heart – which had been there since birth.  He concluded that this was most likely the cause of the stroke.  And several hours later I was sent home with another title to add to my list of roles … a stroke patient.  Several months later, I underwent open-heart surgery to close the hole in my heart that caused the stroke.

I scheduled the surgery during a quiet time at work.  I knew that work would be less demanding in December and I would have more time to focus on getting well following the surgery, instead of worrying about what was occurring in the office.  For four months, I busied myself planning every second of each day.  I focused on my work, my doctors’ appointments, my fitness…everything and anything that I could to avoid coming to terms with the sheer reality of the looming open heart surgery that would take me out of the day-to-day routine that I had become so accustomed to.  In my typical more is more method, I became completely and utterly frenzied during those months.

The frenzy suddenly stopped on December 12, 2006 for the surgery – and then switched to neutral for the two months that followed.  I really had no choice but to slow down my pace.  No, nothing was wrong with my heart as far as stress went, but still, I underwent open-heart surgery, and I needed rest.  I am not sure if you have ever had the luxury of taking 2 months away from your life as you know it… but it forced me to refocus and regroup my priorities.  Two months away from work, away from the daily routine of early morning fitness classes, ignoring e-mail messages at 6:30 in the morning, not thinking about what I was going to cook for dinner or who I needed to make plans with felt incredibly liberating.  While these things are important, I came to realize that life went on without immediately attending to these items that had always seemed so pressing.  In fact, life improved by letting some of these things slide.  The emails could wait until later in the day, or even tomorrow.  If I didn’t have time to plan dinner, it was easy enough to get take out or have a bowl of cereal instead of stressing myself out.  Even work went on without my constant attention, proving that while I took pride in my job, I could still do it well without always putting it first. Putting myself and Hector first freed me up to approach everything else with a calmer, happier attitude.  This realization enabled me to better balance my personal and professional life once I was healthy enough to pick up the pace.  While it didn’t happen overnight, it did happen, but unfortunately, it took a stroke and open-heart surgery for me to come to this realization.

Following the stroke and surgery, many of my friends and colleagues remarked on the change in my attitude and demeanor, and the shift in my priorities – people started to describe me as more direct, more calm, and more at ease with life in general.  Since I had experienced first hand that life was short, I learned to drop the baggage that often gets picked up as you go on living day to day.  Time is short, and each minute is important.  I needed to make the most of each one and capitalize on the time that I had.

Having a stroke at any age is devastating.  Having a stroke at 33 with no risk factors – except for that problematic hole – was mind numbing.  In fact, to this day, I am not sure that I have fully accepted what happened, let alone the severity of what could have happened, on that July day in 2006.  That aside, I have gained perspective on life and learned about prioritizing, and setting realistic attainable goals.

You might not have time to do everything, and you might not have time to do everything well.  What is most important is that YOU become a priority in your own life.  Of course, work is a priority and it is something that gives people a sense of self and worth.  Speaking for myself, I love what I do.  Years ago, I promised myself that the second I am no longer satisfied with my work, I will start to explore other options.  While it might seem terribly cliché, life is short and you really do not know what is going to happen or when it might happen to you.  When I was in the hospital following my stroke, and certainly in the months, weeks, and days leading up to my open heart surgery, I found myself questioning some of the decisions that I had made in my life, wondering if they were the right ones. I happily discovered that I did not have any regrets, and I am fortunate enough to have learned to live in the present and appreciate what I have at such a young age.  So much of living is about the balance of work, family and friends.  I think that we all have those days when work takes up more time than we might like, or perhaps family or friends are taking up all of the time, and we know in the back of our minds that we need to get back to work – but it is all about give and take.  You need to be able to find and make time for yourself, so that the other critical elements in your life will fall into place without any one part, especially your health, seriously suffering.

I am obviously going to advocate for a healthy lifestyle – it is something that I led before the stroke and surgery, and something that is even more of a priority in my life now.  I realized that even as healthy as I was, I could not control certain factors of my life – such as a congenital heart defect.  You can take this same story and relate it to work, finances and / or family.  There are just so many things that are beyond your control, and you truly have no way of knowing what is going to happen 10 minutes from now, 10 hours from now, or 10 days from now, let alone 10 years from now.  But you can ensure that whatever does end up happening, you are prepared – both mentally and physically.

What I mean is that it is important for you to have other outlets in your life that allow you to regroup.  For me, exercise and overall fitness was and is my sanity.  It takes me out of the daily grind and forces me to do something for me.  I do not bring a BlackBerry with me, because I am not exercising at 6 am for anyone but myself – I will take my phone when I go running, but only for safety purposes due to my stroke.

It is truly about balance.  I know that I continue to come back to that term – but now, more than ever, as we’re bombarded by emails on our laptops and Blackberrys, and surrounded by bleak news about the current economic situation and global events, it is entirely too easy to become consumed in the day to day and simply forget about yourself.  It is not worth it.  Trust me.  When I was lying on the gurney being wheeled off to my surgery, I was not thinking about the e-mails that I sent the days before, the change in my job description that I worked for several years to achieve, or even the hesitation I felt as I left the office knowing that I would not be back for two months.  No.  I thought about my parents, Hector, my grandmother, my sister, my nephews, and how lucky I was to have them all with me.  I seriously had planned for the worst-case scenario – which was not waking up.  But, no matter what the outcome, somehow I knew that everything would be all right because I took this extra time before my surgery to be with my family.

At the end of the day, it is not about who can respond to an email the fastest or stay at the office the longest.  In fact, I know many people who work long hours, but are far less productive than those who come in, do their work, leave around 6 pm and go home to be with their friends, their family, or simply their yoga instructor.  Let me tell you, the latter group is definitely the happiest and no doubt the healthiest.

Trust your instincts on this.  Trust yourself, put yourself first, and learn to live YOUR life and live it well.  There’s no room for regrets when you only have one chance to get it right.

   

-Lily Underwood Burns, June 30, 2009 Bank of America LEAD Speech

For Ali

She knew what her friend was going through.  The days, hours, minutes, and even seconds of wondering "Why me?"  Life changes forever when news is received, especially bad news.  Her friend had major surgery just over a week ago.  And as she recovered she received word that she would probably need another major operation.  This was all too much.  Her friend was only 33.  33 and have major surgery that would change everything.  She remembered back to when she had her stroke.  It happened at 33.  The surgery was only a few months later.  She could relate only too well and knew what it meant to wait for news from doctors as if your life depended on it...because it did.

She could not be there for her physically, but emotionally?  Yes, she could in every possible way.  She understood the depth of the pain and frustration.  She hoped, oh she really hoped that her friend would be able to find those tiny little rays of sunshine through all of the grey clouds.  She had a feeling that she might, she might just get there.  No, she would, she would get there because there was simply no other option.