Lily U Burns

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. 

Running up the Hill

It was spring in DC - full on SPRING. It has yet to travel up the coast to Boston. I spent a few days in DC with the American Heart Association as part of Lobby Day - time to speak to members of Congress about the importance of funding research in the areas of heart disease and stroke research. For example, did you know that for all of the National Institutes of Health's budget only 4% goes towards heart research, and 1 % towards stroke, yet heart disease and stroke are the Nation's number 1 and 3 killer... interesting little fact.

So there we were - more than 300 people from 46 states across the country to discuss heart health and stroke awareness. It was an impressive sight to be sure: the color red could be seen from afar. I wonder whether they listened. The Hill is full of lobbiests. Every day, every hour, every minute people traipse up to Capitol Hill and pitch their stories. At times it seems that it takes more energy than it is worth. It is a steep climb up that hill - both literally and then it is figurative for those of us dealing with heart disease and stroke.

And then, in an instant it changes. The stories come out:

-A young girl born with a heart defect who subsequently suffered a stroke

-A woman who has suffered several strokes due to a rare brain disorder

-A woman who has had three open - heart surgeries for valve replacement, and knows that the valve will not outlive her, so she will need another (she is only in her 40s)

These are not stories of older white men collapsing on a golf course. These are the people who deal with heart disease and stroke every single day. I hope that our trip made the incline on the hill a little less steep for those of us who have to climb it everyday...

Well, Then, where do I begin?

I started this blog years ago, after a stroke.  Yes, I know.  You might be tired of that word.  I myself have started to grow tired of it, and I suppose 4 years later that is a good thing.  I actually never thought that I would shy away from the word.  For so long after the stroke, it became my central identifier.  And yet now it is merely a small part of who I am and it by no means defines me.

Since 2006, I have taken an active stance in speaking out about stroke and heart disease awareness.  In the beginning, I did it for myself.  Then, as time went on, I did it for people I knew who had suffered a stroke.  Some went on with their lives, and some people's lives were taken by stroke and heart disease. Now I am truly passionate about raising awareness, and it has become noticed.  Recently, I was contacted by Harvard Pilgrim Healthcare to participate in a program they started call "Well, Then."  This is a community of individuals who share ideas about being and living well.  Topics range from healthy eating to living with diabetes to (yes, you guessed it!) living with heart disease.

When Harvard Pilgrim approached me, I was intrigued.  They asked me to write a series of pieces and post some videos over a two month period and explained that I would be compensated for my work. Another venue to raise my voice, to share my story, and to quite possibly make a difference.  I thought about it.  I thought about it a while. I knew that I had a lot going on and with the upcoming holidays, some travel plans, and a pending knee operation, I wondered whether I could commit to the task. However, I kept thinking back to my own experiences with stroke and heart disease.  I did not know all of the warning signs of stroke and heart disease prior to my own experiences.  I did not know that heart disease was the nation's number one killer and stroke number three.

If I did know the signs and the symptoms, would it have been any different? Maybe, maybe not.  But if I am able to reach just one more person and make a difference, then in the end it is all worth it after all.

 

In the Moment

Very soon, there will not be enough space on forms for me to fill out the number of surgeries that I have had.  I am not yet 40.

I am not complaining, these kinds of things happen, and for the most part there is little that I could have done in my past to have prevented any of these surgeries.  

My tonsils?  Well, they just got too big and by the age of 6 the doctor wanted them out.

At 19 a disc in my back degenerated so badly that my right leg was starting to go numb and give out.  I am not sure that I could have changed that.

Three knee surgeries happened due to a stupid skiing accident on a day when I did not even want to go skiing.  I suppose I could have changed this - I could have not gone skiing that day.  I could have taken a different trail down the mountain (I'm sorry, HILL, as we were skiing in Massachusetts...), and there are dozens of other little decisions that could have been made to stop the incident from occurring, but none the less, it happened.  And life goes on.

A hole in my heart... born with it.  Congenital heart defects happen, and I do not know of any ways to stop them.  Many people have asked me, "Well, how did you find out about it?"  A simple one word response:  "I had a stroke."  And I could not have stopped the stroke, because it had to do with the heart defect.

And now I am pretty fired up, because I get to have another knee surgery.

You almost have to laugh at all of this.  Almost.  Because if you didn't you would sit down in a corner and cry because the entire situation is pretty pathetic.  However, I am not the kind of person to sit in the corner and cry.  I am not the kind of person to sit in the corner and complain.  I would rather be in the middle of it all, changing things for the better, and making a conscious decision to live my life in the moment, and know that for that moment, it is going to be alright. 

 

Frequent Patient Card

I should be used to it by now... the waiting, the anticipation, the news, the no news, the anxiety, and perhaps most prominent of all, the frustration.  Yes, after all of my numerous visits, countless tests, blood draws, scans, xrays, MRIs, I still hold out hope that the next time it will be different.  But more often than not, I am disappointed.

I am a repeat customer at my hospital.  If any one of my doctors spent time reading over my chart, they would see that I am an excellent client - good for them, bad for me.  Three knee surgeries, stroke, open-heart surgery, pneumonia, all within in the past 6 years.  Pretty good stuff, right, and for someone who has not even reached the age of 40.  And lucky me, I managed to do something to my knee again, two days ago.

Not just a little something, but something so painful that I am unable to put weight down on my leg. So painful that it keeps me up at night, and so painful that just looking at stairs causes panic.  You might say, well I am a klutz or I need to take better care of myself.  That is the irony of it all - low blood pressure, no smoking, and a fitness instructor, so stuff like this should just not happen.

But let's get back to the doctors, and my frequent "shopping" card at my hospital.  It takes very little for a doctor to look at my chart and see that when I am calling and asking a question, I am not trying to be difficult, but simply looking for a response.  I do not think that it is too much to ask that I receive a response in 24 hours.  So when I called my orthopedic doctor a while back and left a message that I was in a considerable amount of pain and it would be helpful to have the results, I was less than thrilled when I had not heard anything by the next day.  I called back almost 48 hours later and was told that in order to find out my MRI results I would have to speak to radiology, and my orthopedic doctor would be given another message but that he was really busy (yes, I am aware of this, the first time I met with him I waited in the office for 2 1/2 hours...)  Radiology told me they would not give me the results as my doctor needed to give them to me, and so I was being bounced around like a ping-pong ball.  Oh, as far as my pain goes, they told me to increase the Advil and I could come in for a cortisone shot.  Um, no thanks.  I have had one of those (2 in fact) and they don't work.  Neither, for that matter, does the Advil... And I informed them that I really looked forward to coming in and waiting to be seen.  It just rocks.

I suddenly was reminded of 2006 and the preparation for my heart surgery.  I was not given direct answers, and often the answer that most people agreed upon was a run around response.  So, I consider myself an "expert" in the medical system, and I am continually disappointed.  There should be some kind of points card for frequent visitors (patients) at hospitals.  You know, those of us who unfortunately are more familiar with some aspects of the medical care system than our own doctors are.

I know that my circumstances are by no means unique.  Sadly, my situation (the lack of response, apathy, and wait time) probably happens to most people.  Why is it that when a doctor treats patient with respect that it is cause for celebration?  Or when a patient is seen within 5-10 minutes of the scheduled appointment it is considered "on time"?  Yes, there are many other variables at play here, and I am well aware of these (patients can be late too etc), but as a frequent patient I think that expectations and outcomes should be higher. 

Unwelcome House Guests

You probably do not know me.  In fact to you, I might very well be a stranger.  But I am sure that you have met my close friends:  heart disease and stroke.  You might even know them better than I do, for I have only had the most intimate of relationships with them since 2006.

I met heart disease years ago, but not on a first name basis.  Heart Disease wanted to meet my grandfathers first and become close friends with them before truly stepping through the doors to my own life.  When I was a small child I remember tracing the long scar on my maternal grandfather’s chest with my fingers asking him to tell me the story behind the scar over and over again.  Such a big scar, and such little fingers trying to understand the depth of what lay behind the incision.

In the sixth grade, heart disease decided to visit again.  This time, to my paternal grandfather.  The visit was such a surprise that we did not have time to plan… heart disease just came in, and when it left, it decided to take my grandfather from us.  However, at that point in time, I still had small hands, and there were no scars to trace with my fingers, we only had pain left behind.

Stroke then decided to stop by, and visited my maternal grandfather.  Twice.  The second visit devastated us all – however, it devastated my grandfather the most, as it left him incapacitated and bedridden for 14 years and eventually too sick to keep fighting.

I suppose my family gained popularity and status in certain circles, because both heart disease and stroke decided to visit me in July 2006.  Stroke made a surprise visit on July 21, 2006 and stayed for a while.  I later learned that heart disease (congenital heart defect to be specific) had actually stopped by on November 20, 1972 the day I was born.  However, it did not decide to make itself heard until stroke showed up.  I guess it was an attention thing…

The funny thing with stroke and heart disease is that they are the kinds of guests that never really leave.  They are always around, lurking in a corner, down a dark alley, and just waiting for the window to be left open just the tiniest amount so that they can come back.  Heart disease is the nation’s number 1 uninvited guest – stroke is number 3. 

You might not know me, but I am quite certain that you have met heart disease and/or stroke before.  They sometimes come without letting you know in advance of their travel plans.  They are not the kinds of friends or guests that you want to have in your home or in your family or friends’ homes.  They do not say please or thank you, and when they leave, it is not quietly and often a path of destruction is a reminder of their visit.

You do not have to think twice about my story or feel pity or remorse– I have started to move beyond these visits, and beyond the fear of a potential “next” visit.  I celebrate my life, with a new husband who recognized my signs of stroke. But think about yourself, your friends, and your family.  Understand the importance of limiting the impact of these unwelcome guests.  Support the American Heart and American Stroke Associations. 

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

Home is Where the Heart Is

I am an avid tweeter - you know, Twitter?  I love it, and in fact have 2 separate accounts to match each one of my blogs.  It is not always easy staying on top of all of the info, never mind remembering to be engaged and provide updates and info that seem to be "worthy" of reading.  There is a lot of fantastic information on Twitter - likewise, there is a lot in MISinformation as well.  In my attempt to look for all things heart related, I came across HeartHub for patients, which is part of the American Heart Association (AHA).  The site is great - it is a site for patients and caregivers and it is affiliated with the AHA - who better to back a patient website with all things heart related?  You can check out your risk level for heart disease, your BMI, and review various treatment options.  But as the index page of the site came up and I started to look a bit deeper, that feeling of disappointment that so often follows every time I look at most heart and or/ stroke related material emerged.

There were no young people (that I could see anyway).  When I say young, I mean people who appear to be younger than 40-45 or so.  Speaking from personal experience, I know that strokes can and do happen to anyone no matter what you look like, what your age is, or your ethnicity.  The site reminded me of a brochure I received upon being discharged from the hospital after my stroke.  An elderly couple smiled back at me - they were sitting outside in a chair and had their arms around each other.  The heading on the brochure read "Sex after Stroke" and the couple was probably in their late 70s - early 80s.  How could I (33 at the time) possibly relate to the couple on the brochure?  I did not think that the brochure would provide alternative birth control methods since I could no longer take hormones following my stroke, and somehow, I did not think that the elderly couple would need to worry about such issues. 

The situation is similar with HeartHub .  While the information is fantastic, I would love to see someone (other than a health care professional) who is at least near my own age.

Now, don't get me wrong, there are  campaigns to which I can relate.  As I was on my run yesterday, I ran my an American Stroke Association "Choose to Move" poster.  A young healthy woman - probably in her late 20s - mid 30s - was wearing headphones, had a smile on her face, and looked as if she was dancing.  She could have been me - and I could be her.  This I related to.

In the end I suppose what matters the most is that the information is there-  people see it and remember what kinds of resources they have access to.  My only concern is that if people do not see individuals "like them" on health-related marketing materials, they may ignore the resources and think "This could never happen to me", when it fact it can, and it can hit closer to home then they could possibly imagine.