Learn. Live. Hope

Lessons Learned in the ICU

As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013.  For more info on our club, please go tohttp://www.westconntoastmasters.org.

“The greatest wealth is health.”  ~Virgil, Ancient Roman Poet

Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.

As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU.  I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis.  While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.

The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude.  When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to.  Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body.  One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.”  Aunt Caryn started laughing.  I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!”  While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!”  At this time we both started laughing uncontrollably!  While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were.  Instead of dwelling on all of  the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.

The second lesson I learned while being sick in the ICU, is that life really is about the “little things.”  I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you.  When I was in the ICU, there were many things I couldn’t do on my own.  I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all.  When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months.  This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving.  I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie.  I was restricted from common, day-to-day things that we don’t even think twice about; we just do them.  My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them.  I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.

The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life.  Being sick is a burden.  There’s no way to say it besides it “sucks”.  It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to.  While I was sick in the ICU, I learned that some people just couldn’t be bothered.  Those same people who couldn’t be bothered, are sometimes the people you needed the most.  My sickness brought out the best in some people, and it also brought out the absolute worst in others.  I’m only going to talk about the best though.  One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut.  One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country.  I learned family is something you should never take for granted.  When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family.  Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!

After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude.  I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced.  I will leave you with this:

“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult

Learn. Live. Hope

18 Months Down, So Many More To Go…..

“Don’t give up before the miracle happens.” ~Fannie Flag 
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It is hard to believe that eighteen months ago I was bed-ridden in the ICU on life-support.  Tubes in-and-out of my throat, surgery after surgery, no one knowing whether each day if it would be my last.  Living in uncertainty unwilling to even produce a thought for yourself while your body instinctively telling you that your only job for the day is “to survive,” leaves a lasting impression in your head.  What I endured and have overcome in all 71 total days in the hospital last year was not only a game-changer, it has forever impacted my life.  For the better.

Since my transplant, multiple brain surgeries, extensive physical, occupational, speech, psycho, and now visual therapy–I have since made great strides from the depths of ground zero, essentially.  In all honesty, I feel the healthiest I have ever been in my entire life.  My strength and endurance are coming around quite nicely as well.  I have been working on myself, and making the best “me” that I could possibly be.  I have a feeling, almost a knowingness, that I am on the right track and great things are just around the corner for me.

As I mentioned before, recovering from three very major surgeries in a five-week time span, takes quite an enormous toll; not on just my body, but my emotions as well.  I can proudly say I have been seeing a psychotherapist for the past four months.  My therapist, Susan, has helped me with dealing with the emotional aspect of having a transplant as well as dealing with some of the permanent life changes I have had to make. I have come a long way in the past four months.  I used to cry for hours upon hours, locked away in my room.  I had no idea why I was crying or how to stop.  I was told it was okay to cry.  It was okay to let it out.  I had so much emotional grief built up from what happened to me, that it all just eventually started coming out in the form of uncontrollable tears down my face.  Still, to this moment, tears well up in my eyes just writing and reflecting on my experience.

The tears are not always exactly sadness though.  They are all sorts of emotions wrapped into one colossal meltdown.  Happiness. Frustration.  Triumph.  Anger.  Anticipation. Discouragement.  Wonder. Hope. Appreciation.  Dissatisfaction.  Confusion. Gratitude.  While I am still working to overcome all of these emotions, I am in a much better place than I was several months ago.

Since my transplant, I have often felt guilty.  Guilty because I now have life, while my donor doesn’t.  My donor is another human being, someone’s daughter, son, brother, sister, cousin, and they are dead.  The only reason I am alive is because they are not. I know they are not dead because of me, I am alive because of them. It has been very tough on me, and I imagine this feeling of guilt is going to stay with me forever.  I will never be able to repay my donor for their ultimate act of gratitude, but what I can do is give back in the form of being involved in organizations that raise awareness about organ donation, liver disease, and/or other topics that I desire to be a part of.

Since my transplant I have involved myself in several groups, as well as volunteer for several organizations.  Donate Life Connecticut and the American Liver Foundation are just two of them, but one of the first groups I became involved with was COPE (Community Outreach for Purpose and Empowerment).  COPE, formed by my aunt, aims to empower girls and young women.  Members of COPE learn and improve their goal-setting techniques, engage in active plan to achieve their goals, and learn to overcome obstacles and interference that may be holding them back.  Overall, the members of COPE learn how to live their life with a purpose.  I created the website for COPE and update it regularly. I have really enjoyed doing this, because it allows me to get my creative juices flowing and keeps my mind sharp.

Another way I keep sharp, is through attending and participating in Toastmasters.  Toastmasters is a well-recognized, international organization, that is focused on enhancing people’s public speaking, communication, and leadership skills.  My aunt Caryn had a feeling I would be speaking publicly about my story one day and

In May (2013) I won the Kalley Award for "Best Speech" for my Icebreaker speech at Toastmasters
In May (2013) I won the Kalley Award for “Best Speech” for my Icebreaker speech at Toastmasters

encouraged me to join.  If you aren’t a member yet, I strongly encourage you to find one in your area and get involved.  I went from being completely incapable of speaking in front of a small crowd, to confidently giving a speech in front of hundreds in a short few months.  I began attending the meetings last winter and have since given two prepared speeches.  I won “best speech” for both of my speeches, and even won the club’s “Kalley Award” (most impact on the meeting) after my “Icebreaker” speech!  My aunt was certainly right when she told me Toastmasters was going to be helpful in my future. I never anticipated how quickly though.

This year I was selected as one of the American Liver Foundation‘s LIVEr Life Champions.  As the LIVEr Champion, I served as “the face” for the Liver Life Walk this past September in Stamford, CT.  Leading up the event, I filmed a :30 sec PSA for the ALF, was featured on The Liver Life Walk’s regional brochure.  Not only that, but I had to be one of the faces at the walk, and give a speech about my survival in front of several hundred people.

I continue to utilize my communication skills while serving as a volunteer ambassador for Donate Life Connecticut.  In the past year I have been a part of the Danbury AAA donor program, attended several Donate Life events.  I have also shared my survival story to the medical and ER staff at Danbury hospital, raising awareness about organ/tissue donation (through the New England Organ Bank and Donate Life CT).  Just last week I was in Greenville, SC and had the privilege to shared my story with the Furman Women’s golf team.  That was amazing experience, because I could see that I really touched those girl’s lives.  The more speeches I do, the more confident and easier it is to speak in front of people.  Hopefully it only gets better from here on out.

Trying to get my game back!
Trying to get my golf game back!

I have also occupied my time by returning to the game I hate to love the most, golf.  Last January, my grandfather, Emilio, took me to the driving range to see if I could hit; I couldn’t even make one complete swing. I had so much pain in my elbows from being so weak and suffered from severe joint pain, a side-effect of several of my medications.  I continued trying to workout and get stronger.  By April I was hitting at the driving range with elbow braces trying to minimize the pain.  About a month after that I played 18 holes.  Shortly after, I was able to walk 18 holes with a pull-cart.  I spent a lot of my time practicing and even played in a couple of captain’s choice tournaments in the area.  In one of the tournaments, I won $100 for lowest gross score (-11) with my team.  At another tournament I also won $100 for longest drive (from the red tees, don’t get too excited!).  By the end of the summer I was able to shoot in the the low 80s from the white tees.  As of now, I have only broken 80 once since my illnesses; a 73 at Candlewood CC (fairly easy par 71 course).  This summer you better believe I am going to get my scoring average down in the 70s!

Now I am currently in St. Augustine, Florida visiting my mom and stepfather.  Just a few days ago I was in Greenville, SC for a wonderful nine days catching up with my bestest of friends.  I will be spending the next three weeks here in Florida soaking up the sun (while of course wearing my SPF 50), playing lots of golf, attending my 10-year high school reunion (Nease High School, Ponte Vedra Beach, FL), and doing other fun activities with my mom and step dad.  Once this trip is over it is back to the grind per-say of my routine of visual therapy, other various doctor appointments, follow-ups, blood work, and daily exercise.

My transplant doctor at Yale informed me that by my next infectious disease appointment in February, there was a good possibility I would be taken off Voriconazole, my anti-fungal medication, Voriconazole. Fingers crossed, I would love to be off this medication; not only because it would be 12 less pills/day to take, but also because the medication is $4,400 a month (no that is not a typo, it is $4,440/month).  Even though the price is covered by my insurance, my insurance is such a pain my ass.  Each and every month I have to battle with them to get me my medication on-time, simply because my insurance does not want pay for it.  Oh well, it could be worse right?  Eighteen months ago I was on life-support. Battling insurance inconveniences and other minor hassles are insignificant in comparison to battling to be healthy, battling to breath, battling to to be alive.

In the last eighteen months I have learned so much about myself, about life, about death, and about the inbetween.  I will never be able to fully express, in detail, the emotion or meaning of what I have been through.  I would never wish it upon my worst enemy to experience what I experienced last spring, but at the same time, I prefer it happen to me rather than someone else.  As crazy as it sounds, I would do it again if it meant someone else wouldn’t have to go through it because I know I can handle it.  Knowing you knocked “death” on it’s ass after looking it square in the eyes, is one of the most satisfying feelings in the world.  I was meant to survive.  Before you survive you must endure struggle.  That is what gives it meaning.  So many people go along just cruising through life.  When they coast, they forget about what is really important. I was one of those people.

I have a purpose and I am just now finding out what my purpose is.  It begins by being able to share my personal medical journey with you so you can learn from me.  What do I hope you learn?  I hope you learn that giving back is one of the greatest things you can do.  I hope you learn that a positive attitude is the most powerful and infectious attributes that you can have.  Lastly, I hope you learn to believe in yourself, and have faith that everything is going to fall in place one day.

ING Hartford Marathon with my sister!  Desiree ran her first full marathon, and I ran the 5K (well, partially.  I ran partially on the half marathon by accident, oops).
ING Hartford Marathon with my sister! Desiree ran her first full marathon, and I ran the 5K (well, partially. I ran partially on the half marathon by accident, oops).hope you learn to believe in yourself and everything you do.  If you believe it, you can achieve it, no matter what it is you are up against, and that includes your own worst enemy sometimes, yourself!

Eighteen months down, so many more to go….

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.”  ~C, JoyBell C.