A Lesson in Gratitude

The past few months I have been working to live in gratitude for all that life brings me – there are times I am quite successful in this endeavor and other times, not so much.  It may be because of this effort that I have been thinking a lot about my youngest brother Jeff lately.

Jeff was born just before I turned 1o – and on my oldest brother’s 12th birthday.  When Mom called Phil to tell him Happy Birthday and that he had a new little brother, he responded “Yeah, well what I really wanted was a bike”.  I guess Phil figured the 3 brothers and 2 sisters he already had were plenty.  Mom had a very difficult delivery and nearly didn’t survive it.  When she came home with the baby she was required to be on bedrest.  My grandma came over to help out during the day, and I did all of the evening and night time feedings and care.  Needless to say, he and I formed an especially strong bond.  

Like 2 of my other brothers, Jeff was born with Hemophilia – a genetic disorder that inhibits the blood’s ability to form clots.  Without treatment, an injury that would result in a simple bruise for most people could cause a hemophiliac to bleed to death.  When Jeff was still a toddler, a new treatment became available.  Rather than infusing with whole blood that may or may not have an adequate amount of the necessary clotting factor, technology advanced to a degree that allowed blood to be broken down into various components.  For the first time, a doctor could prescribe a specific dosage of the required factor.   My brothers could receive their treatment at home as soon as they needed it, reducing hospital visits as well as longevity and severity of bleeds.  This wonderful advance in medicine was a life-saver…until it unintentionally became the vehicle which caused the deaths of over 90% of the individuals who received the treatment.  Each vial that contained a dosage of the clotting factor was made up of blood contributions from up to 2,000 donors – significantly increasing the risk that any recipient became exposed to HIV, the virus that causes AIDS.  By the time they were first tested in 1982, all 3 of my brothers were HIV positive.

Jim was the first to experience full-blown AIDS, in 1987.  He didn’t really even get a fighting chance.  He died 5 days from receiving the AIDS diagnosis, 1 week after his 24th birthday, and on his 3-month wedding anniversary.

Jeff was 16 when he moved from HIV positive status to having AIDS.  By the time he was 19, he was spending most of his time in the hospital.  He volunteered as a test subject for every new medication and treatment that was available.  He felt that Jim did not have the opportunity to fight, and since he had these options, he was determined to take every advantage possible.  When Jeff turned 21 on November 16, 1992, he had spent apporoximately 18 of the previous 20 months in a hospital.  I spent time with him everyday, usually staying with him until he could fall asleep.  Which often times meant I was there until 2 or 3 in the morning and sometimes all night.  What I found the most remarkable about the time I spent with Jeff, was his capacity to fully live life, regardless of where he was and what was happening to his physical body.

I remember those times as some of the happiest, funniest, sweetest, most emotionally connected times in my life.  We played cards and board games, watched movies, talked about our hopes, dreams, fears, and regrets.  We w0rked on various art projects and Christmas gifts together.  And we laughed and laughed and laughed.  Once, when he was having a massive attack of cabin fever, I kidnapped him and took him for a ride around town.  It was cloudy, grey and chilly and all he kept saying was what a beautiful day it was – and he was right. 

For the last 2 years of his life, his body was not able to tolerate food because of a parasite living in his digestive tract.  He was fed directly into his blood stream with high protein liquid.  That did not detract from his love of food.  He would often have certain cravings and ask me get that for lunch or dinner for myself and eat it in his room so he could smell it.  Sometime he would even eat a bit – and not make a single complaint when he would later be sick for hours.  He was grateful to have experienced the taste and feel of food.  Of all of the days and months he spent in the hospital, for all of the uncomfortable and painful treatments he endured, I never heard him complain.  He was cheerful, loving, and grateful in every way.  He was a particularly handsome kid and was a shameless flirt with the nurses.  And he was such a charmer, he didn’t flirt only with the young, cute nurses – he mercilessly teased and turned his charisma on for all of them.

In what turned out to be his last Christmas here with us, he and I worked diligently to make presents for the rest of the family.  We had so much fun designing and creating the projects together.  Sometimes he didn’t have the energy to sit up and do the tasks, but would always offer me his critique and make suggestions.  I have such happy memories of those times we shared.  And I have come to realize that Jeff was such an amazing example of living in gratitude.  He never denied that he was experiencing a terminal illness.  He never asked “why me” or begged to be spared the experience.  He also never stopped being positive about life.  He had hopes and dreams for his future and NEVER expressed that he felt he was owed that future.  Should he live to see it – he would be grateful.  Should he end his experience in this physical world sooner – he was grateful for being here at all.  This is such an incredible mindset and even more so, considering his age.  I see now how capable he was at allowing his spirit to take the lead in his life – leaving his ego to just come along and enjoy the ride.  I am now more than twice the age he was then and I am only just beginning to wrap my head around how to do this.

So, Merry Christmas, Jeff.  Thank-you for being such an astounding teacher and for touching my life so deeply in the short time you were here.  I have been so blessed and am eternally grateful for having had you in my life.  I make this commitment to you:  I will use the example you have set to guide me in my effort to live in complete gratitude and will share your lessons with others who can also benefit from knowing your beautiful story.

Copyrighted 12/4/09