The Perfect Match

For those who love anything that resembles a sappy story, I think this blog post might be one that induces what I call the "tear-jerk" reaction, but for those of you who avoid the ooey gooey of love and such nonsense, well maybe this isn't the post for you...at first glance.

I just read and watched this story: Heart Transplant Sparks Romance Between Donor's Sister and Recipient.  While parts of it are a bit overly dramatic, like the music and some of the narration,  I still couldn't help being touched by it.  I was touched because I can completely understand the connection the young woman mentions in the video, but in a different way.

What my family has gone through over the years with my brother's repeated cancers and related health issues has left its mark on my life.  There is this stereotype of macho men comparing scars as a competition between men, or showing scars off to impress others.  When I think of scars, I don't think of a physical mark left behind as a visual reminder.  I think of marks left on the soul, emotions, intellect, and heart.  These are the marks that mean the most.  I have a few scars on my body.  They are trifling things that have no bearing on how I live my life now, other than a helpful reminder of how not to do something.  Yet, the marks from Jonathan's struggles endure, they are woven into my very being.  I cannot forget them, nor do I attempt at forgetting them.  Yet, they aren't the kind of scars that I bandy about to prove myself, win admiration, or use as a light talking point.  These scars are nearly sacred because they have become a part of me.  I have respect for myself, so it would be very disrespectful to treat one part of myself with due respect and not the other.  That’s how I look at my scars.  It’s very important to understand my perspective on these particular scars because otherwise, you wouldn’t understand what comes next.

When I was young, pre-teen through young teen, I understood on my own that I could only marry a person who understood these scars, treated them with respect, and could face the future with them.  And before all that, this person had to be someone I felt comfortable even sharing these scars with.  Having that realization at a young age was pretty life-changing in that it gave me a solid direction and conviction when it came to the later years of dating and beyond.  From that point on I never considered a person as datable unless he met a few very important qualifications, and one of those being an understanding of the cancer scars in my life.  I never set down specifics, such as the person must be a cancer survivor or a cancer sibling.  Yet, that’s exactly what God brought into my life with my husband.  We met because of cancer, because we had cancer siblings.  Our cancer experiences have been completely different, but it’s still a connection, a part of life that we understand about each other.  Without cancer our spheres would never have overlapped.

In this way, I understand the connection between the two in the story.  I understand the donor perspective, though my donation did not require my death.  I understand the importance from the medical perspective of requiring the perfect match for transplants.  I understand that perfect connection between two hearts and two people who can bond over something so tragic, so scaring, yet move past it into something beautiful and healthy.  I also understand how rare all of this is, how cherished it should be.

Starbucks and Cancer

My love for coffee started at a decently young age.  Actually, it was my love and loyalty to Starbucks that got off to good start when I was young.  When my brother was diagnosed in 2000 with Leukemia the nuclear family unit was turned into something else.  It just wasn’t simply nuclear anymore.  While my father worked to keep food on the table and health insurance, my mother was often at the hospital with Jon.  This really doesn’t sound like a big deal until you understand that during the first year after diagnosis, Jonathan spent over 280 days in the hospital.  That’s a lot of time without your parents being at home in a normal capacity.  Also, normal capacity for my family meant that we spent a lot of time with our parents because we were homeschooled and our parents took that responsibility very seriously.  They were always involved in our lives, education, extracurricular activities,…etc.  Every moment was always a nurturing moment.  Yep, even those moments when I was getting in trouble for lying or shirking my chores, my parents were always trying to teach me a greater lesson out of it.  It was pretty annoying at the time, but now I see the value and necessity of it, and am quite thankful.

Yet, this family environment was rather shaken up with Jon’s diagnosis.  Suddenly, and for quite some time, the simple consistency of family had become inconsistent because everything revolved around Jon’s health and care.  I’m not bitter about that.  We were dealing with the situation of a loved one’s life that was battling death.  The severity of the situation made it understandable, even to an 11 year old, but it was still difficult.

In the midst of all this inconsistency, my mother and I would sometimes go to Starbucks for a cup of coffee as a short but needed time together.  Starbucks at this time was an absolute luxury in our family.  Up until this point in my life I had only had drip coffee brewed at home and Tim Horton’s cappuccinos (which are pretty darn good).  A latte was just a funny sounding word that existed far outside my vocabulary.  Things like espresso, mocha, flavor shots, and basically the entire Starbucks drink menu had to be explained to me.  I slowly caught on.  I learned very quickly that I liked mochas over lattes.  Raspberry sounded nice, so I opted for that once and was hooked, yet it wasn’t quite perfect.  It took a year before I realized that the barista was making me a white chocolate raspberry mocha.  I then opted for a raspberry mocha during my next visit and stressed the “not white chocolate, please” to whoever took my drink order.  Obviously, I still hadn’t picked up the lingo, but I was enjoying this little adventure of creating a drink that seemed like creating art.  Finally, I had perfected my raspberry mocha.  Then my father introduced me to peppermint mochas and I was equally hooked.  These two drinks have been a mainstay in my life for 13 years now.

13 years and I’m still drinking the same drinks, with an occasional wild card of course.  You probably think I’m weird.  Well, I’ll just help you out, I am.  But that’s beside the point.  The point in all of this was that Starbucks was one of the few things in the early years of cancer life that was consistent in my life that was also necessarily superficial.  All around me people were dying and my own brother was possibly doing the same thing.  I needed something superficial that could represent a consistent “safe haven” that wasn’t going to die on me.  I could always count on any Starbucks in the city of Columbus to a) be there, b) make what I ordered perfectly every time, and c) not "die" on me (this was pre-2008 economic collapse).  I wasn’t silly enough to cast all my hopes up on the shoulders of Starbucks.  I simply found a little encouragement in the consistency of a drink, a barista, a company.  It reminded me that outside of my own life, there was a whole different world.

It may seem silly that I found such meaning and encouragement in a drink and a company.  However, it’s not silly at all to me.  I think it shows the depths to which humanity can sink when faced with pretty rough times.  I found encouragement in a pretty expensive coffee drink when the rest of my life was confusing and dark.  Unless others have been in similar circumstances at such a young age, I don’t expect understanding.  However, I think it's important for all of us to recognize, to the best of our abilities, when others are going through rough times and have compassion, even if they seem a bit nutty.  Hey, offer them a Toffee Nut Mocha ;-)

The little things in life really do matter.  So cheers to life with a Peppermint Mocha!

Remembering

Yesterday, February 8th, was my brother's diagnosis date.  We have been very blessed to have him in our lives for another 13 years.  When I think about the amount of time, 13 very long years, it actually seems very short in some ways.  When I focus on all the awful things, diagnosis, failed treatment, radiation, BMT, ARDS and pneumonia, 6 months of family isolation, brain damage, near kidney failure, cataracts, osteoporosis, cracked vertebrae discs, liver tumor, depression...and that was only the first 3 years.  Well, my point is, it has all been so overwhelming.  It's a lot for one body to handle in 3 years, let alone live with it all for 13 years and counting.  It's a lot for the mind to handle as well.

The mind makes me think of memory and how my memory has been a bit wonky in these past events, especially when I was young.  Some of the most traumatic experiences, such as being brought into PICU to say "goodbye," I simply don't remember.  I do remember the discussion at home, of being told why I, an 11 year old was being brought into PICU against the hospital rules.  There is only one reason a hospital breaks those rules: you need to say goodbye.  I remember that being explained at home by my parents.  Also being told by my parents that they weren't giving up, even though the doctors said life was unlikely, that we ought to consider "pulling the plug."  Oh, yes, I remember that.  I was horrified.  Surely, if there is life, there is hope I thought.  I've stood by that stance ever since.

As I said, I remember all the circumstances surrounding my hospital visit to say goodbye.  I simply don't remember doing it.  I only have a vague memory of a very dark hall in PICU, with glass walls to see into patient's rooms, and nasty long fluorescent ceiling lights that gave off a light that was a very depressing and poor imitation of real light, sun light.  I hate fluorescent lights to this day, because they remind me of the hospital, of people dying under the light of an intruder and poser of sun light.  Other than that vague impression, I don't remember really anything.  I think my memory did me a favor that day.  I think that event was so traumatic, that my memory just decided to blot itself out for a brief period of time.  I already knew everything, knew and remembered why I was there.  Why let the poor kid suffer with these memories for the rest of her life?  Nay, we'll be kind today, kindness is needed.  If my memory function could speak, well then, I believe it would have said something along those lines.  I know that is not scientific at all, but that doesn't matter.

Memory is just so funny like that at times.  Memory can save your butt on an exam, or it can crush life right out of you by forcing you to remember terrible things.  I've remembered plenty of traumatic things, and quite vividly too.  I've done my best, with God doing most of the handiwork, to let the remembered memories and experiences shape my life positively.  I value life in a way not many others can quite understand.  I understand the need to remain calm and objective when all you want to do is panic or escape.  I also have learned to not judge others based on how they handle facing death.  Some people create the most unique excuses to avoid going to funerals, insist on speaking of the dead in the present tense, shun life, escape into drugs, alcohol, hobbies, relationships...etc.  I escaped those first 3-5 years into novels.  Look at me now, an English major.  That was a positive outcome, but many aren't.  No, I don't judge them, because I've been there.  I pity them and pray for them.  I pray they can forget what needs to be forgotten, and grow into strength, wisdom, and compassion through their past experiences and memories.

A very special picture on a very special day.  My brother left the hospital after having a BMT. He spent about 2 months in the hospital because of this procedure.  It was his only hope of survival and there was only a 50/50 chance.  My youngest brother is giving him a hug because he hadn't seen Jon, except through a window, for 2 months: