Chernobyl

Friday, April 26th was the anniversary of Chernobyl.  Below I have posted a silent film that contains original footage from recently after the reactor explosion but before people were told what they were dealing with.

 

If you are interested in learning more about Chernobyl, I suggest reading the Wikipedia page, as it will lead you to more if you wish to continue learning.  As you learn, do consider Japan and what happened recently in that country and the local and global effects of that disaster.

There are many terrible but fascinating documentaries and studies about Chernobyl and the mutations caused by it.  I have not posted those links, because the images can be quite disturbing.  Consider yourself warned.

To Save a Life, or Not?

Having been the donor for my brother's bone marrow transplant (BMT), I understand the surprise choice this man is making.  While it may seem like an easy choice to many, there is a lot of thought that goes into being a donor and choosing to follow through on it.

It really comes down to the priorities that you have in your life.  This man, obviously, values life over sports.  I'm sure many of us wouldn't mind shaking his hand for the sacrifice he is making.  Yet, it's not as simple down the road, after the BMT.

How so?  Well, BMTs are extremely risky.  My brother had the traditional 50/50 chance given to children BMT patients.  He was one of 2 patients out 6 on the floor that survived their BMTs.  From the donor perspective, you have to be very careful mentally going into the process.  You can't think "I'm going to save a life."  You can't think in such concrete terms like that, because even though your bone marrow might be a perfect match, the patient could still die.  If you aren't guarded, you could deal with guilt later on.

I was a donor when I was 11 and I remember having an official meeting with doctors and the hospital assigned psychologist.  The meeting was required because I was so young.  They needed to impress upon me that it wasn't my responsibility whether Jon survived this transplant or not.  That was a nice relief off my shoulders, but it was a burden having that thought put into mind as well.

At age 11, and suddenly you're introduced to a concept called survivor's guilt.  Not that my life was in any danger, and not that Jonathan didn't make it.  But it was a tough reality to face as an 11 year old.

Now I think about it every time I hear about a BMT.  I think about the donor.  I hope and I pray that they don't deal with any guilt should their recipient die.  At any age that would be a tough situation.  In this situation, given his sports sacrifice, I hope he never faces that possibility.  I pray for a healthy and healing BMT.

Radioactive

A current favorite song at the moment is "Radioactive" by Imagine Dragons.  I must admit that I usually don't watch music videos because they only seem to be getting more strange these days.  However, I did check this one out and was not proven wrong.  A specific concept from a specific image really caught my eye and attention because I can connect it to my sibling cancer experience.

In the video there are these mostly cuddly and innocent stuffed animals (there is an evil one).  What American adult can't remember having a stuffed animal as a kid?  I'm sure there are a few, but the point is that stuffed animals are childhood icons of cuddly creatures.  They are your friends, they make you feel safe, and you even go on fun adventures with them.

Well, the stuffed animals of the video are not your average stuffed animals.  If you haven't watched the video by this point, you really should, or you're going to think I'm under the influence of something.

The stuffed animal that stuck out to me is the hero; it's pink, old, and pathetically lovable looking.  Reminds me of my old pink teddy bear I named "Pinky." (I wasn't much for creativity).  Well, this pink teddy bear is literally radioactive.  Think Cyclops from the X-Men series.  One bad look and you're toast.  Why is this seemingly cuddly and reassuring child's toy really a deadly assassin?

My thoughts went down the weird cancer road in my mind and came up with an analogy.  The pink teddy bear with deadly powers is really like some of the medication we take these days.  I was specifically thinking of radiation because my brother had total body radiation for his bone marrow transplant.

The short story is that the total body radiation is what finally "killed" the Leukemia he was originally diagnosed with.  So while radiation treatment "saved" him, it also doomed him.  His second and third cancers were caused by the radiation that saved his life.  His third cancer required low-level radiation.  Do you see the cycle of doom?  Suddenly that teddy bear doesn't look so cuddly.

A lot of things in life can be summed up in a phrase: "Damned if you do, damned if you don't."  That phrase fits Jon's treatment to a T.  He would have died had he not had radiation.  We've all realized that he'll probably die from a secondary cancer or a long-term side effect of radiation.  Unless you've lived this, you do not know what it is like to look forward to such a future.  Of course, the future isn't written, but I must remain grounded in reality and not expect miracles to keep happening.

Now you know the sword that [possibly] hangs over our heads and has for over a decade.  Each day, month, and year is precious.  Don't waste yours.

Eudora Welty Meets Give Kids the World

 Pictured: Give Kids the World

In my American Autobiography class, no suprise here, I've been reading a lot of autobiographies.  A passage from Eudora Welty's One Writer's Beginnings struck me the minute I had read it.  It was like the passage was an adaptation of a memory or a collection of memories:

In Davis School days, there lived a little boy two or three streets over from ours who was home sick in bed, and when the circus came to town that year, someone got the parade to march up a different street from the usual way to the Fairgrounds, to go past his house.  He was carried to the window to watch it go by.  Just for him the ponderous elephants, the band playing, the steam calliope, the whole thing!  When not long after that he disappeared forever from our view, having died of what had given him his special privilege, none of this at all was acceptable to the rest of us children. . . (Welty 37)

The passage sprang to life for me, because it so truly reminded me of my family's visit to Give Kids the World.  If you've never heard of Give Kids the World, you should certainly read up on it.  It's a magical place that certainly does a very good job putting on a beautiful show for the children and families that visit.  Yet, your golden ticket for entrance is no golden egg.

We stayed at GKTW because Jon had chosen to go to Disney World for his Make a Wish trip.  The villa we stayed in was very nice, the 24 hour ice cream parlor was even better.  The pools were warm and beautiful, the movie theater always had fun movies to watch.  The whole complex and all the buildings are very whimsical, even with a life size toy train to ride.  It's the place you go to, no matter your age, to forget your troubles for a time because your troubles have really been just that bad.

Welty's passage reminded me of our trip and all the other children that stay at GKTW.  While the experience in the moment was great fun, there isn't ever a day where any of us have felt staying there was worth the 'admission price' of a cancer diagnosis.  Yet, sometimes children do not realize that.  I can remember vaguely of other children being jealous of what we had experienced.  They were too young to truly understand what we had paid to be admitted.  I would have been too young if I hadn't been forced by firsthand experience.

Sometimes, when others get to enjoy an amazing event, trip, or honor, we are quick to envy or pass judgement.  I thought about the kids in the passage and how they realized they were "tricked."  We fall for that trick pretty easily and I think that is something we need to guard against.  We don't really know what has happened in another person's life to get them where they are at.  Perhaps it's not enviable at all.  Perhaps it is.

The point is to not fall for the trick, but be thankful for things and experiences you have, because they were and are meant for you.

A Pinch of Tolkien and a Dash of Cancer

One of the most beautiful snippets from Peter Jackson’s LOTR movies comes from The Return of the King.  In the movie, Pippin, the most boisterous and easygoing Hobbit, is commanded to maturely sing in front of Lord Denethor in Gondor.  And man, can that Hobbit sing!  While, Pippin’s, aka Billy Boyd’s, vocals are truly amazing, the lyrics of the song are even more stirring to someone who just loves all things Middle-earth and Tolkien.

However, I can’t say my only attraction to them is my deeply obsessive fan love for Tolkien’s literature (you did pick up that I am a fan, right?).  Somehow, cancer gets thrown into the mix too when I think of this particular song.  Either, cancer sullies a bit of every aspect of one’s life, or every aspect of one’s life tends to give you more insight into one’s cancer experience.  I like to go with the latter option; it’s a bit healthier.

So, the lyrics are:

Home is behind
The world ahead
And there are many paths to tread
Through shadow
To the edge of night
Until the stars are all alight

Mist and shadow
Cloud and shade
Hope shall fail
All shall fade

When cancer is ushered into your life, quite unexpectedly and totally uninvited, you do feel that “home is behind.”  It’s behind you, and you can’t go back.  Even if you turn around, put blinders on, cover your eyes, and escape into the past or a side project—even when you’re facing the past—you can’t go back, and something will eventually pull the rug out from under your feet sooner than later.

“The world ahead” when faced with cancer is a downright scary place to be.  Whether you’re 5 years old or 45, you are diagnosed or a loved one, or you admit fear or put on a brave face, in the end, you want something or someone to cling to while you face the wide unknown world ahead.

That unknown world, Leukemia, brain tumors, breast cancer, Lymphoma, Neuroblastoma, or something else, has so many possibilities, weird medical rituals, loathsome lingo and jargon, and so “many paths to tread” emotionally, spiritually, and physically. 

A lot of it is dark at first.  You just want some light to shine on the circumstances, to cheer things up a bit.  You start racing towards that light, “to the edge of night,” the horizon.  Yet, just before you are there, you realize you still don’t know what the new day will bring.  Do you really want to travel further?  Will night fade and bring good news?  Or is the night all that is left to enjoy, because when day comes it shows what we don’t want to see?

That’s some heavy stuff there.  “Hope shall fail.”  Sounds encouraging, right?  Yeah, not really.  But it is the truth, and I have a profound respect for the truth regardless of whether I like it or not.  It’s really hard to not lose hope.  In many ways, hope is what keeps humanity going on all levels of social structures.  Individuals, families, towns, regions, governments, and nations all have hope.  Yet, we lose hope too.

The point really isn’t that hope ends, or that we stop hoping.  Instead, the point is summed up by “All shall fade.”  If all does end, then hope must run its natural course, just like our bodies.  Both will fail and end.  It’s a natural process.  If we can accept this process as natural and with as much grace as humanly possible, then life starts to look better, even from the cancer perspective.  I didn’t say easy though.  Still, if we accept that “all shall fade,” living life with an emphasis on life and not on escaping death is easier to achieve.

In the end, though rather dark, this song reminds me of the natural process of life, hope, and death.  Considering I’ve been forced into an intimate acquaintance with all three, I think I’ve tried over time to balance my outlook on life.  “All shall fade.”  It’s a simple but hard truth to learn and accept into one’s personal life.

Even When We are Dying, We are Living

Today I read a story about Tomas Young, an Army veteran.  While the story is very political, I’m not interested in tackling politics with this blog post or even on this blog.  What I am interested in is the life and dying experience behind the story.  Tomas wrote an open letter to President Bush and VP Cheney from his hospice bed.  Now, I’ve visited two people in hospice before, and I attended their funerals.  One was my uncle and he died from, yep, you guessed it, cancer.  The other was a young lady who was also dying from cancer.  I think many of us that have not experienced hospice through our own stay or visiting a patient, have this perception that the person living and breathing is dead already, figuratively.  It’s true; they are facing what is most likely their imminent death.  For some reason we think that this person has either a) given up, or b) has finally faced the odds.  I think both of those scenarios often apply to a person in hospice, but they still aren’t dead.  But there is something about them facing their death realistically that weirds many of us out.  So much so, that we tend to think of a hospice patient as already dead because they are waiting for death.  Well, I don’t think that’s a very good perspective to have about hospice patients, nor for hospice patients to have about themselves.

Tomas chose hospice over suicide, as the story indicates.  He chose hospice for other people’s sakes, so they could “stop by or call and say their goodbyes.”  He chose a course of death, of finality on earth, which was selfless.  In dying, he wasn’t completely wrapped up in his own circumstances.  Remember that letter I mentioned?  Well, that was also an action taken during hospice.  See, even in the act of dying, Tomas chose to live.  He chose to give voice to his thoughts and feelings about circumstances very close to his heart.  In dying, he chose to still engage and exude live by expressing himself.

We are all dying from the moment we are born.  Yet, that doesn’t make dying or facing death any easier, especially when it is unexpected.  I think our actions, when we are facing death, tell the most about us.  Tomas’s choices to pursue hospice care instead of suicide and pen an open letter to powerful men that engages in controversial politics is anything but death.  He lives while he is dying a very real death.  These choices show a lot about his personality and character.

What will I be like when I’m dying? (Assuming I don’t die quickly).  What a question most of humanity shuns!  I’ve asked myself this question a lot because of my brother’s cancers and the numerous deaths that have occurred in my life since 2000.  I hope I’m like Tomas.  I hope I think of others.  I hope my nieces and nephews visit me just as I visited my uncle, because it taught me a lot about life and death.  I hope I engage in life, even as it is leeched from my limbs.  I hope I’m witty, fun, and gracious as I deal with all the frustrations and complications.  I hope I don’t grow bitter in my last days.  I hope I have the strength and fortitude to face death with dignity.

A Special Graduation

Below is an open letter I wrote for speaking at my brother's graduation last summer.  Jon was able to graduate at the age of 21, after years of mental, emotional, and physical hurdles.  This was an event that many doctors and professionals told us would probably never occur, just because of Jon's acquired brain injury alone.  Such 'encouragement' did not stop my family though, especially my mother.  She has always been Jonathan's doughty champion, even when she needed her own champion to blaze a path through an unfamiliar educational wilderness.

I wrote this letter while living with my family last summer because of an out-of-state internship in Texas.  A lot was going on in my life, but I knew I wanted to memorialize such an achievement in a special way that our whole family could appreciate, yet others in the audience would understand.  Being an avid Tolkien devotee, I naturally turned my thoughts to the literature I love best.  In the 2-3 hours I was locked in my room, only about an hour was spent typing at intervals.  The rest was spent in thought and much crying.  The imagery I selected to write about and tie into Jon's story, while inspiring in some ways, was also emotionally overwhelming because of truth conveyed in the fiction: the truth about Jon's journey, past, present, and future.

The journey still continues and thinking of the unknown adventure ahead can be so frightening at times.  Yet, looking back from the places we stand now is encouraging too.  So, read the letter.  I will now let it speak for itself.  I can't put into words, again, what I conveyed that evening at graduation.  And yet, what I did convey was only a piece of what I could express.  Forgive the errors please.  I preserve it in the form it was imperfectly written in, and not the form it took when it was spoken.

 

Attribution:  Leaving Hobbiton

Jonathan,

"It's a dangerous business, Frodo, going out of your door. . . You step onto the Road, and if you don't keep your feet, there is no knowing where you might be swept off to."

Over the many years I think we’ve all been swept off our feet a time or two while traveling on the Road God has allowed us; most especially you.  Bilbo’s advice is wise, yet keeping one’s feet is a difficult task, and not everyone does it in the same manner.  I think about the many different ways in which we have attempted to do this, and I think it really boils down not to “keeping our feet,” but to staying on our toes.  We have all needed to remain flexible, you most of all.

The cancer road has not swept you off your feet.  You may have tripped, tumbled, and lost track of direction a few times, but you have never lost your footing on the Road God has given to you.  Instead you have, at different times, skipped, trudged, run, and crawled your way down the Road.  Each bend in the road has held a different adventure.  Some have been pleasant, though most have been painful.  Your endurance is amazing, and is a testament of God’s amazing creation and your faith in Him.  The burden you have borne has cost you much, but allowed you much as well.

If you remember The Hobbit and The Lord of the Rings, then you might remember that Bilbo’s adventure was a very different one from Frodo’s, his nephew.  Frodo even says at one point that his own adventure turned out quite differently than Bilbo’s.  Much like your life, your adventure has been very different compared to your peers and most of the adults surrounding you.  Every stage of your adventure has been different, hence the Lord of the Rings allusions.  J.R.R. Tolkien wrote different versions of the song The Road Goes Ever On, and all were published.  I do not think this was a fickle mistake on his end.  Rather, Tolkien was making a point about “adventures.”  At each stage in our own adventure, we face different feelings and have different perspectives based on the experience at hand.  I believe these versions apply to the Road you have traveled down so far, and I would like to share them with you.

    Roads go ever ever on,

    Over rock and under tree,

    By caves where never sun has shone,

    By streams that never find the sea;

    Over snow by winter sown,

    And through the merry flowers of June,

    Over grass and over stone,

    And under mountains in the moon.

This first and original version was part of Bilbo’s recital in The Hobbit.  As seen by references to a road that leads to “caves where never sun has shone” and “over grass and over stone, and under mountains in the moon,” one understands that this version deals with the newness of adventuring.  How it is exciting seeing things and experiencing new things.  Overall, it is a very pleasant version, it is very innocent.

    The Road goes ever on and on

    Down from the door where it began.

    Now far ahead the Road has gone,

    And I must follow, if I can,

    Pursuing it with eager feet,

    Until it joins some larger way

    Where many paths and errands meet.

    And whither then? I cannot say.

In this next version, a certain level of weariness and uncertainty is seen by lines such as “and I must follow, if I can,” and “where many paths and errands meet, and whither then? I cannot say.”  Uncertainty and apprehension looms beneath the surface.  Suddenly, it is implied that the Road has become less exciting and more serious.  Perhaps, larger than is comfortable for the singer.  The Road is becoming difficult and larger than anticipated.  Hence, the uncertainty of the singer.

    The Road goes ever on and on

    Out from the door where it began.

    Now far ahead the Road has gone,

    Let others follow it who can!

    Let them a journey new begin,

    But I at last with weary feet

    Will turn towards the lighted inn,

    My evening-rest and sleep to meet.

This next version lightens up a bit, because it encourages to “let them a journey new begin” on a Road that has gone far ahead.  The singer is telling others to continue on the Road, but he “at last with weary feet will turn towards the lighted inn.”  His adventure, it seems, has winded him and he must rest and gather strength before continuing.

   Still round the corner there may wait

   A new road or a secret gate,

   And though I oft have passed them by,

   A day will come at last when I

   Shall take the hidden paths that run

   West of the Moon, East of the Sun.

Finally, this last version ends with a mysterious nod to the future Road ahead.  For “still round the corner may wait a new road or a secret gate.”  Meaning, that what lies ahead is ahead and unknown.  This is the Road that the singer prepared for when he rested in the previous version.  It ends on a serious note, when the singer realizes that someday he will take “the hidden paths that run West of the Moon, East of the Sun.”

I hope you understand the different phases of adventuring down the Road you tread, and the Roads Bilbo and Frodo walked.  Each Road, life, will have different phases of adventures.  Some are exciting, some are overwhelming and uncertain, others require rest and preparation for the future, and all lead to a “new road or a secret gate.”  The main point though is that “the Road goes ever on and on,” and we must walk it in the best way we can that glorifies God.

In the words of Gandalf, “All we have to decide is what to do with the time that is given to us.”  With that being said, congrats on graduating from high school.  The Road has been hard and very unique, but it is a phase finished and finished well.  Now, prepare for the future, for whatever God has in store for you as you continue down your Road.

I am very proud of you and love you very much.

-Natasha

Consequences of Knowing so Much

Last week my parents told me a sad story.  While that sounds rather cliché, I don’t want to call it anything else because the ending is unknown and we hope it will be celebratory.  Yet, it doesn’t start off well at all.

A female coworker at my dad’s place of employment has noticed a large bump on the side of her neck.  Apparently, she showed it to her chiropractor and he recommended doing some adjustments, stretches, and waiting to see how it was after two weeks.  He recommended checking with a doctor if nothing had changed by then.  She had told this to a coworker about 3 and a half weeks ago, when the coworker recommended that she show the bump to my dad, since dad has had years of experience with my brother’s abnormal cancers and health issues.  She did and my dad did something totally out of character.  He said, “Go to your doctor, and Do Not wait to get it looked at.”  Dad is the most reserved of the family.  He doesn’t give advice or intervene in others' lives lightly.  If you knew my dad like I do, you would understand that what he saw caused him, forced him, to step out of character and give grave advice.

Fast forward to 2 Fridays ago.  The woman had her first oncology appointment.  She has advanced stage breast cancer.  As of Friday, it was too early to even give an official stage diagnosis, but my family and I we know it’s probably Stage 4 if it’s showing up in her neck and spots are on her lungs.  She is a single mom and the only bread winner.  Keep her in your prayers.

My dad ended this part of the conversation with saying, “Ya know, if I hadn’t said anything, she wouldn’t have gone to her doctor until much later.”  He didn’t say that with smug pride.  Beneath the words there was a mixture of a heavy burden and a sense of having helped in some small way.  That mixture was a consequence of knowing much, and especially of having been through much.

This has made me think about the consequences of the information and experience my family and I have in a different way.  When my father told me this lady had a bump on her neck and exactly where it was, I already knew.  Sure, I knew that it could also be her lymph nodes freaking out from an infection or something else, but I could only see it as a potential cancer because Jonathan had the same thing.  The key to living with this this kind of experience the rest of your life is to find a balance between objectivity and paranoia.

Yes, you read that correctly.  Paranoia does happen.  Under circumstances of death and stress over a long period of time, trifling health scares tend to look like death sentences.  Then, when you realize you’re only dying at the same rate as everybody else and not of something in particular, well, then you shake yourself up and eventually grow tougher nerves.  Yet, then an experience like the above occurs, and you know you aren’t paranoid.  Do you speak? Do you potentially help someone?  Or do you potentially expose yourself as paranoid?  What about speaking, ending up being correct, but nothing helps in the long run?

These are tough questions.  They are questions anybody that has been through a prolonged traumatic experience will face for the rest of life.  I’m not sure there is a correct answer.  I think it depends on the situation and the people involved.  This means we always have to be discerning and use common sense.  We humans don’t have the greatest track record with common sense and discernment, but we should always try.

I think one of the most difficult things about being in my shoes and the shoes of so many others who have been steeped in this kind of experience is watching new people be initiated into it.  The worst is when you hear from someone about a very bad case.  They give you the nitty gritty details that you understand.  They are painting a picture of impending death with these details, but they don’t even know it yet because they are too “green” to understand still.  It’s horrible knowing what is coming down the road for the patients and the families.  It’s horrible watching it happen.  And it’s worse being right.

I think the best part of ‘knowing so much’ is that I can speak a language others can’t.  I belong to a community that really values the importance of life.  I can say “I understand” and really truly mean it, and not be loathed by the other person.  We that belong to this community make a difference in each others' lives because we are the only ones that truly understand such a tough road.