This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
a lot that bothers me about the handling of the news about Brittany Maynard,
the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with
Glioblastoma Multiforme (GBM).Probably
the thing that disturbs me the most is the confident way that so many people
have commented on her story and her decisions, as if they have any idea what
has really been going on behind closed doors in her life.
who was there on the scene for most of the 75 days between my dad’s diagnosis
of GBM and his death, I feel like I have a fairly good idea what was going on,
but I also know as a result of my experience that there are some things – even
in highly publicized cases like hers – that anyone on the fringe or further out
cannot know, and that’s the way it should be. Health issues are private and personal. The fact of the matter is that even with as healthy as Brittany looked
when her image appeared in the news just days before her death we don’t know
what the cancer inside her brain was doing to her, and we don’t know the
intricacies of her diagnosis or prognosis.
thing that disturbs me is the way the media has portrayed Brittany as a hero,
as if she was a crusader of sorts because of a personal choice she made to make another
personal choice public.To me, it seem like this
implies that a person who does not make the same choices that she made is not as
important or as courageous.I'm glad that
Brittany and her family had the opportunity to make the choices that they made,
but I also think that people in other situations need an equal amount of
respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.
tricky thing about commenting on such an emotionally charged topic is that
logic often takes a back seat in such a situation, as does respect for the
views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I
see the irony in producing commentary about the error I think others are making
by commenting about the case.The potential
for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge;
this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get
past the hypocrisy of saying "Shame on you for shaming someone else"
or the irony of judging someone for being judgmental.
a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.My dad had a Bucket List too, but he wasn’t
able to get to any of the items on his agenda because of what GBM took from him
from the moment the condition revealed itself.I also felt jealous that Brittany’s medical
team seemed to have communicated with her clearly about her options … or maybe
she was just more able to figure out what her options were because the cancer
in her brain hadn’t impaired that cognitive skill in her … yet.
dad’s doctors, especially his oncologist, didn’t seem to have an accurate view
of what was happening when he went into a downward spiral.It seems like an oncologist would be much
better attuned to medical facts so as not to succumb to the attraction of
denial, but that was not the situation in my dad’s case.
honestly don’t know what my dad would have done had we had all of the facts,
had he been able to adequately process things, and had he had an opportunity to
make a choice that would not put his family in jeopardy in any way.I know that it would have been nice to have
someone – anyone – ask him, or us, about his priorities.The medical team was evidently too rushed, too
uneducated, or too something to think to ask him, and we didn’t know to ask (or
what to ask or how to ask it) or to speak up on his behalf until the very end.
I've said and written about, the diagnosis of brain cancer, especially GBM, is
particularly devastating for many reasons.As a result of the attention brought to GBM by Brittany’s case, NBC news
wrote an article about the unique challenges with brain cancer:
neuro-oncologist who called me to announce that my dad’s case had been accepted
by Duke University is quoted in the article:“Brain
tumors,” he says, “particularly but not exclusively the malignant ones … are in
such an eloquent area of the body that surgical intervention may not be
possible and other interventions such as radiation therapy may come with a
fierce price.” Yet another thing I wish
I wasn’t in a position to have to know truth of.
Recurrence of GBM, the article says, is inevitable, at least as
the treatment options now stand.As I
wrote about in the last post, this is especially true in
certain variations of GBM.
Another thing that bothers me about the coverage of Brittany’s
story is the overuse of the phrase “death with dignity.”
Maybe it’s just a weird point of sensitivity of mine, but I don’t like
the fact that that phrase seems to imply that there is no dignity in making a
different choice – or in not having a choice – about the specifics of an
impending death. That feels like a
really sick kind of competitiveness: who did death better??? Even the phrase “the right to die” seems muddled
to me: I’m pretty sure that dying is a natural process rooted in science, not a
“right.” I think better terminology is “to hasten the end of one’s life” or
something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.
We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the
news of the prognosis and the path she would likely have to travel were delivered. In an instant, though, her choices - and life as she knew it - were stripped away. I think, like a lot of
people with terminal diagnoses who consider “physician-assisted suicide,” that
she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.If you’ve
ever seen someone have a seizure, if you’ve ever seen the terror and confusion
in the eyes of someone who is aware that their own mental state is impaired, or
if you’ve ever seen the look of humiliation and angst on the face of an adult
who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling. If you love a person who is having to endure things like this, plus a
significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then
there’s a chance that maybe you can relate to what it’s like to
feel such a desperate need to try to establish order and control.
wish I could say that I can’t imagine what it took for Brittany’s family to
support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen
happened; it’s a different kind of horror, I would imagine, than what my dad
and my family experienced – but, I would guess, the same kind of love.
This is a song that my dad loved, played by a musician named