The Diving Bell, The Butterfly, and My Dad

A while back I rented the movie The Diving Bell and the Butterfly. What I had known, prior to renting it, was that it was true, involved a former magazine editor who had a stroke and became paralyzed, and then wrote a book, dying shortly after. What I did not know was how much it reflected my own life which would then spur me to realize things I had not been aware of prior.

I won't ruin it for you in case you want to watch it, but will give you this brief summary. The story is of Jean-Dominique Baub, the French editor of Elle Magazine. He was taking a drive one day with his young son when he suffered a stroke causing him to become paralyzed with only the ability to blink. He was in a nursing home for about a year and a half and during that time wrote a book with the assistance of an "interpreter", for lack of a better word. The book was published, became a hit, and eventually was made into the movie. It chronicles memories of his life, his family, what he missed and took for granted but didn't realize until he could no longer enjoy life as he had prior.

The movie is exceptional. It is also exceptionally sad. My purpose here is not to depress anyone, but instead tell a little story and to help you possibly see your life in a new and grateful way.

When I was a baby my dad was diagnosed with Multiple Sclerosis or MS. It hit him hard and quick and by the time I was 3 he was paralyzed and could only blink. This movie really got me due to those reasons, but it also made me realize things I hadn't and should've a very long time ago.

My dad's life was vastly different than Jean-Dominique, except when it came to the inability to move, speak, or function as a normal person. My dad was in a nursing home for five years while doctors tried to figure out a cure, although he had MS for a total of nine years, with my mom caring for him at home the first few until it became too difficult. During this time MS wasn't very well known and no one really knew what to do. My dad could also not speak and we used the blinking method to communicate as well, however, I was little and didn't really have the patience to "talk" for long. Instead I would help the nurses, make friends with the nice elderly people and play games all over the nursing home since nothing was off limits to "John's little girl". We were there every day, several times a day, for those five years.

Communicating through blinking is a long and tedious process. It was also the 80's then and I found it surprising that in the time Jean-Dominique used that same method it was years and years later and that was still as advanced as they'd gotten. The thing that got me was hearing and really seeing for the first time how hard that life was. My dad had to live if for a much longer time than Jean-Dominique and to see what a challenge it was made me realize things I hadn't before.

I realized how little my life really sucked or just how easy I really had it when I thought I didn't. How nothing I have gone through or dealt with could ever compare to what he had to do every single day. How I needed to appreciate life more and all the things I am able to do and just simply quit complaining. It was a good wake up call to start living my life appropriately.

Below is the poem I wrote after I saw the movie and had all of these realizations. Life is to be lived, even in the difficult moments, and one must always remember that it really could be worse and we should never, never take for granted what we have been given or the strength inside of us to make ourselves and our lives better.

I Have Never Suffered

I thought my pain was endless

That I was empty, hollow

Destined to suffer for eternity

Until last night

Until I realized

I’ve never

Never

Never suffered like you

My shadow filled days will never compare to your pitch black nights

And days

And weeks

And months

That never ended

That lasted for years

That were still, quiet, frozen

That you couldn't escape

How you only had one thing to look forward to

Every. Single. Day.

One moment

And when it was time to say goodbye for the day

The Nothing returned

The emptiness of a heart still beating

A brain still thinking

But a body unmoving

Trapped in your own existence

Never to hold your daughter again

Never to kiss your wife

Alone in a way no one could feel but you

I will never truly understand

I thought my pain was endless

That I was empty, hollow

Destined to suffer for eternity

Until last night

Until I realized

I’ve never

Never

Never suffered like you

My empty heart will never compare to your broken, shattered soul

To a dream that ended before it began

To a life unimagined

To a love so rare and true that no one

No one

Will ever fill that void

Or ever make you whole

I never understood how alone you really were

And still are

And may always be

How you sacrificed it all without question

Without regret

And how somehow you feel guilty for something you couldn’t control

Something you didn't ask for

Something you bravely never walked away from

And freely sacrificed everything

Everything

That a normal life would resemble

For us

For him

And now, for her

I will never truly understand

I thought my pain was endless

That I was empty, hollow

Destined to suffer for eternity

Until last night

Until I realized

I’ve never

Never

Never suffered like you

My emotional numbness will never compare to your heart breaking aloneness

To losing yourself to age

And time

And feeling like a burden to others

Where you can no longer see well

Or hear well

And can barely get around your own house

And how you stay, I know this, you stay

For me

Because I am selfish and can't let you go

I will never truly understand

I thought my pain was endless

That I was empty, hollow

Destined to suffer for eternity

Until last night

Until I realized

I’ve never

Never

Never suffered like them

I will never know the stillness of a man immobilized by his own body

Unable to decide for himself

Unable to take care of his family

Unable to do anything

Anything

But blink

I will never know the emptiness of a woman who lost everything she had ever wanted

Who sacrificed it all

And who waited patiently

For years

Until hope ran out and she was truly alone

Because there was only one person for her

And I know that nothing

Not even time

Will heal her heart

I will never know the aloneness of a woman who’s lived for nearly a century

Who’s seen her best friend and lifelong companion pass on

Who has aged so gracefully

And been so independent

Until now

When time has started to set in

And slowed her

Changed her

Made her begin to fade away

I will never truly understand these things. I have felt but a fraction of what they have lived. I have seen nothing.

And they may never truly know how exceptional they really are           

How amazing

And strong

And brave beyond measure

And how wonderful they are

How so few would do what they have done

How most would have given up

How practically no one would have been so selfless

So kind

So loving

To stay

To try

To do it all

For me

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