When I was little, I read
“Alice in Wonderland” and saw the movie many times. I have heard and seen this
story over and over. Recently, I watched a clip of Alice’s journey “down-down-down”
into the rabbit hole. I could not shake how closely this scene mirrors life
with mitochondrial disease.
In the scene, Alice is going
about her business, when in an instant everything changes. She is thrust
downward into the world of the unknown. That, my friends, is exactly what life
with mitochondrial disease is like. You
have no idea where this path will take you, or how and when things will end.
At the start of your mito
journey, what you do know, is that something is just not right in the body.
Your journey may start slower, or life may change in an instant like Alice’s. You have a multitude of issues – some small
and perhaps some larger ones – all seemingly unrelated. And from there, it just goes on and on, as
you fall deeper into all that comes with mitochondrial disease. You live with unknowns every single day and
life is never the same again.
As Alice falls, she spins and
spins, disoriented and has to work to “center herself”. Unexpected things pop
up along the way at every turn. One
scene in the movie that really resonated with me was when Alice lands in the
chair after falling for quite some time. At first, she is caught off guard, and
appears almost hesitant to sit in the chair. Then, right as she relaxes and settles into
the chair, she is thrust out of it, back
into falling further down the hole.
As the parent of a mito kid,
this could not be a better illustration of our life. Every single day is
different and unpredictable. Our daughter’s symptoms can worsen in an instant,
and she gets new ones all the time. It
is extremely disorienting. It seems as
every time we “find our groove” and settle into a routine and sense of
comfortableness of any kind, we too are abruptly thrust from our comfy
chair. It is difficult not to be in a
constant spin, and challenging to embrace the calm, knowing it is only temporary
and not knowing what is to come or when.
It is dark in that tunnel
Alice is in, and even when she manages to turn on some light, it is dim at
best. She reads some, and just continues to fall. Before your child gets diagnosed with
mitochondrial disease, there is a lot of darkness, most often related to
ignorance. You don’t know what is wrong with your child, and you oftentimes
can’t find anyone who can help. The knowledge about mitochondrial disease is
just not where it should be, even in the medical community. People with good
intentions can only do so much without the knowledge and education needed to
help their patients. Specialists are few, and not always accessible. When you see your child struggle and can't
seem to find answers or assistance, you feel beyond helpless and alone. Once you get a diagnosis (and treatment),
your world gets brighter, but there is always some darkness that remains
because we just don’t know enough about this disease.
Every individual is different
in how the body manifests mitochondrial disease. Mitochondria provide the
energy your body needs to sustain life and growth. They are in every cell of
the body, and can affect your organs.
Your symptoms will be based on which cells are affected, and this varies
greatly from person to person, and the type of mitochondrial disease you
have. Mitochondrial disease is
progressive, and as such, when you have it, you continue down the rabbit hole.
How quickly (or slowly) depends largely on the treatment received and the
overall health of the body.
When Alice finally lands at
the bottom of the hole, it is quite appropriate that she lands upside
down. Mitochondrial disease turns life
upside down for sure. Once you are in it, you are in it for good. But here’s the thing, like Alice, you can
turn yourself around and stand back up.
It’s a choice. There is a lot
that is difficult, exhausting, and painful about Mitochondrial disease, but it
is just one part of this life we were given to live. It should not rob you of
the joys life has for you, or keep you from living life to the fullest. My “mito kid” Natalie has one of the most
vibrant spirits of anyone I know. She is resilient and chooses to live every
day giving it her all. At times, like all of us, her world can get turned upside
down, but like Alice, she does not stay there. She gets up and moves forward,
ready to conquer whatever lies ahead of her.
It makes me chuckle toward
the beginning of Alice’s fall, when she is barely into it, and has just had the
initial big drop. She says, “after such a fall as this, I shall
think nothing of
tumbling down stairs!" My husband and I
talk about this all the time. Things that used to seem daunting, frustrating,
or challenging, are so minor to us now.
We also do not take things for granted as much as we used to. Like
Alice, our whole perspective on life and all that comes with it has changed.
For those people who
are just starting your mito journey, I want to encourage you to keep on keeping
on. You’ve got this. It’s messy and quite a ride, but you are not alone. And
similar to Alice, you may find closed doors over and over while seeking care or
help for you and your child, but do not let this detour you. Persevere and keep
moving forward. Become the expert. Do the research. Be the advocate. Refuse to
give up. And…know it’s okay to have meltdowns. Just don’t stay down. Get up
like Alice and trudge ahead – even when it’s hard. Know there are those that
stand with you even though you can't see us.
Unlike Alice who made
the choice to follow the rabbit and ended up falling down the rabbit hole, this
is not a path we chose to go down willingly. Nevertheless, it is the path we
are on. We do not know what surprises
lie ahead or where this rabbit hole of ours will end. All we can do is do our
best to tackle whatever comes our way and not get so overwhelmed by the journey
that we fail to see and appreciate all the beauty in our lives and in
ourselves.
Link to movie clip: Down the Rabbit Hole
