It’s funny how life has defining moments. My life will
forever be divided into two distinct parts, the 28 years before my aortic
dissection and the years after. As of today, January 29th, 2016,
I’ve had 20 years after my dissection. It honestly just hit me as I typed this
that I’m actually only 8 years away from catching up to my pre-dissection
total.
On the day of my dissection I went about life as planned. My
family and I went to my sister’s house to watch the Super Bowl. We ate and
watched the game while our kids played. But I remember the feeling of dread I
had deep inside that colors my memories of that day, the feeling that made me
want to stick close to my husband’s side and convinces me, in hindsight, that
beneath my mind’s awareness my body knew something big was happening. I
remember feeling like I couldn’t breathe well in the car. And I remember
holding my infant son longer than usual after I nursed and rocked him to
sleep--wanting to cherish the feel of him in my arms. Three details that would have
faded into oblivion if the day had ended like every other. Those three details
also fueled my anxiety in the post-dissection years. Any time I felt a sense of
dread or the desire to hold a loved one close, it created overwhelming fear
that something traumatic was about to happen.
One of my favorite phrases is, “anxiety is a bitch.” But it
would be more accurate to say that anxiety is a thief or maybe a tyrant. I knew
my survival after my dissection was a miracle. I knew that my survival didn’t
make sense—even my surgeon said he wasn’t going to take credit because he was
amazed I didn’t die. Well, he didn’t say he was amazed I didn’t die but he did
tell my friend he’d never operated on someone whose aorta was that shredded who
made it off the table alive. But every celebration of the miracle, every
realization of how amazing it was that I was alive was followed by the
suffocating fear that I had cheated death and it was only a matter of time
until it got me. Anxiety told me I needed to play my cards right, be constantly
grateful for the time I had with my kids, cherish every moment on this earth,
make only wise health decisions, be vigilant constantly and fight for the life
that had already been given to me free and clear. I guess it’s apparent that
anxiety is also a liar.
Each year, as January rolled around I could feel it ramp up.
Remember Randall Boggs, the creepy, purple, bad monster in Disney’s Monsters
Inc.? That’s the face of anxiety for me. January would start and the low level
anxiety I lived with fairly peaceably would creep out of the closet and start
circling me, usually beneath my conscious awareness. Then he would slither up
my legs and circle around my middle, creating restlessness and stomach aches.
Eventually he would climb all the way up and rest on my shoulders, weighing me
down as he altered my vision and planted horrible fears in my head while
whispering, “this is the year your ‘miracle’ runs out.” Shame would often chime
in and remind me that I could beat anxiety if I would only trust God enough.
Here’s the truth. I couldn’t trust God enough. I couldn’t
will my way out of anxiety. I couldn’t figure out a way to make my body believe
that it had actually survived, that the trauma of the dissection was not still
happening. And having Marfan syndrome means that health issues stay constant
for me, which makes it even harder not to feel like the threat is imminent and
very real. As health issues ramped up because aging with severe Marfan syndrome
is not easy, the anxiety also became a constant companion. Which is when my therapist
entered my life and helped me reclaim it.
I’m not going to go into the details of what she does, or
how she helps me, or what’s in my tool chest. If you are looking for those
details so you can also find some freedom let me tell you not so gently, but
with great compassion and empathy, get yourself to a therapist. You truly can’t
do this on your own. I know you’re reading this and thinking that you’re the
one who can—I thought that too. I wasted a lot of years thinking that. I had
measures of success on my own. But the freedom I have now exists because an
objective professional helps me hone the tools that work for my personality and
life.
This is the first year that I feel like I’m wholeheartedly
celebrating. I’m reflecting on what has happened and feel like I can feel God’s
presence and love no matter what is going on in my body or with my health. I
don’t know why I survived my dissection. Many people don’t survive that. God
also extravagantly loves them. Their lives also had meaning and value; they
also had loved ones who needed them, prayed for them, begged for their
survival. I’m not more special. I don’t have some huge amazing purpose to
fulfill that they didn’t have. So I don’t pretend to understand why I’m still
here. I don’t have to understand to embrace it and be thankful.
I do believe that these “after” years are a gift. Every
year, every birthday, every gray hair, and every wrinkle—all gifts. Whenever
I’m bothered by signs of aging on my body I remind myself that it was almost
all stopped at 28. I would have been frozen in pictures with unlined skin, dark
brown hair, forever young. Each health challenge gives me another reason to
celebrate.
January 29th, 1996 my life was saved through the
hands of a skilled surgeon who replaced a portion of my aorta and my aortic
valve.
January 23rd, 2012 a fantastic neurosurgeon
completed the second, and ultimately successful, attempt to repair a
spontaneous cerebrospinal fluid leak, ending six years of spinal headaches and
worsening weakness to just name a couple symptoms.
January 28th, 2015 a general surgeon repaired an
obturator hernia ending 15 years of intermittent episodes of debilitating
abdominal pain. (Obturator hernias are pretty rare, extremely difficult to
diagnose and therefore dangerous, and often seen in frail old women who’ve had a
lot of kids. That last part never fails to amuse me.)
20 years, 4 years, 1 year. All occurred at the end of
January, which is the month when we Americans celebrate fresh starts, new
beginnings, and setting aside old ways. Last year as I prepared for surgery
amidst panic-laced anxiety, God reminded me of a favorite verse. Isaiah 46:4(NIV) says, “Even to your old age and
gray hairs I am he, I am he who will sustain you. I have made you and I will
carry you; I will sustain you and I will rescue you.” I love the fact that
God will sustain me—I don’t have to sustain myself. But I also love that he
reminds me that he was the one who made me. Marfan Syndrome and all of its
challenges aren’t a surprise to him. He made me and he promises he will carry
me. He’s not going to get tired, neither my problems nor I are going to get too
big for him, he’s not going to regret making me in the first place because I
need to be carried more than I see others needing it. That’s love that I can celebrate.
This year, as I journaled and prayed about celebrating my
life, God led me to another verse. Isaiah 64:3 & 4 says, “We remember that long ago you did amazing
things for us that we had never dreamed you’d do. You came down, and the
mountains shook at your presence. Nothing like that had ever happened before—no
eye had ever seen, and no ear had ever heard such wonders, but you did them
then for the sake of your people, for those who trusted in you. (VOICE) The
first line is the one that really gets me, “You did amazing things for us that
we had never dreamed you’d do.” Before my dissection I firmly believed that if
my aorta dissected I would die. Not that I might die, that I WOULD die. As I endured 6 years of
headaches and 15 years of abdominal pain I thought maybe this pain was just
something I needed to get used to, maybe healing these things wasn’t going to
happen for me. God didn’t need unwavering faith, he didn’t need my vigilance,
and he didn’t need my expectation for these amazing things to happen.
Over and over again, in all of our lives, God does amazing
things. He redeems and he reclaims and he puts the right people in our lives
when we need help to heal. He gives life—a free and clear gift, assuring us we
owe him nothing in return. I remember and I celebrate.
