Defining Moments

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 29^th, 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 29^th, 1996 my life was saved through the hands of a skilled surgeon who replaced a portion of my aorta and my aortic valve.

January 23^rd, 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 28^th, 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.