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.

Do You Have a Headache?

Think for a minute, do you have a headache?

Really focus. Any pressure, any sore spots?  That may seem like a silly question to ask you to think harder about.  But for seven years I dealt with almost daily headaches.  Seven years where that question was a reality where even on the good days, if I really thought about it, my headache was at least a 3 or 4 (on a pain scale of 1-10).  The good days were rare, so it was more common to walk around with head pain at a level of 6 or 7.

My neurologist blamed the headaches on three things: a Chiari malformation, problems with my neck, and migraines.  All three of those things are true; I do have those. But given that my headaches were often positional (improved when lying down) and also responsive to caffeine dosing, I kept asking about the possibility of a spontaneous cerebrospinal fluid (CSF) leak.  The possibility seemed so remote; my doctors were hesitant to follow that trail.

Through a chance reading of an MRI by an astute radiologist, we finally had some evidence that made the CSF leak theory plausible.  In August of 2011, through a painful thoracentesis to draw some fluid for testing, we got a definitive positive diagnosis of a CSF leak and I was referred to the chief of neurosurgery at UCSD for consultation (when you’re considered a high-risk, complicated patient, you get the top guy).  We decided on an epidural blood patch to resolve the leak and got on the schedule of UCSD’s blood patch expert.  In the meantime, I was at my lowest point. I had no energy, my head hurt constantly, I was dizzy, I felt like my brain was foggy, I was nauseated and motion sick just from normal life.  I stopped driving just to keep everyone else on the road safe.

In December, I went in for the procedure and left feeling hopeful. My energy levels were improving and I had headache relief! For 6 days it seemed like it was maybe going to work, but by the end of day 6 the familiar neck tightness was setting in, and by day 7 I had a headache.  

Attempt number one failed, but we had seen enough symptom relief to know we were on the right track.

In January, we took another run at the epidural blood patch procedure.  I was hopeful that this one would work because this time, we would increase the amount of blood used, deliver the patch across three levels instead of just one, and increase the amount of rest to see if that would help the patch hold in place. This tri-level approach unfortunately triggered a reaction in my nerves from T8 to T10, leading to extreme pain circling from my back to my chest/stomach.  I was given drugs and things settled down enough for me to be discharged to go home.

This was when things really got interesting.  

By the next morning I had an excruciating headache.  We called the doctor who was concerned that some blood had made its way up to the brain and he asked me to come back for a CT scan (blood around the brain = very bad).  Thankfully, the scan was clear and I was offered two options, admission for pain management or home with narcotics for pain management.  I chose going home, thinking that would be better.  This decision would soon reveal itself as a mistake as I woke up in the middle of the night with the worst headache of my life. I was dizzy, nauseated, and when I started throwing up my husband said it was time to head to the Emergency Room.  After ruling out a need for immediate surgical intervention, I was admitted to the hospital for pain management.  At first, I was on total bedrest. The doctors didn’t want me to move as they evaluated every angle to try and figure out what was happening.  I wasn’t too excited about moving either, because every movement increased my pain and usually made me throw up.  Over the next five days, several neurosurgeons on the team stopped by my room to weigh in with their opinion. 

Finally, the pain and nausea were under control with medication and the chief of neurosurgery stopped by to give his opinion.  He outlined a few possibilities and future treatment options, but with the pain under control, the best course of action was to simply go home to wait and see if the blood patch actually worked.

In the hospital, I was filled with regret that I had even tried to resolve the CSF leak.  Things were so much worse than they had ever been.  But now, a few months later, I am HEADACHE FREE.  They did it.  They actually patched the leak!  

Patching the leak, although awesome, hasn’t been completely rosy. But each day is a little better.  I still get migraines, my neck is still a mess and causes pain, and the resolution of the leak exposed the symptoms that come from Chiari malformation.  But now, tylenol usually takes a headache away completely.

The question I asked at the beginning is a question that I ask myself regularly.  After seven years of near-daily headaches, living without a headache is still so foreign.  At times, I'll have a rush of good feelings and when I pause to reflect on why, I realize it's because I don't have any head pain.  Being headache free is something that most people take for granted.  For most, headaches are the exception and not the rule. 10 years ago it didn't feel like a blessing to be headache free.  It just felt normal.

I think that's the way it is with our lives.  We can miss being aware of our blessings.  We live our normal lives not realizing how blessed we are just to be in it.  I'm not minimizing how hard daily life can be.  Jobs can be stressful, kids can be demanding, people can drive us crazy.  But my goal is to live my life aware of the blessings that seem so normal that I don't even realize they're blessings.  So ask yourself again, do you have a headache?  No? Then celebrate--because being headache free is a huge blessing.

The Shift

I was in Junior High and I remember waiting for my Mom to get home from a doctor appointment.  I don't remember being worried about her appointment.  I mean, she was my Mom.  She was the pillar of strength for our whole family.  It was dark when she pulled in the driveway and put the car in the garage.  No one else was home and I walked through the dark family room to unlock the back door for my Mom.  When she walked in she stopped and looked at me.  I asked if she was ok and she said, "I have a tumor." And then she started to cry.  I wrapped my arms around her and held her as she cried.  In that instant something changed in our relationship.  I realized that the woman who was always there for me, the woman who went to every appointment with me and seemed so unflappable was human--just like me.  She had weaknesses and fears and needed my support just as much as I needed hers.

My mom and I have always been close but I truly do think her health crisis that year was key in shifting our relationship.  We weren't sure if the cancer she had fought 10 years before was back, and we were so thankful to learn her tumor was benign.  But post-op complications meant a long recovery and my Dad would pick me up from school and drive me to the hospital where I would sit by her side, do my homework and drink apple juice until I couldn't stand the flavor anymore.  I just knew that I went from the childlike idea of Mom being there every time I needed her to the idea that I was so blessed to have her in my life in whatever capacity she could be there.

I think that's why it is so strange to me that I don't want my kids to have the experience of having a sick Mom.  So often I grieve over the normalcy that they miss in their lives.  They were 10 months and almost 5 when my aorta dissected and their experience has always been the experience of having a mom with serious health issues.  They've both had to deal with a mom who was more fragile, who couldn't do everything other moms can do.  I never felt cheated by having a mom with health issues but over and over I've felt like my own kids got ripped off somehow.

My daughter easily slips into the role of caregiver and so I push against that and push her to go out and live her own life.  But since she's 20 I do lean on her more and confide in her.  She's always been one to call me on my moods and can sense when something isn't right.  I don't try as hard to be strong for her.  But my baby boy is a different story.  This man-boy was the kid that I couldn't do the pretend cry with.  It did him in.  If my daughter wouldn't share I could pretend to cry and she would giggle over how silly I was.  If I did that to my son he would cry too.  He couldn't stand to see me upset.  So I carry that.  I try to put on the brave face for him.  "Here's what the doctor has said, and it's going to be ok."  But he sees the stress and yet I won't let him break out of the sensitive little boy mold that I've locked him into.

Today was different.  I was frustrated after a call from the doctor's office.  The procedure that's supposed to be the first step in hopefully fixing my CSF leak needs to be scheduled.  The urgency I feel doesn't seem to match the doctors' and so I was told that we're going to get this scheduled and that the doctor who will do the procedure is really booked up so it might not be right away and she'll work on it and call me tomorrow.  I've had a steady headache, dizziness, back pain, fatigue, etc since July now.  But it's really been happening intermittently for the past 5 years.  It's obviously not killing me but I'm weary.  So I hung up the phone, sat down to trim beans for dinner and silently started to cry.  And that's when the shift happened.  My man-boy came over and wrapped an arm around my shoulder.  He asked me to talk to him and as I poured out my frustration in the middle of my sobs he held on to me and reminded me, "Mom, God's got this."  He asked me what he could do to help me, and as I leaned my cheek against his big, hairy, man-arms I said "you're doing it."   It's that shift like I had with my mom happening all over again.  Maybe it's a shift that's hardest with your baby.  He's not a little boy anymore.  He doesn't need to be protected and sheltered anymore.  It's ok for him to see that I have weaknesses and fears and that I really need his support just like he needs mine.

My son is right.  God does have this.  Every delay in my treatment can be used for great things.  God taught me something so valuable today that I wouldn't have learned without the delay.  My son is growing into a man who is strong and dependable.  He doesn't need me like he did even 5 years ago.  But what a beautiful thing to start to transition to the relationship that we'll have for the rest of our lives.    Thanks for my son God, and thanks for the lesson.

The 4 friends

It's almost been a week since I found out that my pleural effusion is caused by a CSF leak.  To say that I've been overwhelmed with the information is probably a huge understatement.  Part of me is validated that finally I have proof that what I've been suggesting to my doctors for years is actually happening.  Part of me is relieved that the effusion isn't the result of some rare form of cancer.  But I'm not sure what this means for my life and I'm not sure how or even if they'll treat it.  I know that my dural ectasia complicates things significantly.  I have an appointment on October 27th with a neurosurgeon and until that time I'm resting and trying to process and cope.  So since I'm resting I've had lots of time to think.  

One of the things that has been on my mind a lot in the last few weeks is the story from Mark 2  where the 4 men carry their paralyzed friend to Jesus.  One day I was overwhelmed with anxiety as we were waiting for the results to the latest round of tests. I felt weepy and I called my friend and told her I needed prayer.  I shared all of my worries with her and she prayed for me right then.  She also said that she was with a few of our other friends and could ask them to pray too.  That was when I first started thinking about the 4 friends.  I know prayer is the quickest cure to anxiety.  But sometimes my anxiety is so high that I can't seem to think clearly, let alone pray.  After I hung up I felt my heart rate slow back to normal and the anxious fluttering in my stomach subside.  I needed my friends to carry me to Jesus because at that time I wasn't able to get there on my own.  

The other reason that this has been on my mind is because I'm not really that good at letting my friends carry me.  I want to be the strong one.  I want my friends to be wowed by how faith-filled I am in the face of hard circumstances.  I want to be the comforter, not the comforted.  I want to be the one reminding someone of truths from scripture, not the one being reminded.  Truth is, I hate being needy.  But right now, I do need my circle.  I was imagining what it would have been like if I was the guy in scripture.  I can see myself saying "seriously you guys, I can get to Jesus on my own.  You don't need to carry me."  And then what?  Try to drag myself there even though I actually can't make it alone?  Or I can imagine telling them not to mess up the roof to the house because I didn't want to be that much trouble.  As I imagine these things I think of how life would have been different for those 4 friends if they hadn't been allowed to carry their friend to Jesus.  Those 4 men got to witness a miracle firsthand.  They got to be commended by the Son of God for their great faith.  They got to be a part of something huge, something eternal.  

Maybe these things come to my mind because it makes me feel better to hope that my friends are getting something out of helping me.  Maybe it's still the result of my pride that just won't allow me to accept help unless I see it doing something good for someone else.  But I know that something big happens when we carry our friends to Jesus.  Something bigger than any of us can do on our own.  I know that hearts are bonded when we walk through trials with a friend.  I know that relationships are deepened when I strip away my defenses enough to admit my needs.  

God designed us for relationship and some of us (ahem--you know who you are because I know I'm not the only one) like to think that we're ok on our own; that we do fine doing life and faith and relationships on our own terms.  For whatever reason, God won't let me stay in that place of solitude and independence.   

So if you're helping someone out, or offering to help out and your friend seems irritated, just know that it's not you.  It's just your friend having some rough edges ground off and sometimes that doesn't feel so good.   Thanks for the help.