Friday, February 26, 2016

Marfan Awareness 2016

February is Marfan Awareness Month and every year when it rolls around I think about how my awareness has changed over the years. When I was first diagnosed in 1988, (you can read an old post about my diagnosis here), my awareness was viewed through the lens of medical information. I was in nursing school so I jumped into the facts and stayed there. I was intelligent and a good student. I could study this condition like I studied everything else and make myself an expert and feel like the victor. I wanted to learn everything so I could control and manage my future. Incidentally, this was not an optimal way to cope with this diagnosis but it took me years to realize that kicking into medical mode—and operating there whenever I dealt with Marfan issues—just shoved down the emotional toll a chronic, life-threatening illness can have. Those emotions usually came out as fear and anxiety or anger. But that’s a whole other post.

If you had asked me then, I was fine. I didn’t have significant aortic dilation; I didn’t have major pain symptoms. I didn’t have any major limitations that I wanted to see because I didn’t want to be 3 years into my 4-year degree and need to re-evaluate everything. I also didn’t want to acknowledge that I felt scared and alone. I didn’t know anyone else who had Marfan syndrome. I didn’t know how to navigate the emotions when an instructor giving us information on a cardiac patient asked me, less than a week after my diagnosis…in front of my whole clinical group, if heart transplantation was a possibility for me some day. “Ummm…what?” I didn’t know how to cope when the cardiologist I saw back at home answered my question about prognosis with “well, that’s pretty hard to predict. Some people drop dead at 17, some live to be 35.” This information was inaccurate and out of date even then. But now, thanks to advances in research and care the life expectancy of people with Marfan syndrome is similar to that of the average person. But can you imagine being told that at 21? “Okay, let me just go break up with my fiancĂ© so he can marry someone who’s not going to die young.” (Thankfully Rick wouldn’t let me walk away). I had nowhere to turn a year later when the same cardiologist told me pregnancy was too dangerous to consider. “Ok, let me go try to break up with my fiancĂ© for the second time so he can plan a family with someone else.”

The Marfan Foundation was founded in 1981 but even in 1988 no one told me about them. Not the American Heart Association when my mom called to learn more about Marfan syndrome. Not my cardiologist. Not even my perinatologist when I became pregnant shortly after my wedding. (You can read about my pregnancy here and here.) I navigated those first years after diagnosis with loved ones who knew less than I did and who were also scared and overwhelmed. I had heard horror stories but I didn’t hear anything about the people who were living and thriving with Marfan syndrome. Which, by the way, if you know someone who was just diagnosed with any disease, please save your horror stories. Don’t tell them about your relative or your relative’s friend or your relative’s friend’s neighbor’s sister who died a horrific death. And if you go back to the late 80’s and someone you know mentions having Marfan syndrome don’t ask, “Isn’t that what Flo Hyman died from?”

In the summer of 1991 I sat down to nurse my baby girl while reading my newest copy of American Baby magazine. There was a single paragraph on a page about rare disorders that mentioned Marfan syndrome and listed the Marfan Foundation with a number you could call. Remember this was before the Internet, before blogging, before email even. So I picked up the phone and made a call while sobbing to my sister Doreen. I was crying so hard I could barely talk when she answered the phone. I finally was able to squeak out, “There’s a whole foundation. There’s a Marfan Foundation. I’m not the only one.”

I called the foundation that day, they gave me the number of a local support group contact and in a few minutes I was talking to another person with Marfan syndrome. Someone who had walked through heart surgery and pregnancy and adversity but was living! And she was about 20 years older than I was (she was still doing well last time I connected with her via Facebook a few years ago). The Foundation also gave me the name of a geneticist at University of Washington who was active with the Marfan Foundation. I left my meeting with him feeling like he gave me my life back. I was given accurate information and referred to a cardiologist who really knew about Marfan syndrome and didn’t spout off doom and gloom predictions about my short life span.

Having accurate information was a key first step to living an abundant life while operating within my limitations. Awareness is about so much more than being diagnosed. Obviously knowing the signs and getting that diagnosis saves lives, but having continued support and empowerment as you navigate the healthcare system and the maze of issues that crop up is vital.

Now there are local Marfan Support Groups, online support groups, telephone support groups, a yearly conference, Facebook Groups, even groups tailored for my specific mindset of living well after an aortic dissection…numerous ways to connect, be heard, bounce ideas around and vent to people who are living what you live. Brene Brown, one of my favorite authors, says that the two most powerful words when we’re in struggle are, “me too.” Awareness of the support that’s available and waiting, awareness of others like me, awareness of community and empathy and friendships that bloom across the country and the world, that’s the awareness that continues to change my life. That’s the other aspect of awareness that I celebrate every year during Marfan awareness month.

Wednesday, February 3, 2016

Silence, Solitude and Invitations

This past Saturday, I was challenged to spend 3 hours in silence and solitude, just listening. The challenge came at a prayer retreat led by Alan Fadling, the author of one of my favorite books, An Unhurried Life: Following Jesus' Rhythms of Work and Rest. Before our time of solitude we asked ourselves, "What do I bring to this day? What stressors, what questions, what concerns, what anticipation?"  Then we asked God if there was anything he had for us. So I headed into my time away with the awareness of where I was at emotionally and with the insight that God was inviting me to soak in his peace.

Now for some honesty, I was super excited to attend this retreat when I signed up. I attended a 2 day retreat co-led by Alan last year and thought it was amazing. Plus I love Jesus so a whole day just to focus on prayer sounded awesome. But back to my confession...that morning I didn't feel like going. I was tired. The day before was an awesome, busy day and I need recovery time after busier days. The idea of staying home in a quiet house was so appealing. However, I had encouraged friends to go with me so not showing up to a day that was going to be laid back and refreshing because I was tired didn't seem like a good plan. So I went and I'm glad I did. 

One distinction shared with us today is that prayer is not a task you complete; it's a relationship you invest in. During my 3 hours I was telling God that I didn't know why I fight spending intimate time with him. I love time with him, I love the peace he gives me, I love the way he quiets my mind and settles my soul. I love feeling his love and expressing love back to him. I love that he knows me so well and doesn't need me to fill him in on back story or why I'm reacting a certain way. And yet I will avoid designated time carved out just to listen to him. Now, don't get me wrong. I'm not saying I will neglect God; I spend my days talking to him--asking for insight, direction and wisdom, sharing my heart, requesting help for friends in need and I read my Bible most days. But when it comes to sitting in silence and solitude, I let that time get squeezed out by things nowhere near as important. 

As I shared all of this with God he gave me the coolest example. He reminded me that my husband and I have made it a priority to not let our marriage devolve into simply being roommates. We don't want to get so good at co-existing in the same house, doing the necessary things to keep the household running but neglecting focused time with each other geared to build intimacy. Rick and I make a point of spending time together alone. No TV, no computers, just talking, listening, playing, being open with who we are and where we are at in all areas of our lives. We do this most days. Sometimes it's several hours; sometimes it's much shorter. But we know that without this we will miss out on connection that we both love and feel refueled by. 

This is a great practice for any marriage, but even bigger than that--God invites us into the same thing with him. As I sat by the lake I felt God assure me of two things. The first is that no matter what, his love for me is constant; I can't make him love me less. The second is that he's not going anywhere; he will never abandon or give up on me. But an invitation came with that assurance, and it's an invitation for all of us. It's an invitation to make a practice of spending focused time alone with him so that I'm not simply co-existing in the same place with him. God invites us into a deeply intimate relationship. One where he is able to speak words of love and healing to us and we are able to lean in and know him at a deeper level. He longs for this level of connection with us that can't happen in quick exchanges tossed out as we go about our busy lives. He knows this will refuel us and give us peace. 

God doesn't want to be the friend I bump into at church; he doesn't want to be the neighbor I chat with over the fence. Instead he invites me (and you) over and over to come away, to fall into his arms, to be part of a great love story. 

Monday, February 1, 2016

My Beach is Gone

I have a favorite spot along the beach in Coronado. It's a little more secluded, there's a parking lot right there, and reaching the water doesn't require a super long walk across the beach. I love being able to get out of my car, walk down a few steps and be on the sand close to the water.

As I drove to my spot this week, I had the picture in my mind of what it would look like; I've gone there so many times. But this time, as I got out of my car, I noticed the ramp up from the parking lot had a reinforced barrier instead of just the usual metal handrail, and I was shocked when I reached the top. My beach was gone! The bottom half of the stairs where I accessed the beach were completely buried in sand and the waves were coming all the way up to the rocks, there was literally no exposed dry sand. The storms had completely changed my beach. I was reminded that we could think we have control by creating barriers and concrete walkways and stairs, but man-made objects can’t control the forces of nature.

This was an easy one to deal with. I just walked farther North down the boardwalk to a spot where a small sliver of beach remained dry and set up there. It was different than I expected but the ocean was still beautiful. The waves were big and powerful, the roar of the crashing waves and the hiss as the water receded pulled me into a relaxed state. As I sat and watched the waves I reflected on my life. I had things so planned out in my 20's. I had big plans for my career, big goals that were attainable with hard work and dedication. I had an idea of what my marriage would look like, when my kids would enter the picture, how independent and in charge I would be. But none of those things turned out how I pictured them.

There have been years where I've surveyed my life and felt the same shock I felt when I stood at the top of the stairs and realized my beach was gone. Nothing was as expected. I have even felt like those stairs, buried under a layer of storm residue wondering if I'll ever make my way out. And unfortunately, those times weren't as easy to deal with as walking north a few feet and finding a new spot at my beach. Life can make me feel like I need to grab on and dig in and fight like hell to maintain things the way they've always been. But that's not natural. Life instead is full of roaring, crashing waves and peaceful receding water and allowing myself to be shaped, to be changed, to be fully transformed by all that happens is not a bad thing. None of it may look like I've expected or planned but it doesn't change the capacity for beauty.

Learning to see the beauty when life looks completely different has required learning to relinquish control. I can only do what I can do. There are things that are beyond my ability--that are truly beyond my power--and I can either fight and claw and reject what I didn't plan, or I can allow life to unfold around me while I find a new way to thrive in the midst of whatever is thrown my way. 

"The ocean is roaring, Lord! The sea is pounding hard. Its mighty waves are majestic, but you are more majestic, and you rule over all. Your decisions are firm, and your temple will always be beautiful and holy." Psalm 93: 3-5 (CEV)