Last year, on the day before Thanksgiving, I found out I have a terrible, rare, progressive and fatal lung disease. Nobody - not one of the experts, not one of the scientists, not one of the doctors – can tell me how many years I may have left to live. But I get that - who but God really knows anyway? However, the one thing they ALL seem to agree on: I have a lot fewer years left than I did just two days before Thanksgiving - when I didn’t know I had Lymphangeileomyomatosis.
It’s called LAM for short, because, let’s be real – no one is going to remember Lymphangeileomyomatosis. LAM. Seriously, God? That’s my new moniker? A LAM(b)? Of all the animals on the planet that might be fun to be named after – I get to be called a lam(b)? A lamb is a pokey, wobbly, helpless baby sheep. As if being called a BABY of any animal isn’t enough, I get to be a baby animal from the sheep family – who are most widely known for their dim wit! Ask anyone what they think of sheep and they’ll reply “stupid”. Because of their confused and moronic tendencies, sheep have even been known to follow each other right off the edge of a cliff.
At the most frail and freakish time of my life, I get to be a lam(b). Not even a full-grown sheep who has learned a bit about sheepdom, but a shallow, immature, dependent little baby sheep. How poetic. And then the real irony is this: I actually feel like a little baby sheep, too. I feel dim-witted, confused, sheared, exposed – and most of the time I want to run – to flee, sometimes right off the edge of a cliff.
But then I read up a bit on sheep and sheep-things – and I found all kinds of reasons that make me proud to be one of them. Here they are:
- Sheep are known to follow their leader – the CLEAR leader. Even blindly, without any understanding of where they are being led and why, sheep will follow their leader. Likewise, the most important goal in my life is to follow my leader, Jesus, wherever and into whatever He leads me. I want to have as much faith as my sheep-friends, so that I will follow Jesus blindly, even when I don’t understand where He is leading me.
- Sheep have such incredibly strong peripheral vision, they can actually see behind themselves without turning their heads. If I am living my life as fully engaged as possible, I need to be able to learn from all that is behind me. I don’t want to live in the past, which would only weigh me down, but I just need to be able to see the past to know how to navigate the future and prevent recurring mistakes. The ability to see behind ourselves - for both me and my sheep friends - could actually spare us all kinds of pain.
- Sheep become stressed when isolated. When I first got my diagnosis, I began wallowing in self-pity and since I knew not a single soul with the same disease, I could not commiserate my misery with anyone. The more I isolated, the more stress and anxiety I experienced. Apparently, sheep have learned that which I still struggle with – we were not meant to do this life alone. We need community. We were created for community. Community is good. And once I reached out to family and friends - my people/my flock - I felt the stress just wash away.
- Domestic sheep have a life expectancy of 10 – 12 years, but some live as long as 20. When I first got my LAM diagnosis, I raced to the internet and Googled it. Of course I did – it’s always our first move in the 21st century. I was devastated to discover that most literature cited LAM as having a 10 year prognosis. As I’ve investigated further, many people are currently suggesting the internet data is outdated, and that with earlier detection and possible lung transplant, LAM patients are now very capable of living 20 years or more – just like my sheep buddies. I don’t know how long I’ve already suffered from LAM, it could be I’ve had it for many years already. But because I’m definitely a domestic sheep and not a wild one, I am praying and choosing to believe I could live for at least 20 more years.
- Sheep have been used, both in ancient times and in modern religious rituals, as sacrificial animals. Is there any possible way that God Almighty allowed me to get this disease in order to call attention to it, raise awareness, potentially leading someone to find a cure, so that ultimately other young women might live? Or bigger yet, is there any possible way that God Almighty allowed me to get this disease, asking me to glorify Him even in the midst of suffering, so that others might be drawn to HIM? Oh my, even the thought of that takes my breath away.
So today, today I am embracing my inner sheep. I am a LAM(b) who is choosing to accept that I am quite dim, that I definitely NEED my leader and I definitely NEED my community, and that I have been called into this suffering and that’s not a terrible place to be. Because of those choices, I refuse to be a quiet little LAM(b). I refuse to surrender to hopelessness and despair. I refuse to accept “no cure”. I am choosing to stand up and shout. I choose to be a ROARING LAM(b)!!!
As you get older you care less and less what other people think about you – so you say whatever you want. When you’re dying it gets even worse. My kids are constantly cringing around me because they never know what I’m going to blurt out next. So here I go: I am unashamedly going to shout from the rooftops that LAM is snatching young women’s lives and it DOES NOT have to be this way! LAM is under-researched, under-funded and under-known. I believe there is a cure and we only need to find it! And so this roaring lam(b) – with a ton of help from my flock - is doing one BIG thing this summer to create awareness:
The 1st Annual LAM Awareness 5k Walk/Run in Hudsonville
August 9th at the Hudsonville Baldwin Street Middle School Baseball/Softball complex
7:30 a.m. Registration begins
9:15 a.m. Walk/Run begins
$32.50 registration fee (Because the average age of onset of LAM in women is 32.5 years old); 5K t-shirt, snacks, prizes, and FUN included.
Register on-line at: http://thelamfoundation.kintera.org/faf/home/default.asp?ievent=1113636
Won’t you please come join me, my family, friends, and community, and help to create awareness for a little-known, but devastating disease? All proceeds will go to the LAM Foundation - http://www.thelamfoundation.org/ - a 501c3 and the sole organization working to raise funds to further awareness and find a cure for LAM.
For questions, please call Kris Zylstra at: 616-648-6323 or e-mail at: firstname.lastname@example.org