Five years ago today I found out I’m dying. People try to make me feel better by saying: “Aren’t we all?” But five years ago today, they told me I had a lung disease that would most likely take my life many years prematurely.
Since that dreadful pre-Thanksgiving day in 2013, I’ve learned a lot about LAM and so has the medical community at large. We’ve learned that early diagnosis improves prognosis and with increased awareness of this rare disease, we’re starting to diagnose sooner. Since being diagnosed, the FDA has approved a chemo-drug that slows down the progression of the disease. The drug sucks – I get all the side-affects – but I’m still thankful for it because it does seem to have slowed my case of this lung-sucking disease. Many women aren’t so fortunate – it seems younger women get a more progressive case of the disease and some have lost their lives only five years after diagnosis.
When I was first diagnosed, all the literature said 10 years was the average life expectancy with LAM. Now, with our new ass-kicking drug and earlier diagnosis, many are saying prognosis could be much longer – perhaps even 20 – 25 years! It all depends if you get the “fast track” or the “slow track”. I’ve never been very fast at anything, so I’m figuring my odds are good.
Plus, I feel great. I totally live my life with hardly any concessions. I’m more tired than I’d like to be, but that seems to be the pandemic American curse and so I’ll never know if that is LAM or life. I like naps, but who doesn’t? And my other middle-age friends (the honest ones, anyway), say they’ll steal a nap whenever they can, too! I cannot, however, climb too many stairs at a time and our four level home is soon to become an issue. I don’t know what the heck the deal is with stairs – I feel like I could climb a tree, but not stairs. It’s weird.
Five years ago I wrote about my initial reaction to getting LAM. At the time, I thought I’d be fortunate if I were able to live 10 years. I am more optimistic today, but still look at every new year as a total gift – one God didn’t have to grant me.
Every day, every breath – a gift.
But I’m also reminded almost every day that I am not exactly healthy. The worst – the VERY worst thing about LAM thus far has been the slow revelation that I cannot sing like I used to. Last week in church the worship leader picked out the best, most awe-inspiring worship songs ever and as I tried to belt out the alto part, I lost my breath. A lot. I was gasping for air and had to stop singing. Then came a coughing fit. This now happens every week in church.
Those that know me best know how I adore music. It’s always playing in our home, my car, my head. When we built our dream home (that we later sold – to live more simply so others could simply live) I told my husband I wanted central stereo more than I wanted central plumbing! (He graciously granted me both.) I like ALL things musical – instrumental music, piano, orchestra, opera, concerts, musicals AND all genres of singers/bands. On one playlist I have Maroon 5, Queen, the Civil Wars, Lady Antebellum and Mercy Me – no joke. Our last two music concerts were Justin Timberlake and Ben Rector. If it has a musical note attached, I’ll listen. And, despite a ridiculous high probability I’ll get the words wrong, I’ll ALWAYS sing along!!!
The thing is, this past Sunday, when I lost my breath and couldn’t continue singing, we were smack-dab in the middle of Amazing Grace – the place in the song with that bone-tingling crescendo. You know it. No one can help but belt out this line: THEN SINGS MY SOUL, MY SAVIOR GOD TO THEE…
Did you hear that? How amazing is that??? My voice need not sing, because:
THEN SINGS MY SOUL!!!
Oh the joy I felt! My soul can sing! Forever and ever amen – NO DISEASE can ever stop my soul from singing!!
At that moment, I noticed that both my husband (to my left) and my daughter (to my right) were singing at the top of their lungs: THEN SINGS MY SOUL, MY SAVIOR GOD TO THEE…. A row behind us was a rich, full baritone voice harmonizing in the bass clef. Somewhere, very close by, because all I could do was listen at this point, I heard a powerful soprano singing at the top of her lungs. She gave me chills. And the “choir” surrounding me there in church seemed to be encircling me, saying, “No worries, Cindy, we got you covered.” They did not know it, but they were carrying me that day – they helped me feel and know the music and assured me that I always have been, and always will be able to say to my God: How Great Thou Art.
Even though, to us (our entire family), life feels like it may always be a series of loss upon loss upon loss from here on out, miraculously, there also seems to be an invisible net that keeps us from falling – splat – onto the cement bottom of life. With every loss, I truly anticipated the fall – hitting hard pavement – splayed out and bloody with zero chance of recovery.
But it never happened.
Somehow, some supernatural hand grabbed me from my belt loops and snatched me up and carried me back to the functioning world.
Many times I didn’t want to keep functioning. Sometimes I felt the darkness of depression sneaking in and it made me want to scream at people or at the very least, ignore them. Sometimes I wanted to stay in bed all day and pretend Heidi is still alive. Sometimes, still, I want to run and run and run and see if my lungs will explode. Sometimes I want to run far away and move to Aix-en-Provence, France and just pretend the problems of this world aren’t real. But that same supernatural hand that reached down and pulled me from certain pavement splattering, draws me back with supernatural power to life.
He tells me it will all be worth it in the end – that all this pain and suffering is not wasted if I choose to grow from it. He lovingly shows me all the things that make life worth living for – even if I can’t sing anymore. He sweetly reminds me that if I’m still living, then I’m supposed to be here.
Five years later. Another pre-Thanksgiving day – another reminder that my lungs are giving out on me. But it also reminds me that my soul shall never cease the singing of His praises. No one can ever snatch that away from me.
And for that, I can truly be thankful.
THEN SINGS MY SOUL,
MY SAVIOR GOD TO THEE,
HOW GREAT THOU ART,
HOW GREAT THOU ART