Speak Their Names

12079310_10153395021604818_4867164213940879901_n
I’ve had seven miscarriages.

It’s a sentence I’ve grown too comfortably numb repeating, despite the very real pain my heart still carries from the loss. I think when death comes in measures beyond what we can bear our brain tries to cope by focusing on the number itself rather than people behind it. We can’t fully get our head around the 6,000,000 Jews murdered in the holocaust, but we can’t hold back the tears when we’re shown the story of just one. Why is that?

I think it’s because there is holiness in personhood. [Read more…]

When Doctors Hurt Instead of Heal

when doctors hurt
Far too often grappling with a chronic illness is a fight not only for your health but also for your dignity. Many times the medical community can unintentionally compound the pain of those suffering by minimizing their experience or even invalidating them entirely. It can take years or even decades for some patients to get an answer to what is plaguing them, and for some the diagnosis never comes at all. Here are some actual responses I have encountered from doctors in my 15 year journey to getting my diagnosis of Lyme disease.
[Read more…]

I’ve Been in Pain

946770_10153542624579818_1936731990056128860_nIt’s been a long time since sharing my words in this setting. Too long. Its been an awkward enough pause to address it, but doing so is easier said than done. Some bloggers would suggest I call it a “sabbatical.” That’s really just a cop out at this point. Still others would counsel to have me point to my behind the scenes projects to show that I’ve been “in demand” and the brand is still thriving. And yes, I’ve been working furiously on the book and lining up my 2016 speaking engagements, but it’s certainly not what’s kept me away.

Here’s the unglamorous and totally truthful reality:

I’ve been in pain.

Some of it is physical pain. Many of you know I suffer from a debilitating pair of chronic health conditions called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia. Winter is the hardest time of year for both these conditions, as cold and flu season hit with a vengeance and cold weather is a known trigger for additional fibromyalgia pain – especially now that we’ve left mild CA for a state with an actual winter. We even had our first ever snow this year. The pain has been harder to tolerate than I’ve been used to, and our medical insurance situation last year left me unable to pursue any real forms of help. I’ve been fairly open about these issues on my social media accounts, and have appreciated the wonderful support Ive received from both my readers and and from fellow members of the spoonie community. And it would have been easy to enough to leave it there and accept all the good wishes and understanding emails of encouragement. But that’s not the whole truth…

I’ve been in pain.

I’ve been neck deep in pain that was difficult to admit to myself, let alone to anyone else. It’s a pain I’ve tried to rationalize myself out of, explain away, and stifle down it hopes it would disappear on its own. But as with most pain, it really doesn’t work that way. It’s continued on as this persistent ache, popping up at the most inopportune moments and gnawing away at my ability to ignore it. It’s not going anywhere, and the more I attempt to ignore it the more aggravated it becomes.

12079310_10153395021604818_4867164213940879901_n
I’ve been in pain.

At the beginning of 2015, in the midst of our multiple months of unemployment, my husband and I discovered we were very unexpectedly pregnant. It was quite the shock, and I would lying if I said it didn’t take some time to used to the idea. It was literally the worst possible timing, but it was far from unwelcome. We felt blessed to be experiencing the possibility of another miracle baby, one we had been discussing for some time but weren’t quite ready to take the leap to try for yet. That baby was a shining light in the middle of a dark season, a much needed anchor of hope to ballast us in the midst of so much uncertainty.

And then, after a longer than usual ultrasound with the nurse, the doctor said those horrible two words.

Not. Viable.

This marked the 7th child that we wont meet until eternity. A 7th precious little one with no birthday to celebrate, no future to plan.

I’ve been in pain.

12342486_10153485769759818_246129569753746655_nSoon after the loss,  my closest friend was blessed with her own unexpected surprise: a 4th little one to join her beautiful brood. It was a joy I admittedly have struggled to untangle from my own sorrow. The happiness I feel for her is authentic, but it’s difficult not to feel the pain of the could have beens. Up until now all our boys have been perfectly staggered in age. If I had carried my most recent pregnancy to term, this trend would have continued, but with the final pair being the closest in age of the bunch. We would have experienced our first pregnancy we’d actually get to do together. Watched the boys grow together. Done it all together.

I’ve been in pain.

Perhaps the hardest part of miscarriage is that the world around you goes on, and you carry no visible scar to help legitimize your pain. There isn’t a label such as “widow.” There is no grave marker to show. There’s no words to properly explain the gaping hole you know you’re walking around with but simply can’t find a way to show. You’re seemingly alone in it. – and no one knows, or they’ve all but forgotten.

I’ve been in pain.

They say, “time heals all wounds.” Has this ever really been true? If you leave a gaping hole in your leg untreated and wait for time to remedy it, does it really heal? Don’t you usually end up with gangrene? Why have we been taught to believe any different with invisible wounds? Why do we beat ourselves up when our pain doesn’t heal according to some fabricated timeline we’ve assigned ourselves? Why do we feel the need to limit the reaches of our grief? And how can we ever find healing for wounds we are so unwilling to admit, let alone treat.

I’ve been in pain.

1237591_10153541449494818_9191476745620302457_nMy best friend welcomed her 4th little guy into the family a couple weeks ago. He’s beautiful: perfect in every way. And with his birth, I was finally able to admit out loud to my husband for the first time whats really been paining me. Maybe it was the first time I was truly able to admit it to myself. I miss my baby. I miss what might have been. I ache to have a photo, or a birthday, or even a name for this perfect little person I haven’t been able to meet.

I’ve been in pain.

Perhaps finally admitting it is the first step to real healing. It stings like mad, but most wounds don’t heal themselves. And I refuse to ignore this one any longer.