CHOSEN FOR SICKNESS

My journey to radical acceptance.

Two in a million, that’s me.

It was the summer of 2019, and something was really wrong with me. Multiple doctors were mystified, and by the time I got to a neurologist I had lost sensation in much of the lower half of my body. He diagnosed me with MS, did a lumbar puncture and sent me for five days of massive steroid infusions. I felt better after the first one, and I truly believe he kept me from paralysis and possibly saved my life.

My lumbar puncture results puzzled him though. He sent me to an MS specialist who diagnosed me immediately with a severe episode of transverse myelitis … and neurosarcoidosis. I had never heard of either thing, and while we tried to take in the firehose of information he gave us all I could really hear was “progressive” and “no cure.” He started me on a regimen of drugs, with the goal of keeping me stabilized. The transverse myelitis resolved, but the neurosarc is forever.

Neurosarcoidosis is an autoimmune condition, which basically means that my immune system attacks itself instead of protecting me. I have lesions on my spinal cord and in my brain, migraines and seizures, large and small fiber neuropathy, memory loss, heat and cold intolerance and autoimmune chronic fatigue, to name a few.

It’s a subcategory of sarcoidosis, also rare, which primarily affects the lungs. Although I didn’t have symptoms at the time, a CT scan revealed a number of small nodules in my lungs. Right now, those are in the category of “watch and wait,” as are several lesions on my liver. “Sarc goes where sarc wants” – this is the song of my tribe. As a result I must be vigilant with any physical symptoms I experience because they all must be examined through the filter of sarc.

At last count I have 22 doctors.

I can look back and see that I was experiencing symptoms as early as 1990. They were all treated independently with marginal success and I had some really lousy experiences with doctors. More than one suggested it was “all in my head” and recommended that I see a psychiatrist.

As the months and years went by and more and more health problems emerged, I was starting to wonder if it WAS all in my head. It was a relief to have a diagnosis, finally.

We named “it” Loco before I was even diagnosed, because what was happening to my body felt both insane and unknowable. My husband has been by my side throughout, and he is very much affected – by naming it, Loco became its own thing, not just mine and not just his.

In general I have quite a lot of pain and I am always exhausted. All of this gets worse during a flare, and usually there are some new symptoms as well. Often I don’t recover what is lost.

Right now, I’m in a wicked flare and am on a BIG dose of steroids indefinitely, which is controlling most of my symptoms but they also make me a little crazy. (My poor housemates!) I am slowly tapering down to my previous dose, and so far so good. It’s the lesser of two evils for sure, but not fun.

Debilitating fatigue is the hardest thing for me. I have had to learn to respect my body and set goals accordingly – if I don’t, the result is failure and disappointment and guilt. Do I wish I had more energy? Of course. The reality is that I don’t, and no amount of wishing will change that.

But honestly? The worst thing that has happened on this journey is what I did to myself – and it’s called Google. I researched like mad and joined every support group I could find … and I lived in fear of the what-ifs and projected out every new symptom to its worst-case scenario. I was depressed and anxious on top of not feeling well, ever. Becoming aware of this, and choosing to stay away from the Google as well as not letting my imagination run away with me – these things have truly been more beneficial to me than any medical intervention.

There is no “normal” for me anymore, and I’ve finally stopped trying to find one. Today, this day, is where I must choose to live. Balancing vigilance with staying present in the moment is a challenge, to be sure, but as I’ve practiced it’s gotten easier. This lesson has carried over into the rest of my life, and the difference is incredible. Today isn’t always terrific, but worrying about tomorrow won’t change a thing and is a big waste of my energy, which is in short supply!

Here’s what I know – I am CHOSEN for neurosarc. Does that sound strange? But if I believe what the following verses say (and I do), then that means He has plans for me that are good, and He made them knowing the physical limitations I would face.

You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered! (Psalm 139:16-17 NLT)

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11 NLT)

Can you see how that changed everything for me? If I’m chosen for neurosarc (or anything else that comes my way), that makes it a privilege. Every choice, every response, every word of mine should reflect this truth:

My physical condition is not something I’m simply enduring.

I’ve slowly learned surrender, about being still and quiet, and now can (usually) rest in this truth:

The Lord will fight for you; you need only to be still. (Exodus 14:14 NIV)

And oh how I’ve learned about waiting! I know how to wait impatiently, anxiously, fretfully … and I now know how to wait patiently and without fear, no matter how I feel.

Yet those who wait for the Lord will gain new strength. They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.” (Isaiah 40:31 NASB)

This little poem is on my whiteboard in my office, and I think it will always stay there:

We thought these lives were our own.

It seems we were mistaken.

Bring what is broken

To the Hands that first formed it.

I got to put all of this to the test last September when I was diagnosed with cancer. It was a surprise to say the least! But truly, we had this attitude: “Oh, so we’re doing THIS now!” and it flipped what could have been despair and “woe is me” thinking into … not quite nonchalance, but just putting one foot in front of the other, with genuine cheerfulness most of the time.

It was not a fun ride, obviously. I definitely had some questions for God! I’m so glad we did not stress ourselves with what-ifs through the whole journey. In the end I had terrific results, but even if things had gone differently, what-ifs are just deadly.

A long time ago these verses shouted my name, and they still do:

“But forget all that— it is nothing compared to what I am going to do. For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” (Isaiah 43:18-19 NLT)

God does not leave us in the wasteland. He brings us a river, the river of Life, that transforms and redeems.

He has turned my wasteland into something beautiful that never would have happened otherwise. I have time to write, and the time to do life one-on-one with so many women. I am grateful, and more than ever before, I feel like I’m right where I belong – not in spite of all the health challenges, but BECAUSE of them.

Transformation indeed.

Love,

Angie

—

NOTE: A portion of this article was originally published in Letters from the Fold: Seeing God in a Season of Pain, BL Speis et al. 2024

https://a.co/d/a2o8tOp