Facebook

Here for the Comments--My Response to the Response to My Food Journey Miracle Post

My recent post about my struggle with food received an overwhelming response. Not all of it positive.

I posted my story in the mast cell groups on Facebook. While most who took the time to read were encouraged and/or happy for me, some just weren't.

I don't blame them. Not at all.

Mastocytosis/Mast Cell Activation Disease affects every aspect of human life. There's no square inch it doesn't attempt to claim. To make matters worse, there's no cure, so it's a disease without much hope. Outside of Jesus, anyway.

And let's face it, Jesus causes trouble wherever he goes.

I thought I'd address a few of the comments made, not because I believe the people who made them will read my response but because you may need to. Some of the questions the comments imply may resonate with you. 

And deep down, who doesn't love a good Facebook debate?



The Comments


"I can't believe I wasted time reading this"


As someone who has battled MCAD, this comment translated as, "I came here looking for real hope, and you gave me a fairy tale." Do you feel the despair in that? Doesn't your heart break just a little? Mine does. 


To this commenter, I would offer this quote by G. K. Chesterton: "Fairy tales are more than true; not because they tell us that dragons exist, but because they tell us dragons can be beaten." 

Jesus slayed the ultimate dragon when he gave his life on the cross. His life was for us, and His life makes us whole. In mind, body, and spirit. God is on mission to redeem it all.


"Unless you have a disease that can be cured by...science...we are all stuck with mast cell. Some people needs their meds to live. This gives false and dangerous hope to people. Unbelievable... I have seen firsthand what a supposed cure can do folks. Putting the word cure on an illness known to be incurable except for periods of remissions can and does cause false hope. Wording is everything. There was no disclaimer...only stating cure. If anyone and I include myself in this.. Wants to say what is helping them as far as diet, supplements Et al then cool, but, unless it has been medically verified as a cure with accompanying information this becomes another blog with the supposed miracle cure. As a scientist, I aware people for reasons still poorly understood can heal. Hope is good. Proclaiming you have a cure without science not so much"


I agree--"wording is everything"--though even the best of us get it wrong from time to time. But the careful reader will notice I never used the word "cure" in my story. Rather, I spoke of healing. Why? Because I want to be clear. While medication, diet, and lifestyle modifications helped, these things did not end my disease. Jesus did. He healed me.


"I'd like to give my view on this as an atheist (and I know a lot of you are already placing labels on me for using that word, but please do not prejudge). I do not believe in prayer or a supreme deity that has the ability to heal us....but...I do believe that prayer can certainly be viewed as a form of meditation and there has been verifiable scientific study done on the effects that meditation has on the body. The most recent National Geographic has an article on the mind body effects of being in nature...scientific data. Including changes in EEG brain waves and drastic reduction in cortisol levels in the body. Doctors are actually writing "prescriptions" to patients to spend time in a natural setting for healing purposes. From my own personal experience, I can slow my heart rate purely by relaxing my body (I suffer from SVTs) and to some extent slow the progression of Mast Cell attacks the same way. This has been seen by multiple ER docs while I was hooked up to monitors. Then there is the whole epigenetics issue. Scientists have shown that these switches can flip back and forth quickly to stimuli and rapidly affect how our body reacts...or over reacts. She is not claiming to have been healed overnight. Nor did she do nothing but pray, she also modified her diet and tried other avenues of improving her symptoms. I believe placing this is the realm of religion is what is bothering some of you, but if you look deeper and place what she is saying in a more scientific framework, maybe you can understand better..."

I appreciate this person for coming to my defense. Truly. She was kind when others were not. Elsewhere, she chastened those who left--in her words--"incredibly rude comments," some of which were deleted by the moderator. That being said, we aren't on the same page. 

2015 was a rough year for me. Though I continued to lean into the Lord day after day, my thoughts weren't always positive. During the weeks before I was healed, I struggled with restlessness, guilt, anxiety, and shame. I was tired, beaten to a pulp by this monster of a disease. My mind did not heal itself. Jesus healed me.

"I always have to wonder, if you are "cured", perhaps the diagnosis was incorrect all along."


I expected this one from the beginning. Before Jesus healed me, I told Brandon and my mom that when He did it, people will say I never had the disease. People tend to reject what they don't understand.

But MCAD isn't a diagnosis doctors toss to the masses like beads and candy at a Mardi Gras parade. It's difficult to obtain, which is why I had to travel all the way to Minnesota to get it. 

While I'm sure God had more purposes for my Mayo Clinic adventure than I can imagine, I understand at least two--Gastrocrom (a medication which allowed me to eat without absolute misery) and that diagnosis. He wants the world to know no disease is incurable when it comes to Him. 


"I'm happy for you Melissa. It seems like your body has calmed down by making nutritional changes. The jury is still out on mast cell disorders, so thinking positive is a good thing. My fear however would be that your overzealous claiming of healing might turn around and bite you - should you regress, relapse, get triggered again etc. I've seen many women in this group already speak of going years "ok" than not ok. For me, EVERYTIME I have gone there - psychologically, emotionally etc and believed "I'm completely better now!" Or "I'm finally coming out of this!" --WHAM. I've been sent back to reality. So I learned to be "cautiously optimistic" and to speak about "improvement" and not black or white declarations that only kick my ass later. Just my share/2 cents. Mast cell (so far) keeps me humble."


I totally understand the warning. I've been in remission. And yes--I thought I was better, then BAM! But this isn't remission. I'm healed. Thank you, Jesus! 

"I am taking this with a grain of salt..be careful with the word "cure." Glad you feel better..please be respectful of all here. Religion, politics cross over many people's comfort level. And seems to imply we are all in the same boat and all able to pray our way to wellness. That is simply not the case. And can lead to blaming those who don't believe to the degree you do or in your religion. Makes me squirm a bit...got my armor on for the replies with this one..I will remove this post if the comments become attacks or too controversial."


Writers, to publish is to give readers permission to quote things you never said and infer meaning you never intended. 

Now let's discuss the idea of "pray(ing) our way to wellness..."

If anyone could've earned healing by faith, prayer, or specialness, it would've been Jenny. 




Before her, I'd never encountered such indomitable faith. Oh, how she loved our Lord! How she sought Him! She was humble enough to seek prayer wherever she went. Churches, communities, and even Dodie Osteen prayed for her healing. Until a few weeks before her death, Jenny believed she would live. Not hoped. Believed.

The woman was so magnetic that people sense her pull in photos. People who didn't want to like her couldn't help themselves. Few love others like she did. She was often the sickest person in the waiting room at MD Anderson, yet she stopped and prayed for people every visit. People who got to live. Before she let hospice put her into an induced coma, she prayed for and blessed everyone at her bedside. She sent me a goodbye text telling me how much she loved me. Jenny went out thinking of and serving others.

If we could achieve our own wellness, Jenny would've been here to celebrate her daughter's fourth birthday four days ago. But after two years of intense suffering, she died. 

Did I survive because I'm so much better than her? Because my faith is stronger? Absolutely not. And if my prayers achieved all that, Jenny would still be here.

This commenter didn't need her armor. She got no argument from me. 

Healing can't be earned. It can only be received.

"I am glad you are doing better, but to claim that God healed you leaves a lot of Christian people who are dealing with the same thing out. I find it distasteful that God would pick and choose you and leave everyone else to suffer. I think there are are too many variables to leave it to "God fixing everything".... Could have been shots finally registered in your system after all that time, anxiety dying down after postpartum time frames end, allowing you belly time to heal after a severe infection.... Ect.... Too many variables to leave it at "God chose to heal me over everyone else."


This commenter doesn't understand my God. And frankly, I don't either.

Human inclination is to fear what we can't control and to dismiss what we don't understand. 

We can't control God, nor can we understand him. So we fear and dismiss him. We explain him away.

And guess what--I've done it, too. 

I have no idea why I lived and Jenny died. I have no idea why some are healed and others suffer all their lives. But that doesn't mean God didn't heal me. And it doesn't mean He doesn't want to heal others. 



Truth be told, these thoughts aren't all that unrelated to some of my own, which have led to questions. Lots and lots of questions:



  1. Did Jesus ever turn anyone away in the gospels? Did He ever say, "No, I'm not going to heal you. It's my will for you to be sick. Your illness brings me glory?"
  2. Does illness bring glory to God? OR is it possible to suffer with something that doesn't glorify God in such a way that God is glorified anyway? Isn't that kind of the spirit of Romans 8:37?
  3. Does God send illness? Is sickness of God? Or does the enemy send sickness and then God uses it for His own purposes with the intention of drawing us to Himself and with a heart to deliver us from it and all lesser loves? 
  4. Does God want us to cuddle our sickness and hold onto suffering because He worked it for good in our lives? Do we need sickness to maintain our sanctification? Should we? Or do we just need Jesus
  5. Is sickness the best way to experience the nearness of God? If so, what does that say about the saints in the Bible? They weren't sick. Are sickness and pain the only ways to cultivate humility and dependence?
  6. Can we best fulfill the Great Commission when we ourselves are sick?
  7. If it was God's will for people to be sick, wouldn't Jesus have been going against God's will by healing them? Wouldn't we be going against God's will every time we prayed for healing?
  8. In Scripture, Jesus doesn't only heal believers. Many he healed weren't believers when he healed them. Some left him, healing in hand, without a thank you. So what does it mean that He didn't do many mighty works in Nazareth because of their unbelief (Matt. 13:58; Mark 6:5,6)? What role does faith play?
  9. The mission stated over and over again in the Gospels is to preach the gospel and heal the sick. Preach the gospel and heal the sick. Preach the gospel and heal the sick. When Jesus sent out the twelve, he told them, "Heal the sick, cleanse the lepers, raise the dead, cast out demons. Freely you have received, freely give" (Matt. 10:8). This doesn't sound like a pick and choose kind of God. So what's the deal?
  10. Could the gap between what we see in Scripture and our experience be our fault? As in the fault of the Church? If so, what does this say about our will versus God's will? If not, does the God who is the same yesterday, today, and forever carry out his will differently now than he did in the first century?



In Summary:


Notice I have all these fabulous questions and no easy answers. I can't offer a satisfactory response to any of them because God is mystery. But here's what I make of my experience with the information I have at this time:

God did not send my sickness. Neither did He waste it. God used my physical sickness to rescue me from sickness of mind, body, and spirit. My sickness was the fastest, most efficient way for God to do this and make me usable. My sickness did not glorify God; I glorified God by leaning into Him through it. God never smiled at my pain; He smiled at what I did with it.

The enemy sent my illness and used it to try and kill me. Again and again and again. He did this because I'm dangerous. He failed because God didn't allow it. God is sovereign.

And yet other dangerous, usable people die. I don't know what this means. But I do know God is sovereign. He is the head of all principality and power (Col. 2:10). Not a moment of this storm was outside of his perfect control, and his character and attributes do not change with circumstance.

God healed me. God used prayer to heal me. My healing would not have happened outside of persistent, fervent, expectant prayer. My prayers. Prayers of family, friends, and elders. The prayers of many.

These prayers kept me alive, kept me close to Jesus, and helped me navigate the path laid out for me. The path led me to a group of people who operate in the Spirit of God. They saw my plight, had compassion, and rescued me through more fervent prayer. They had faith for me when I didn't have it for myself. Enough faith for me to expect something to happen.

My healing was intrinsically tied to deliverance, which was brought about in a personal prayer session (Sozo), a ministry of the group mentioned above.

My healing glorified God. My liberation unleashed more of the Holy Spirit into the world. Now whole and operating in the power of the Holy Spirit, I can better fulfill the mission--preach the gospel, heal the sick and brokenhearted, proclaim liberty to the captives, help the blind to see, liberate the oppressed, cast out demons, raise the dead. Make disciples. Make disciple-making disciples. 

I'm called to give as freely as it has been given to me. Which, you gotta admit, has been pretty freely, so I best be serious about this, yo. 

The miraculous bolsters faith in the miraculous. My prayers are not what they once were because I now believe in the impossible. I ask for impossible things. I believe for impossible things. The impossible has become my new normal.

I know that not everyone I pray for will be healed and delivered, but what do I lose by praying? What do I lose? Time? Energy? Who cares? I get God! Even when the miracle doesn't come. And now that I know it might, by the grace of God I'll never stop asking.

I want to do this thing in such a way that if I'm wrong I'll be the most pitiful fool who ever walked the earth and when I see my Jesus face to face I'll have nothing to regret. And who knows? Maybe one day I'll get to see God do something REALLY cool like raise somebody from the dead!


So yeah...that's where I stand. At the moment, anyway.

Now that I've closed my most recent Facebook debate, let a new one begin. And in the spirit of full disclosure, if you comment, especially if that comment is nasty or despondent, you'll be put on a list and prayed for. You've been warned.






This Little Light of Mine

Licht / Light
Original image via Flickr Creative Commons courtesy of Herr Olsen

"No one, when he has lit a lamp, puts it in a secret place or under a basket, but on a lampstand, that those who come in may see the light." ~ Luke 11:33

Last week was a big week for me, and I wasn't quiet about it. Almost every day, I posted (to Facebook) some major event, a mile marker on my road to recovery.


On Tuesday, I took a walk in the cold with my little man while Sara was in her dance lesson. Within 25 minutes, I developed a headache and felt I was on the verge of a "crash." I hadn't really planned on a crash or what I would do in the event of one. It was just me and the kids a full half hour from home. But as I warmed up in the car, I said a quick prayer. The headache cleared. I could move my arms again with ease. As a bonus, on that same trip I was exposed to Lysol, and didn't have a major reaction. Believe me when I say this is BIG.

On Wednesday, I pumped gas. I couldn't remember the last time I'd done such a thing. Nor could I remember which side of the car the gas tank was on. Nor how to operate the credit card machine at the pump. But I figured it out. Brandon had admonished me to wear my mask and gloves. I did and had no problems. It made me feel like a grown up again.

On Thursday, this happened...


Nope. Not kidding.

The last movie I had seen in a theater was Les Miserables in December 2012, and I left that feature violently ill. Fast forward to January 7, 2016. We see STAR WARS, and I leave the theater in perfect health! I wore my mask on the way in and out of the theater and during the first half hour or so while people were eating. The theater wasn't crowded, it being the first showing of the day during the middle of the week three weeks after the movie's release. With plenty of space between me and my fellow movie goers, I was able able to enjoy most of the film mask free.

Only a few months ago, I doubted I would ever enjoy another movie in the theater. Which was a shame because before I got sick, movie dates were "our thing."

What I didn't post to Facebook is what happened after the movie...

Peanuts
Original image via Flickr Creative Commons courtesy of Daniella Segura

An Encounter with my Arch Nemesis

 

Several triggers have tried to kill me over the years, but nothing has come as close to success as "The Peanut." 

Back in 2013, I tried to make a healthy peanut butter for the kids. Big mistake. That little experiment sent me to the brink of death. I struggled to breathe, my blood pressure dropped, I couldn't think or communicate, and my body temperature plummeted to 94.1 degrees. I thought I would meet Jesus that day. 

Since then, I've had a couple of freak reactions to peanuts. Once, when I went through a frozen custard drive-thru. Another time when I kissed the kids after they'd eaten frozen custard. (Custard became a cuss word in this house, as you can imagine.)

Peanuts don't mess around. They carry a fine dust which easily disperses in the air and settles on things like napkins, custard cups, and hard surfaces. Trace amounts are enough to trigger the sensitive and allergic, and the reaction can be severe. Bad stuff goes down when peanuts and I are in the same room.

When it became clear that God was healing me, Brandon and I agreed we wouldn't experiment with triggers which have caused shock reactions. Secretly, I asked God to allow an accident to occur with each shock trigger, but only when my body was ready for it. 

God answered my prayer sooner than expected. 

After the movie on Thursday, B went into the hardware store where we buy local honey. At the entrance is a massive drum of peanuts in the shell. The honey shelf is right next to it. As are the paper bags.

Brandon returned to the car and placed our paper bag of honey in the backseat. Five minutes later, my face and tongue began to swell and my thinking went all...swimmy. 

I swore. Because I knew what it was and I thought it was going to be bad and we had just been on our first date in three years and it was going to end in an emergency. Or so I thought.

Brandon pulled over. I took my rescue meds. Brandon treated me. And I was fine

Usually, peanut reactions continue to worsen over the course of a half hour, and it takes me a week to recover. Brandon skipped hunting that evening to keep watch over me. I kept smiling at him, assuring him I was okay. I told him about my secret prayer. 

God wouldn't have let that happen before I was ready. He doesn't give good gifts just to yank them out of our hands.

The timing of this little accident was so perfect. It happened before I shared a meal with my prayer group last Friday, which gave me extra confidence even though they were careful to accommodate me. More importantly, it happened before the White As Snow Gala for Project 41, which I will attend on the 22nd.
 (Purchase your tickets here.)

Now we know--even if the worst case scenario happens I'm not going to die. Brandon will be able to relax and enjoy instead of worrying about me the whole time. To an extent. And I'll be brave enough to try the food after all these weeks of asking God to allow me to eat it without issue. 

(I'll let you know how that goes.)

Sharing the Light

 
I realize my constant praise reports may annoy some of my FB friends. I get it. Ecstatically happy people can be irritating. My sick friends may think to themselves, "What about me?" Been there, done that. I know exactly how you feel. 

But after carefully cataloging the descent, it would be seriously neglectful not to document the rise. Don't you think?

My heart is to encourage. For four years, I've been a walking reminder that life can go terribly wrong. That joy can be found in the midst heartache when you lean into Jesus. Now I'd like to be a walking reminder that God hears and answers prayer. I want to be a parable of resurrection. So I continue to display my candle on a lampstand that others may see the light. I pray others will join me with their own healing stories.

Candle lights
Original image via Flickr Creative Commons courtesy of Esteban Chiner

Healing is Contagious


The people who have walked with me through the darkness are the most affected by the light. Maybe more so than me. When you've watched your wife/child/mother/friend fighting for her life against a supposedly incurable, progressive disease, it does something to you when the tragedy is rewritten with hope.

My doctor and friend, Carolyne Yakaboski, often shakes her head in wonder. My parents grin over my latest experiments. Fear loosens its grip on my Superman as he learns to trust and believe. Sara asks me to take her to Sonic so she can play on the playground. 

"Soon," I say. 

But Micah...oh, man. 

Micah is a sensitive kid. He doesn't always show his emotions (as opposed to Sara who wears her heart on her sleeve and wants everyone to participate in whatever she's feeling at the moment). But he feels deeply. Mom reminded me the other day that Micah was adjusting to a baby sister when I got sick. That's a lot of life change for a sensitive little guy. 

Micah has only a couple of memories of me when I was well. He has lots of memories of me in bed. Of being passed around from caretaker to caretaker. Of my absence. He'll be seven next month. I've been sick for over half his life. 

The other day when I told him I would start picking him up from school some days, a gap-toothed smile spread across his face. Tears filled his eyes until one slipped out and ran down the side of his freckled nose. "You made me cry, Mama."

"Does that make you happy?" I clarified. 

He nodded, and I kissed that little nose.

Not long ago, he told my mom with wide, serious eyes, "God has finally heard our prayers."

Lately, he's been praying for other sick people we know with confidence. He believes. And he's been...I don't know. Happier. Almost as happy as when he was a baby.

Mom and I talked as we watched the kids play one day last week. "This is going to stay with him his whole life," she said. "He'll never forget what God did for you. It will shape his relationship with Him forever."

My story probably won't have the same impact on you as it does on my husband and son. But because there's a chance it will shape your view of our good, good Father...

This little light of mine
I'm gonna let it shine
"Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house." (Matthew 5:15)


They Tried to Make Me Go to Rehab

Back in January, I deactivated from Facebook. I needed a break. A breather. A social media detox, if you will.

I had become addicted. And let's face it. I'm not the only one.

Have you seen the haunting photographs from Eric Pickersgill's project Removed? Oh my word, what an indictment!

It's a sad deal when we take something good and make it ultimate. Social media is purposed to bring us together, but when we look to it for validation and use it as an emotional numbing agent, it divides us.

That's what happened to me. So to break my habit, God put me in social media rehab for eight months. Here's an overview of how that went:

Facebook Rehabilitation Diary:


Day 1: Good day. Withdrawal set in this evening, manifesting in agitation and a pounding headache. Apparently, Facebook withdrawal is a real thing. Who knew?

Day 2: Devastating news for our family. Glad I'm not on Facebook.

Days 3-10: Undulating between rage and depression with almost no in between. Trying very hard to be a supportive wife and mother. Wrestling with God over the first few chapters of Job again. I was one chapter from the end of the book, but my heart is in chapters 1-3. So thither I return.

Week 1: Rediscovered Pinterest. In my defense, I'm using it to learn how to write a better book. Mostly. Also, I discovered cat memes.
 

Week 2: Lonely. Had things to say and no one to say them to. I texted instead. That helped. Can't go outside or stand near the door because of the cold So depressed all I want to do is eat and sleep. Since I don't have FB, I spend free time doing novel research.


Week 4: Not as angry now. Seeing good come from the bad. Stronger relationships with B and the kids. Spiritual growth in B. Began Draft 2 of my novel.

 

Month 2:  Beginning to crawl out of The Pit of Despair. Family vacation. Hit my writing stride.

 

Month 3: Look how much I can accomplish without FB! Look at all these inflammatory events I'm missing! All the stress I'm avoiding! What is this new, fabulous world?



Month 4: Turns out...to be accepted by an agent and sell actual, real-live books, I must have an author platform, which includes FB, Twitter, and an active blog. Bubble busted.


Month 5: Draft 3 of my novel complete. It's probably time to return to Facebook. Resistance. Anxiety. Avoidance.


Month 6: Suddenly realized I'm lonely. Returning to FB now would be like a recovering alcoholic strolling the liquor aisle after his dog died.



Month 7: Working on face-to-face relationships. Draft 4 in progress. Facebook return imminent.


End of Month 7: Submit manuscript to beta readers. Deep breath.

(Dog memes are also fun.)

Almost month 8: Logged back in.

What I Learned:

 

1) Facebook is legitimate community.

While nothing can replace the people in front of me, there's something truly grand about the ability to connect with human beings all over the globe. My best friends live out of state. I've met some incredible people who live in other countries. I missed them while I was away. 

2) Facebook is its own kind of social assistance.

We don't have time to keep up with every person we care about. In our fast-paced culture, everyone is swamped. During the eight months I was away, I talked to my best friends maybe 2-3 times each and saw almost no one outside of immediate family. Every now and then I would get a text or hear from mom that someone missed me or wanted to know how I was. People didn't stop caring just because I was away. Neither did I! But without Facebook, we no longer had a convenient way to check in.

3) Facebook hiatus was good for my health.

Facebook stresses me out. It's not just the drama over politics, current events, and what Christian women consider acceptable entertainment (read into that what you will), though that's plenty bad for sensitive folk like me.

The main reason Facebook stresses me out is because I walk through life with this strange, genetically-rooted complex which makes me believe every vague or negative status and delayed private message response is my fault and that I somehow offended this person and I must do something to make it right.

Slowly but surely, I'm learning I'm not the center of the universe and not everyone is thinking of me when they type in their various vague/negative statuses and that I should calm the heck down and give people the benefit of the doubt. *breathes into paper bag*


Stress is mast cell trigger. I don't think it's a coincidence that I enjoyed the healthiest few months I've had in a while during my FB absence.

4) Facebook hiatus doesn't automatically strengthen face-to-face relationships.

It's far easier to swap addictions than it is to learn new habits. I struggled with this throughout my hiatus. If it wasn't FB, it was Pinterest. Or music. Or Netflix. Or my novel. I had to work to connect.

Though my health is stable now, life is still hard. Painful, even. It's easier to self-medicate with technology (since I can't do it with food, liquor, or medication) than it is to acknowledge the pain, process it, and relate to others.

5) The world keeps spinning with or without me. 

For eight months I was invisible to nearly everyone except the people under my roof. And the world didn't end. Everyone was fiiiine. (I know. I can't believe it either.) I find this both humbling and comforting.

6) Now that I'm clean, I enjoy Facebook more. I'm free to enjoy the gift without the gift possessing me. Which is way more fun.

All in all, I loved being away and I love being back. The thing that was poison to me in January is a treat to me now. And that's a good place to be.



What do you think? What pros and cons does Facebook hold for you? Is its cultural impact mostly positive or negative? Does it connect us or divide us? I'd love to hear your thoughts!