Monday, May 26, 2014

Mayo Clinic Trip: Naked Edition

"Blessed is the man who trusts in the Lord,
and whose hope is the Lord.
For he shall be like a tree planted by the waters, 
which spreads out its roots by the river,
and will not fear when heat comes;
but its leaf will be green,
and will not be anxious in the year of drought,
nor will cease from yielding fruit.
The heart is deceitful above all things,
and desperately wicked;
who can know it?
I, the Lord, search the heart,
I test the mind,
even to give every man according to his ways,
according to the fruit of His doings."
-Jeremiah 17:7-10


"If I was a tree," I told Mom as I looked up at its crown, "I would want to be this one."

Our bench sat in its shade. The roots sank thick and sturdy into soft, lakeside soil. Its trunk stood fat and strong at the bottom, and reaching skyward, one became two, became three, became four. Supple boughs hung from brave limbs growing away from Mother, and came to life as the wind rushing off the water proposed a dance. We were mesmerized by the waltz. Sway, two, three. Sway, two, three. How many long seasons of nakedness, of bone-crushing winters she must have endured by the water waiting, waiting to achieve such poise and grace. 

Why must she be naked in winter? I want to know for it seems the Lord requires the same vulnerability from me, and the winter has been long. Ten years I have been sick, frightfully so for two. We began planning this trip six months ago, and here we are waiting, waiting over a long, holiday weekend for test results, for the next step. 

But I am like a tree in Louisiana, shedding its clothes in stages, hanging onto my last layers well into winter. I've been fearful to expose too much, afraid of being hurt. I did not know this about myself until last night when God showed me in the quiet and vulnerability of a bath. It has taken all this waiting to really see myself.

When friends asked why I was going to Minnesota, I would say, "Out of obedience to God," which was true. God made it plain I was to take this trip though I could not see the benefit. In my mind, diagnosis was unlikely and the odds of tolerable treatment options were dismal. I planned and prepared out of duty and love for God, but I dared not hope. Hope leads to disappointment, and disappointment after disappointment wears on a soul.

After the encounter with Arthur on Wednesday, I felt hopeful for the first time. The first time. I met with Dr. Park the next day, and left him feeling that maybe my new found hope was justified. He would check for systemic mastocytosis while doing some gentle "fishing."

And then Friday came along, and pressed the hope right out of me. 

The day was long. I woke before 5 with a twinge in my stomach telling me the day ahead would not be like the day before. I prayed, tried to push it aside, and left the hotel at 6 am. Six in the morning, y'all. The day began with blood work, a necessary photo, and "checking" in the dermatology department. An appointment could not be scheduled until June 23, so I was encouraged to wait to be fit in. I was seen quickly--probably because it was Friday.

Though the doctor was very kind and professional, the appointment was kind of degrading. The hospital gown--if one could call it that--was a joke. I was entirely unclothed and entirely unprepared for such a thorough exam which concluded with no clinical findings of cutaneous mastocytosis, a skin biopsy nonetheless, and a psych referral for anxiety. Apparently, my mask had raised a red flag.

After dropping off my 24 hour urine sample, Mom and I made our way to the psychology department. I had been warned by a friend ahead of time to not resist this appointment. It wasn't too bad. A nice lady asked me many, many questions, which led to the sharing of my story for the next hour. 
The "container of shame"

She peered at me keenly from behind her glasses. "This illness has left you disabled, hasn't it?"

I hadn't thought about it that way. "I suppose it has."

"Do you feel sad, depressed, or hopeless?"

I thought how to answer, and smiled when the words came. "You know, I used to, and I probably still would if it weren't for Jesus. But because of Him, I take joy in my life, and even though my life is small, I feel like it's valuable."

At the end of the appointment, the psychologist and a psychiatrist sat down with me. Were they concerned about anxiety? No. Depression? Nope. They wanted me to see a specialist of behavior modification for my migraines. Migraines. I was baffled. Yes, I have migraines. Yes, they persist, but they don't make the top 10 list of my most pressing complaints. Weird appointment. But they recommended Silver Lake Park to us, so it wasn't a completely wasted visit. 

Afterward, I was starving and on the brink of collapse. We ate lunch in "our" little courtyard, and made our way to The Quiet Room. The Quiet Room is this magical, sound-proofed space filled with hospital grade recliners and darkness. Mom and I both took an overdue nap. A half hour later, I woke with a start feeling strongly my next appointment would be the most discouraging of the day. I prayed and braced myself.

"Our" courtyard. So peaceful and empty. Mask not required.

We waited a long time to see the gastroenterologist, and when we were finally called back I was underwhelmed to say the least. The doctor did not listen to me. I don't think he read my chart. He recommended a gastric emptying test, an endoscopy and a colonoscopy. I asked if he would do a stain for mast cells. He gave me a blank look, and assured me he would biopsy anything which looked abnormal. He had no clue what I was talking about, and had already made up his mind I had Celiac sprue. He asked me for my departure date. I told him Friday the 30th. I left his office with test schedules and instructions for the gastric emptying test, which required me to eat bread, milk, and eggs and drink radioactive water. The scopes were scheduled for the 30th, which would require me to stay another weekend. 

I was so tired at this point, all I could do was let the information crush me. 

The doctor ordered immediate blood work to test for Celiac disease. As I trudged back to the Hilton Building, I was so defeated I knew the only solution was a song. Not really caring if anyone overheard, I sang softly:

Jesus, Jesus, how I trust Him,
how I've proved Him o'er and o'er.
Jesus, Jesus, precious Jesus,
O, for grace to trust Him more.

After labs, we were finally free to leave. While Mom and I waited for the shuttle back to the hotel, she put her remaining brain cells to good use. I could only nod in agreement. No gastric emptying test. Duh. And the scopes--if necessary--could be done at home. Genius! I high-fived Mom for still being able to think. By the time we returned to our room, it had been an 11 hour day at Mayo. I have no idea how I managed it. 

Grace, grace, God's grace. 

Over the weekend, test results trickled in, all coming back normal. I can see all results on Mayo's Portal application, which allows patients to see consult notes, test results, appointments, etc. online. I've trembled inwardly each time I've pulled up my information, feeling a mixture of relief and frustration with each normal lab. I couldn't help but wonder what those trembles meant. 

On Sunday, we went to Silver Lake. Our thoughts and hearts were still as we watched feathered mothers teach their tiny flocks self-sufficiency. 


I read Psalm 1 and Jeremiah 17 aloud to Mom as we gazed at the tree by the water. My tree. Softly, so softly, God began to speak. Through creation and His word, He whispered subtle truths and made connections in my mind. It wasn't until I was naked and alone that He grabbed me by the shoulders. 

I opened my records again on my iPod in the bath, heart beating fast. And suddenly, I knew. I had been lying to myself. The heart is deceitful above all things. We don't even know our own selves. Until God shows us. 

I have been telling everyone I don't know what I want to come of this trip and diagnosis doesn't matter. But if that were true, my heart wouldn't pound so every time I access my records. All along I've been saying, "I don't know what I hope for, so I will hope in God." But what does that mean, really? Here's the truth--I have not allowed myself to want anything too much because I'm afraid of disappointment. Disappointment hurts.

Stoicism may look like faith, but it's a fake. Faith requires risk. Stuffing desires is not risk; it's self protection. It's the very opposite of faith. 

Can I truly claim with Job, "Though You slay me, yet I will trust You" if I don't give God the opportunity to make me bleed, if I don't put my desires on the altar (Job 13:15)?

Here is my honest desire--I want answers, and I want them desperately. 

Suddenly, I was pouring out my heart to the Savior as I sat in the bath, physically and spiritually naked and vulnerable before Him. And it felt good. Nakedness felt wrong in the dermatologist's office where I was being meticulously examined for flaws by indifferent, clinical eyes. In that hotel bathroom, I was being looked upon with the greatest love of the universe by eyes which see me as perfect and radiant. The love made me bold.

For the first time in two years, I begged God for an answer. I pleaded that I would not return home empty-handed. I sobbed with the psalmist in desperation, "Let me not be ashamed!" (Psalm 25:20) For I would be ashamed if I have come up here for nothing, risking my small measure of health and abandoning my family for ten days on a fool's errand. I reminded Him I had prayed for Him to be glorified. "How can you be glorified unless I am given an answer?" I cried through tears. I know my sight is limited and my wisdom is small, but I just can't see it. 

I. am. terrified. It is so scary to make these admissions to myself, more so to make them public. I am standing stark before you, feeling all the cold of uncertainty in my own Winter of Wait. But here is what I know--God brought me up here. God has led me to this terrifying place of risk, trust, and honest faith, and God wants you to see it. There must be a purpose. There just has to be! I don't know what that purpose is exactly, but I know the purpose is good. I know it will showcase His Son.

God gave me these desires. I didn't go looking for them, so I believe He will answer me. I am so, so afraid. But I believe.

Lord, I believe! Help my unbelief! (Mark 9:24)

"Blessed is the man who trusts in the Lord, and whose hope is the Lord" (Jeremiah 17:7).

Maybe one day I'll attain to the strength and grace of that tree. For now, I'm going out on a limb. 

In Jesus' name, I believe.

Now let's see what He will do. 

3 comments:

Heidi Petty said...

You amaze me...your walk with God is what I desire but to be honest I don't want to endure what you have endured!!! I will pray for your continued strength and hope in the midst of this trial and will plead on your behalf for a diagnosis. May the peace that surpasses all understanding surround you may His mighty arms hold you and comfort you!!! I will also pray that the doctors and nurses eyes be opened and that they show compassion!!

Anonymous said...

This is wonderful, Melissa. I am praying for you every step of the way. Strange as this may sound, these are precious times for you and your Mom. Open yourself to every circumstance and listen to God. You've been doing it, keep it up.

Lou Ellen Rhodes Russell said...

This is wonderful, Melissa. Keep pressing forward. As strange as it may sound, these are precious times for you and your Mom. Don't waste a minute of this. Face each day in new strength, listen to God and take courage just as you have been doing. I am praying for you every day.