Wednesday, February 12, 2014

Afraid to Hope: My Feelings About Mayo

From the moment I made the decision to go to Mayo Clinic, I doubted myself. Not for a moment have I truly believed I will receive help there. Not for a moment. The best outcome I can foresee is a possible diagnosis, and I am not certain I will even receive that. I have changed my mind a hundred times. The question I have asked again and again is, "Is a diagnosis worth risking my life and health, leaving my husband and children for a long period of time, placing this burden upon my entire family, lending myself to the mercy of doctors and a system I do not trust, subjecting myself to a myriad of dangerous and painful tests, and incurring an incredible medical debt?"

My mind answers with a resounding "no." I have done my research. I am aware of the recommended treatments for mast cell activation diseases, and I have tried them. They didn't help. Thus, I turned to natural medicine. I stand by my choice. I am aware of several people with mast cell disease who have improved using natural methods. Looking to Mayo feels like a betrayal of my beliefs. The idea of leaving my husband and children for an indeterminate amount of time grips my heart with steel and ice. When I imagine what it will be like up there, I cannot breathe. But when I stop mentally listing the meager pros and numerous cons and bring my struggle before the Lord, I am enveloped in an ubiquitous sense of peace I cannot argue away.


During the early pitch black hours of February 1, thought and spirit were battling once again when I recalled the story of Gideon. I had read Judges 6 the morning before. The story begins with Gideon threshing grain in secret for fear of the greedy, destructive Midianites who were oppressing Israel at the time. In his fear, the Lord declares to Gideon, "The Lord is with you, you mighty man of valor!" (v. 12) God tells Gideon he will save Israel from the Midianites, but he was slow to believe. Gideon was least in his father's house and of the weakest clan of his tribe (v. 15) and very like me--lily-livered. He felt the enormity of the calling, and it terrified him. He knew he would not be able to take the first step unless he was beyond certain the Lord was with him. So he asked for a sign. And another. And another--until he was forced to believe the word of Yaweh.

When I read the story, I certainly identified with Gideon, but what struck me is God's response. God could have passed him over or killed him for his lack of faith, but He patiently fulfilled all three signs--each one slightly more ridiculous than the one before. The reason for God's patience, I think, is that He saw in Gideon a heart willing to obey Him even to his death if only he could be sure it was God leading him there. I think this resolve is the reason God calls him "a man of valor." He doubted himself, not God. So the Lord did what was necessary to meet Gideon where he was in his mustard seed sized faith, proving to His man that He was with him. It was God's response to Gideon that gave me the courage to ask Him for a sign of my own.

Up until then, I was trusting the fulfilled sign my mother had been given, the wisdom of the three praying women I consider to be my spiritual mentors, and the deep seated feeling in the center of my stomach telling me to go in spite of my hesitation. For a person with a bit more faith, these things probably would have been sufficient. But I am like Thomas--disbelieving the evidence of my own eyes because my mind is so assured of the facts.

I told Him I couldn't go to Mayo unless I was absolutely certain He wanted it. I couldn't do it to myself or my family. I could only go if I knew. So I asked God to do something simultaneously difficult and easy. I asked for a good word about Mayo from an unbiased source if I was to go and a bad word about Mayo from an unbiased source if I was not to go. I told Him I wouldn't make an appointment until I had an answer. I was honestly hoping I wouldn't have to make an appointment at all.

The sign was difficult because I don't often speak with unbiased sources. I see or hear from about ten people on a weekly basis, and two of those are my kids. Everyone close to me has an agenda, and though those agendas differ, the aim of them all is my improvement. These people love me fiercely, and they all have different opinions about what is best for me. Not one of them was qualified to give the word. So that left phone calls and Facebook, and it's unusual to get an unbiased opinion on Facebook. The request was also easy because it was just a word and well--it's God. He can make a donkey speak if He wants.

On February 5, I was driving into town for an appointment and making conversation with Jesus. I told Him that I knew how He did things. I knew He was going to wait until the last possible minute to deliver the sign. He may even seem late to me, but I believed He would send the word. I was watching and waiting for it.

Later that evening, I had an impromptu Skype session with my friend, Madonna Gil. I don't remember which one of us brought up the topic--Madonna told me she had considered going to Mayo for her own disease, but she wasn't sure they could do anything for her. As she said this, I was preparing to tell her about the sign I had asked of the Lord. Before I could get it out of my mouth, she told me that her former roommate's parents had both gone to Mayo, had loved it and strongly encouraged her and anyone to go.

There it was: an entirely unbiased good word. Madonna even echoed my own feelings about the place. I told the Lord only a few hours prior that I was watching and waiting. The sign was on the tip of my tongue as she gave it. And still I tried to explain it away! I argued details like "It wasn't her experience" and "I may have been the one to bring up the subject, so it doesn't count." I didn't know how badly I didn't want to go until that moment. A corner of my mind fretted and prayed about the thing as my friend and I continued our conversation until a sharp, clear command rolled across my brain like one of those moving LED banner screens--"Stop! I have delivered the sign you asked for just as you asked for it."

I shared the entire story with my friend before we ended our conversation. "You were the mouthpiece of God for me today, and I hate you just a little bit for it," I told her with a smile. "I wanted the answer to be 'no.'"

I thought about what I was going to have to do as I laid upon my bed that night, which resulted in an acute panic attack. I thought about how I'm going to be in a nasty, toxic hotel room that will make me very sick, how I'm going to have to go into a hospital full of chemicals and people and doctors who are going to look at me like a commitable lunatic, how I'm going to have to subject myself to tests which could be extremely painful and even life threatening for me, how I'm going to be so very lonely even with my mother there, how I'm going to yearn for my husband and children, how I'm going to be the sickest I've ever been in my life, how hard it's going to be to source and prepare food I can eat while being that sick, how much it will cost, how I could get sicker or even die while there. And all for what? A diagnosis?

In my turmoil, I remembered that God is not the author of fear. I found some peace through prayer and scripture which came to mind. I acknowledged that God was within His rights to send me to my death if He wished, and if He was going to kill me, I was sure He had a perfectly good reason.

Real peace came the next morning. I was reading Judges 13 in which the Angel of the Lord came to Manoah and his wife to tell them they would have a son who would begin to deliver Israel from the Philistines. Manoah offered to prepare a meal for the Angel before He left them, but Manoah was instructed to offer a burnt offering instead. The Lord ascended to heaven on the flame of the offering, and the spectacle was so magnificent that Manoah and his wife fell on their faces. Manoah lamented that he would surely die because he had seen the glory of the Lord.

"But his wife said to him, 'If the Lord had desired to kill us, He would not have accepted a burnt offering and a grain offering from our hands, nor would He have shown us all these things, nor would He have told us such things as these at this time.'" (Judges 13:23)

Even now, tears spring to my eyes as I ponder God's goodness, faithfulness, kindness and patience.

The Fear immediately retaliated against my joy, attempting to quell the beacon of light shining into my heart. "It will be the darkest hour of your life thus far," he whispered.

A brighter light--"I AM nearest when the night is darkest."

I trembled at the thrilling thought. Oh! How near and precious He has been in the past! Do I dare to imagine greater joy and intimacy? For that I'll go! It will be worth it!

I would like to tell you doubt no longer plagues me, but I can't. I feel like I'm giving up on something I haven't given a fair chance to work. I feel like I'm betraying a part of myself. I really believe in natural, holistic medicine. Though it may not be evident to everyone, I am better because of it. My family is better because of it. When people come to me for advice, I share the gospel of natural medicine as freely as I share the gospel of Jesus Christ. I wouldn't do that if I didn't have faith in it.

But natural medicine cannot be my Savior. I already have One, and He demands all of my faith and trust. I do not serve an ideology. I serve a Living God who is wild, multifaceted, unpredictable and relentless. He will do what He wants, how He wants, using who He wants. He has reminded me that just because He is now leading me to Mayo Clinic doesn't mean He is leading me away from natural medicine. Though I am venturing to a new place, I am not to abandon what I have learned. Instead, I will use it as a shield and filter for the next leg of the journey. 

And who knows? I may be wrong. I'm often wrong, and God likes to point out my wrongness at every turn. Maybe they can help me. Whether they can or not, nothing can be allowed greater respect and reverence in my life than the Spirit of the Lord. I am first and foremost His. I am not my own. I must follow where He leads even when I don't understand. Even when I disagree. As Timothy Keller says, "Obedience is hard; disobedience is impossible."

Truly, this is a leap of faith for me. I am diving head first into the unknown. The mist is thick and the darkness deep. I haven't the smallest inkling of how far I will fall or what the terrain is like at the bottom of the abyss. I am afraid to hope. If I hope, I may find myself in a sea of disappointment, and those are treacherous waters indeed. But there is one thing I can count on--no matter how far I fall, "underneath are the everlasting arms" (Deut. 33:27).


Please pray:
  • for peace and courage
  • for needed arrangements (private flight, hotel with kitchen, local source of safe food, appointments, child care, family care, transportation while we are there)
  • for the doctors I will see
  • for all of God's purposes to be fulfilled
  • for safety
  • for my man and kids
I will call in a couple of weeks to set up my appointments. I will update here as things unfold. I am excited to experience and share what God has in store!

Update:

My body is still struggling with daily reactions, fatigue and insomnia. Recently, my pain has been especially bad, particularly in my joints and lower back. I am very excited to report that Jennifer Nervo, a nutritional therapist and author of the blog 20 Something Allergies has taken on my case. The idea is to thoughtfully nourish myself to better health! Once I begin dietary and supplemental protocol, I will post regular reports of my improvement on Facebook and/or here. 

Also, I have an opportunity to safely attend church now! My grandparents' congregation is small, and only a handful of regular attendees go to the Sunday night service. My grandparents have offered to ask everyone to omit their fragrances for my sake. When I am feeling strong and well, I will attend services there. I am thrilled! I have really missed church!

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