Hindsight is 20/20, or pretty close

Around here, we have a bit of a Star Wars obsession. It happened by accident. All of my kids had seen bits and pieces of the original trilogy, but it wasn’t until Eli the Wildman, my 3 year old, saw it, that a love was born. He was two and a half at the time. He saw Star Wars, A New Hope IV, and he LOVED it. His favorite character is Darth Vader, everyone else is just a distraction. Star Wars and its role in our daily lives deserves its own post! The rest of the children have seen the movies now, because of Eli. I was sitting with them one day recently, and they asked in their sweet childish wonder, “Momma, is the Dark Side stronger than the good side? Is it stronger than the light?” I think I stole the answer from Yoda, when I answered, “No, but it’s easier to follow.” Oh, how that simple statement affected me. I thought back, to a year ago, when I felt a pull to the “Dark Side.” Seems a little silly to make the analogy to Star Wars, but it makes sense, in a weird way!

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This time last year, I was in Michigan. I had confirmed nerve damage, and constant, burning pain in addition to decreased motor function of that nerve. A doctor in Royal Oak, Michigan was world-renowned for his use of neuromodulators in patients with chronic pelvic pain. Long story- very long story, but I ended up choosing to see him and try a new model of device. It did not have a box to be implanted, like every other neuromod on the market. After the mesh debacle, the idea of having a foreign object in my body, and having surgeons tunnel to attach leads to my spine, gave me a panic attack- literally. The new device did not involve tunneling and the leads were the size of a spaghetti noodle. The “box”, or controller, would be worn outside of my body on a belt, and the whole thing was wireless. It took James and I three days to drive up there, because I couldn’t ride in the car for too long without a lot of pain. I laid the seat back flat, and had ice packs covering me. I was on fentanyl, lyrica or gabapentin, and other meds to control the unceasing agony. I do not use that word lightly. It was agony.

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This was one last hug, before I left for the long trip.
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In the driveway, before we left.

James flew back home after my initial surgery to have the small leads placed, and my mom and Aunt Janet flew up to stay with me during the trial period. What should have been a few days, turned into a month. It coincided with Lent. We used the time the best we could, and read our daily offices out of the 1928 Book of Common Prayer, read the Bible, said Hail Mary’s and I also read about the lives of saints. I have a diary from this time, and photos as well. It is so painful to remember- I could write for hours. Every day, I awoke, hoping that the device would work- I would be able to see SOME difference in the pain level. Instead, the pain was unchanged, and actually increased at times. I called the doctor and the device rep often to check in. I was completely honest in my review of the symptoms, but they kept telling me “it takes time to work.” I was determined to tough it out, certain that if I was brave enough and persevered, I would be rewarded in the end. Just give it time, Amy- again and again and again.

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Mom and Janet, during our daily reading time.

I was away from my children for a month. I missed my baby girl crawling, babbling little words, I missed ballgames, tears, laughing, dinners, hugs… I lived in a bubble, in our airbnb’s for a month. It cost a small fortune, and each day brought renewed hope, and then frustration at the end of it. We prayed for hours each day. Hours. I begged the Lord for guidance, not just healing, but wisdom to know what path to take. When you have a neuromodulator implanted, it is a trial period to begin with. Then, you have to decide if you want the final device- if you have seen at least 50% improvement. I knew I was one of the first people to receive it, what I did not know, was that I was the THIRD person, and the second woman… and that it hadn’t worked for the first woman. Wish that detail had been mentioned. All of my hope was riding on this working. I had already tried numerous treatments, and they all failed.

Through the haze of very heavy medication and pain, I was trying to discern the “why” in all of it. What was the reason for all of this? If I prayed enough, said the right things, would that equal the desired result? Was this suffering all for a lesson I needed to learn, and when I “got it”, the suffering would end? Guys, my head was foggy, fuzzy, and I had not had a “good” day, in 8 months. I was grasping for answers and a plan and for everything to make sense. I missed my children and husband for a month, but it was all going to be worth it because I grew in my faith, and came home healed. That was my plan. Every day, I sunk further and further down in mood because none of that was happening. I had more questions after praying so much, not fewer. The pain muddled any clear thoughts I had.

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Our former priest brought me communion during my stay.

The morning came for me to decide whether or not to get the final device. My mom and my aunt drove me to the hospital. I remember being in so much pain, I was curled in the fetal position on the floor of the waiting room- in a haze. The doctor called me back, and asked if I wanted to get the final device. He said, again, it just takes time. I blamed myself for being impatient- maybe it was my fault, I hadn’t waited long enough to see progress. I didn’t want the entire month to have been a waste of time and money, so I said, “yes.” The doctor, who I really liked (despite a difficult trial) suggested EMG testing on the nerve while I was under anesthesia. The pudendal nerve has sensory as well as motor function. He knew that the sensory part was stimulated at a certain level (Hertz, etc. on the device), but they hadn’t checked the motor part of the nerve. I had been running the device between 10-14 per the doctor’s instructions, for three weeks. When I woke up, he entered the room and explained that the EMG tests showed I should never have run the device over a level 1! I had overstimulated the nerve for weeks, and caused more pain. Just like I described, multiple times. The final lead was placed directly on the nerve, and I was assured that if I ran the device on the correct level, I would see pain relief. It was practically certain. Phew! I was so relieved- still in a haze of pain, but with renewed hope. My perseverance had paid off!

My mom and my aunt flew home, and James flew up. He drove me back down to GA, this time in only two days. When he arrived, I was afraid to tell him that I didn’t feel any relief yet, like I had been promised. Actually, I felt worse, again. The car ride home was tense because I was trying to act like I was better, but I could barely put a sentence together. James figured out that I was hiding a tremendous amount of pain, and to say that he was disappointed, is a vast understatement. I can’t imagine what went through his mind. He hadn’t seen the wife he knew and loved for way more than a month- I had become a different person. We had held out so much hope that the “old” me would return. He was noticeably angry and upset. Our drive into town coincided with the Wednesday of Holy Week. My children had created a 40 foot banner for my return! I thought I would be driving up to the house, triumphant, just in time for Easter. My own, personal, renewal and triumph. I had pictured this moment a thousand times. I hobbled out of the car, and gritted my teeth through hugs and some tears. The rest of that day is a blur. I was asked a hundred times how much better are you? Is it working? When can you do ___?

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My wonderful extended family, holding down the fort!

I awoke the next morning, Maundy Thursday, and called my doctor in Michigan. I told him not to count my experience as a success. It wasn’t working AT ALL, I had followed every instruction, perfectly, done everything they asked, and patience did not pay off. I was in more pain, and I had wasted a month of my life for nothing. He was alarmed and asked me to go get an x-ray, asap. Why? What’s the point now, I thought? James took me to an outpatient center that morning. By that evening we had the results- the lead the surgeon had placed on my nerve had migrated, immediately after the surgery. There’s only a 6% chance of that happening… so a 94% of success. I was in the 6%. I went to bed that night, feeling somewhat vindicated, but mostly hopeless. I awoke the morning of Good Friday 2017, feeling different than I ever have in my entire life.

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Wednesday of Holy Week 2017, right after I got out of the car.

The irony and importance of the date was not lost on me at all. In fact, I think that added to the pain. I had expected to return home- having beaten my circumstances, just in time for Easter. A rebirth! A new beginning, a new hope. Instead, I was more broken than ever. The morning of Good Friday, I felt pain the likes of which I have had never known before or since. It was a void in my soul. Physical pain, I knew well, but this new sensation was foreign to me. It was as if a limb had been amputated. I lost God- in my mind I had. I tried to speak to Him, and the words wouldn’t form in my mouth. I couldn’t feel God, at all. I can’t describe this adequately. I do not think that you need to physically “feel” connected to the Lord- like all warm and fuzzy all of the time. I knew that. But that day, I felt like I had lost my best friend, he had died and I would never see him again. I felt abandoned- an emptiness that was SO painful, it was actually worse than the physical agony. I had read that Mother Teresa also felt that way, for years. An absence. She pushed onward in her faith, but she described an absence of the Holy Spirit- or the perception of one, in her life. I was numb. James was numb. Exhausted. We had done everything “right” and nothing had gone according to plan.

If I had to pinpoint rock bottom, Good Friday 2017 would be it. There were many physically painful times, but that day, I felt pain in my soul. I literally had no idea what to do, how to go on living. Without God, what was the point? Oh, that day, that one day. I will never forget feeling so alone, while being surrounded by people who loved me. It would have been so easy to give in, to dwell in the darkness and wallow in self-pity at that point. The darkness was pulling me, I felt it. “Give up, He doesn’t care about you” was the voice I heard that day. I wanted to curse the Lord- full honesty here. I prayed and begged and went through SO much pain, for nothing??! I limped through Good Friday, and woke the next day, still lost. Easter morning, I woke up, and at first, I went through the motions. I forced a smile at breakfast, I tried to listen at church. There was still that nagging voice in my head, telling me to give up. I still felt a void- that’s the only way I can think of to describe it- a hole inside of me. Easter day, I started to push back- it was so hard. You would think, for a lifetime churchgoer, I could just pick myself back up and move on. I had wonderful support and love, but darkness is very tempting. It pulled HARD.

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Easter morning 2017

I had to make a choice- do I fight back? or give in? Slowly, not overnight, I found my voice again. I told God that I didn’t understand, but that I couldn’t bear to live without Him. Life without faith was worse than any physical pain I could endure. I needed God in my life. So, day by day, I trudged along limping honestly, literally and figuratively.  Some lessons in life are REALLY hard to learn- for me, trying to make sense of things is my hubris. I think if I can be logical and come up with a reason, then suffering will make sense. Ok- I admit right now, I have been so wrong. I will never, ever understand all suffering, maybe any at all. Follow that line of thinking to its conclusion- do the right things, say the right things, and you get the desired result? So, what, all of those people who continue to suffer, just didn’t have the right answers? No, of course not. This world doesn’t make sense to me, and I don’t think it is supposed to. It’s only on the other side- in the world of eternity where God exists, no past, present or future- he is everywhere, that pieces of a puzzle will fall into place.

In hindsight, I have the luxury of having my mind back! No haze of medications cloud my thoughts right now. I can appreciate the experience that I had during Lent 2017 in a fresh light. I spent so much time with my mother and my godmother, my Aunt Janet. I heard plenty of stories that I had never heard before about their lives. We prayed together, daily and I even had visitors! We had lived in that area of Michigan for James’s fellowship for one year. Dear, sweet women who I only knew briefly, all came to see me and encourage me. My family from Savannah took turns coming up to help my dad and James take care of 6 little children. I have no idea how clean my house was or what they ate, but you know what? The earth kept turning without me here, telling everyone to eat their vegetables and wear appropriate shoes. I witnessed love on such a scale, I am humbled and almost embarassed because I feel like an inadequate recipient. People from our church cooked meals for us, for a YEAR. I have one friend who brought us food every Tuesday for OVER A YEAR. It was, and is hard for me, to be on the receiving end of charity. None of us will ever be worthy on our own merit, of God’s mercy; accepting and truly needing SO much help during a difficult time taught me humility that otherwise, I don’t know that I would have ever possessed.

Last year, what was supposed to be my triumpant return, was the exact opposite. I arrived home more broken down and feeling a pull on my soul to give up my faith. Talk about kicking someone when they are down. It was the single darkest time of my life, Good Friday. Not by my own strength, but by God’s mercy, did he pull harder towards the light. I made a choice, to step out when I couldn’t see 6 inches in front of my face it was so dark. Choosing faith, and living in the light can be harder in times of great trial, but that’s when it’s the most important. Take that Darth Vader!

The epilogue to this story is that I had to go back to Michigan, lying flat in the car, surrounded by ice packs. I had yet another surgery, and woke up only to find out that the doctor took 10 tries to place the lead perfectly. (I have 10 scars to prove it) I had complications, and had to be admitted, after 9 hours in the PACU. My room wasn’t private, and my roomate had C. dif. I’m not kidding. Everyone wore hazmat suits but me. They gave her a bucket to go to the bathroom in, if she couldn’t make it to the toilet. The room smelled of excrement, and I was hooked to the bed with catheters and i.v. lines. I lay there in the dark, in more pain, crying, thinking “ok, seriously, the next time I say ‘things can’t get any worse’ someone just slap me!”. I eventually made it home, and the device never worked. After all of that effort, I never saw any relief. Because of what happened in my case, they now do EMG testing on both sensory and motor functions of the nerve while people are under anesthesia, and they place the lead in a different place to reduce the risk of migration. So, if stimwave works for anyone out there, you’re welcome! I got to be the guinea pig. Oh well!

One thought on “Hindsight is 20/20, or pretty close

  1. Jodie

    Amy, your story is one that I can relate to. I too found myself in such a dark place struggling with the pain of PN, and anxiety surrounding what had become of my, once busy, life. In reading your blog piece, it resonated inside me, your desperation and darkness. I’m glad that you seemed to have found the light again. I did too.
    Thanks for so eloquently sharing your thoughts and feelings and faith.

    Like

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