This week, my kids had a field trip with their homeschool group, Classical Conversations, to The Rock Ranch. It is just about their favorite place ever. It’s a working farm, with historical tours, reenactments, artifacts, and best of all- plenty of places for free play. They took advantage of a giant bubble in the ground- ok, I know I have phrased that completely incorrectly, but to me that’s what it looks like! They took their shoes off and bounced their heads off. Then, there was Tiny Town- a miniature version of an old west town complete with a jail, courthouse, church, school, and stores. That is the highlight of the trip! They chase each other around, and drag their friends to the jail. Oh- the laughter! I could have listen to it for hours.
On the way home, Aidan and Rose were talking about how this year compared with other years they had been- the weather, the food, the activities. It hit me that I have no memories of those adventures. None. I don’t even remember the days that they went. I don’t remember them coming home to tell me about it, nor the other experiences they shared with dear friends. While everyone else’s lives moved on, I was in a bubble for almost two years. My bedroom was the bubble most of the time, dark, and I was unable to talk or read or even listen most days. The sustained level of pain separated me from rational thought and conversation. I existed somewhere between reality and a dream world. I do remember it feeling endless- days turned into weeks, into months. One day exactly like the next with no progress for a very, very long time.
I told my children that I felt like I had just stepped out of a time machine. A little over two years ago, I stepped out of this reality, and I just emerged. I’ve been doing more and more with the kids, but this week I noticed the passage of time so much more than before. Here I am, driving the kids hours in the car for a full day of activity. I didn’t drive a car for over a year. It was almost as though the last couple of years were a dream. I went from 2016, to now. They have all of these memories that I am not a part of. I’m not bitter about that, rather I feel an immense gratitude that they were so loved and cared for. I get to wake up every day, like it’s Christmas morning. EVERY DAY. I get to drive! I get to eat! I get to walk around! Never gets old.
I’m by no means perfect- my health is an ongoing challenge. A couple of days ago, James and I had an emergency trip to see a neurologist for me. We used to have those nail-biting, jump in the car, desperate wild goose chase for answers, outings together all of the time. A lot of those long drives and longer appointments were dead ends. This one, however, was not. Another piece of the puzzle is being put back together. It’s amazing just how much can fall apart, like dominoes toppling one after the other. I’m playing catch-up, and most days I feel great about the progress but other days (like this week) I look at where I want to be and I get discouraged. When will I get there? There is no magic time machine to jump in, and fast forward. Getting to the destination sure would be nice, but this journey has made me endlessly grateful for each teeny, tiny blessing.
While my recovery was gradual- almost imperceptible for months, the major events that changed my life are pretty easy to identify. I passed another milestone this week- the two year anniversary of my surgery at Emory. It was on November 9th, a Wednesday morning right after the election. The nurse came in at 4:30am to wake me up and tell me that Donald Trump had won. I was so surprised I almost fell out of the bed. They wheeled me down to pre-op in the still-dark hours of dawn. I was blissfully unaware of how difficult the surgery would be, and I think my surgeon was as well. He estimated 1.5 hours, and it took 7. After waking up, there were some complications in the PACU, and I felt real, raw fear. I was free-wheeling (ok, literally because I had enough ketamine in me to kill a horse), and didn’t know where I would land. For the first time in my life, I considered the real possibility that everything would not be ok. The uncertainty was the worst part- moving forward after that with no clear path or guarantees. I know I’m not alone in that experience. While mine was health related, other people I know have faced total uncertainty with jobs, sick children, marriages crumbling, and finances changing. I think human beings have a natural tendency to seek control and structure of their own destinies. To be forced to let go of all control and realize it is a harsh lesson to learn. Control is, I’ve learned, all an illusion of course! Even when we think we are the navigators of all things in our lives, we really aren’t.
Two years ago, I woke up on November 9th and fully realized that I was not in control at all. The reality had been there all along, I just didn’t see it clearly. Now, I wake up every day and let life happen. Am I still a planner? By nature, yes. Do I cling to ideals, bitterly and relentlessly, not wanting to let go of “my” plans? Nope. Not any more. While I was in my “bubble” I changed, evolved and I’m still growing. A time machine would have saved me so much heartache, but then I wouldn’t see life through rose colored glasses like I do today. La vie en rose.
Eli the Wildman turns 4 this weekend. His birth story, if I had to rank them, would be my favorite. It’s not my fave because he was the easiest, or fastest. Oh no. He was my biggest, by over a pound, and he got stuck! I don’t know- it was just memorable from start to finish. I found out I was expecting him when James and I were on our first getaway in 10 years, in St. Thomas. We were about the board the plane and I felt sick to my stomach. I wasn’t even 4 weeks pregnant at the time. Yeah. The morning sickness started at 3.5 weeks with Eli! I had hyperemesis gravidarum with him, and it is impossible to adequately describe what that feels like. If you’ve been through it, you get it. It’s a 24/7 experience- and nothing helps. I had a 2-week reprieve and it felt like a miracle to me. We went to Savannah in the summer of 2014 and I got to enjoy my family and the coast. Upon returning home, the 24/7 sickness returned. There wasn’t one day that I didn’t throw up for the rest of the pregnancy. I remember praying and worrying that he would be small and sickly, because I couldn’t eat well or hold down vitamins. By the end, I was consuming maybe 500 calories a day? And that consisted of sipping Gatorade and half of a banana. My legs and arms were thin, but oh boy, did my belly grow!
I was the biggest I had ever been during a pregnancy, and the weight kept climbing on the scale. It defied science or reason- I ate less and less and got bigger and bigger. Oh Eli, you were Superman from the get-go! He kicked harder than any of the other babies, and I thought of him as a fighter. I was suffering, but he was fighting to thrive. I was sitting in church on Palm Sunday that year, and they read the Passion Gospel. The priest got to the part about when Jesus was crying out from the cross, and the bystanders thought he was calling out to Elijah. It hit me then- that was his name. Elijah the prophet was a tough guy! He was brave and a fighter. My Eli picked his name that day, and it stuck.
The labor and delivery of my fourth child lasted 30 minutes, start to finish. It was kind of like being struck by lightening- it was so powerful and fast! I planned early on with Eli to have a natural childbirth, because if it went quickly I didn’t want to even think about anesthesia or worry about getting it in time. I figured it was just best to count on not having time, and plan accordingly! A week before he was born, I got sick of our carpet upstairs in the kids’ bedrooms, so sick of it that it just HAD to get torn up RIGHT THEN. We HAD to have wood floors because the carpet was FILTHY. In fairness, it did have stains on it from a really bad bout with a stomach bug. I had scrubbed on my hands and knees one too many times and at 9 months pregnant, those brown, shag carpets were toast.
The flooring was finished at 6 pm on a Friday, and Monday morning a cleaning crew came to vacuum all of the dust and debris left behind. We went to Classical Conversations and I brought my big yoga ball to sit on. I don’t actually use it for yoga, it served as a comfortable place to sit during the pregnancies. I’m sure I freaked out a few people that morning! My lower back ached, and I had a gut feeling he was coming that day. I calmly left the kids at CC and drove myself to the ob/gyn’s office. I spoke to a midwife and explained that I was feeling achey, and I thought he was coming that day. Bless that woman’s heart, she believed me and said “Ok Amy, come to the hospital when you are ready. We will admit you and let you have a room to stay in until he comes. There’s no rush.” I went back to my kids’ homeschool group and told them I was having the baby later- there were some cheers, and hugs and I left amid smiles and excitement.
I called James from the car on the way home with the kids, and told him that Eli was coming later that day. I think he said something along the lines of “Oh man, that’s not convenient, I just fixed the work schedule.” In my pregnancy/labor hormone blur I didn’t react well to that, and the rest of the conversation sounded like an exercise in how to NOT communicate with your spouse. When we cleared things up and he understood I wasn’t being induced, I didn’t pick Monday just to thwart his work schedule rotation and that we had a baby boy who wanted to meet us SOON, I was able to take a few deep breaths and spend a few hours with the kids at home. I wasn’t in labor- at all. It was just a feeling, all day. My mom was up here staying with us, and when James got home from work, the excitement was palpable. The kids were jumping around, knowing that something big was happening, but not quite understanding how much life was about to change.
James and I went to the hospital like old pros. He had a trash bag full of my favorite pillows, and I carried a paper grocery bag with supplies for a post-birth meal that we had picked up at Publix. No kidding- we showed up with fried chicken for James. We must have looked like the Beverly Hillbillies to the nurses. I walked up to labor and delivery, and was shown to my room very calmly. We brought our groceries and pillows and linens, and made ourselves at home! I wasn’t having any contractions-none. The nurse came in to introduce herself and we chatted about how the midwife agreed to admit me for the evening, so I could get some sleep. The midwife had said she agreed that Eli would be along later that evening. The midwife came in as we were getting acquainted and said that they needed the room since the floor was filling up. I had to get Pitocin or have my water broken. Yeah, that wasn’t going to happen with a drug-free birth! Yikes, they are hard enough already without heaping more fuel onto the fire. I declined, but the midwife was insistent. She needed me to have that baby, asap. Well, I can be insistent too when the occasion calls for it. I told her I would be discharged before I would let anyone touch me. I was so sure that he was coming that night, I was willing to drive across the street and wait at the hotel.
I don’t think that anyone had ever said that before- or since. It sounded like a lot of work for everyone- paperwork, which I know people hate! I wasn’t going to give an inch. Childbirth is tough and I didn’t want anyone messing with me. My babies come fast, and when he decided it was the right time, he’d be there in a timely manner. There was no way I’d labor for 12 hours and I knew that. It was just a little tough to convince everyone else of my certainty! Usually I’m not that inflexible- must have been a little bit of Eli’s personality shining through. I wanted my little guy to choose when he got there- I had my heart set on that, and James was in total agreement. The nurse saw that I got a little upset, when I found out that I was on the “clock.” If I didn’t have progress by 10pm, I would be discharged. It was 9:30pm. The nurse suggested that I go for a short walk, and she would check on me later.
Sweet James held down the fort, with our chicken, fresh fruit, tunes, and pillows! Baha. I went for a walk around L&D. I walked to the window of the nursery where you can see the babies. I prayed. I blocked everything else out, and I spoke from the heart. I told God that I had said that I was ready before, but that I knew I hadn’t been. NOW, in that moment, I was ready. I said “Please Lord, I’m ready now. You can send him.” I walked right back to the room, and sat down on my big, bouncy yoga ball. I rested my head on my chest and felt the first contraction. That was it. The midwife came to kick me out, and James held up his hand to silence the incomers. It was 9:45pm. He told them the contractions were 2-3 minutes apart. I made it under the gun, by 15 minutes. Eli was born around 11pm, I think? You know it all gets blurry there at the end! He came before midnight, on October 6th, just like I said he would. I think I could write 10,000 words on each child’s birth. Eli’s is especially bright in my memory, I’m not sure why. Maybe it’s because I was so prayerful and aware of time that evening? Each minute seems like a freeze frame in my mind when I think back. The moment he was born, the entire room yelled “WHOA!!!!!” in unison. Then I heard, “how big was your biggest baby?!” I told them, and the midwife said “HE’S GOING TO BE THE BIGGEST!!!”. Oh my gosh. I lost track of reality and time after he made an entrance. At that point, I made eye contact with someone in scrubs and demanded pain medication, asap. Laughing as I remember that. Natural birth, medicated recovery!
I felt like I had given birth to a baby elephant. I vaguely heard James screaming excitedly “Amy…learned about this in med school…Mighty Mouse…muscles…protein…disorder…he’s got huge biceps…”. Ok, it’s all really blurry after the meds were delivered! Eli was my biggest baby, by over a pound. He was 9 lbs 7 oz, and he was a week early. His head was in the 99%, and the hardest part of delivery was the fact that he was short! Plenty of babies are heavy, but he was heavy and only like 18.5 inches? At most? So he was a giant ball of muscle with fluffy blonde hair. Oh Eli. He was an exquisitely beautiful newborn, because he looked like a round 3 month old boy. He didn’t end up having that Mighty Mouse disorder thing, but they did run a couple of extra tests. I had been SO sick, so thin, and he was a He-man mini-beast. He looked like a wee body builder.
That night, there aren’t any pictures of me after I delivered my behemoth of a son. There are pictures of him! I was exhausted, and happy. And I have never felt that connected to my body, God and another human being before. I have prayed thousands and thousands of hours over my life, and that is the only time that I could sense an answer immediately. My timing actually matched God’s timing! Realistically, I’m running late or too early for some request or guidance. That night, October 6, 2014, I was 100% certain that my prayer would be answered at the moment that I asked. Eli and I were ready to meet each other, and never once did James flinch when I told him of my certainty. That night, he knew too. Eli- it had to be you, wonderful, beautiful you!
I’ve had so many stories, thoughts and experiences that I wanted to share, but our laptop was on the fritz. I’ve tried to get the kids to be more tech savvy and losing Google Chrome was the result of them having more computer time! I have no idea where it went, or why it doesn’t work anymore. I’ll figure that out later! I wrote something a while back, in the midst of a season of change. I’m still in that season. I feel like, for two years, I’ve been redefining who I am and what my role is every single day. I’m trying to find my footing so to speak, and it’s a lot harder than I thought it would be. Trials change you. You can’t walk through fire without getting burned, and I did. Badly. But the wounds healed slllooooowly. Veeeeeery slowly. The change was imperceptible from day to day. The only time I realized it was when I looked back. Where was I a few months ago? Where am I now? It wasn’t a giant boom, I didn’t wake up one day and shout “I’m healed!” What a cool story that would have been, right? No, it was gradual, and it’s still happening. I’m a work in progress.
This is what I wrote back in May:
A lot has happened around here over the last few months! I keep telling myself I will write when I feel better and have the spare time. I’ve been putting off making phone calls to make vacation plans for the summer, and procrastinating about seeing a doctor whom I like a great deal- but I want to feel even better when he sees me again. Sometimes I have a very good reason for putting off plans or items on a to-do list, but frequently it’s an overall attitude of “when my life is perfect, then I will do it!” (whatever “it” is). I think that part of that mindset stems from fear- fear that has been so deeply imbedded in my soul for so long, it’s hard to break free from it completely. I always hold back some- will I get too tired? Will I make pain worse? Will I commit to something and then disappoint loved ones? The past two years have been traumatic for me, and I can’t deny that they have left an indelible mark in my mind. How will I choose to use this experience? These memories?
The past few months have been a leap of faith for me, and a process of letting go of fear even more. I had been on nerve pain medication (Lyrica or Neurontin) as well as pain medication (fentanyl, oxycodone, etc.) for a year and a half. I tried over half a dozen other medications as well, and suffered through every awful side effect that came in tiny print, in the little booklet from the pharmacist. My body lost all muscle, appetite, I lost a third of my body weight, and my hair thinned a lot. I always knew that the medications were temporary, and I was very hard on myself for taking anything for pain. I carried a lot of guilt over that. My dear friend Kathleen told me at the beginning, “Amy, you can worry about pain, or medication. Pick one, not both.” So, I picked pain and took the meds that my kind, conservative pain management doctor said would help.
The timeline to come off of everything was all my idea. Once we FINALLY found the right combo of interventional procedures like nerve blocks and injections, I was SO ready to be done with the meds that had allowed me to have some sanity in the midst of great pain. I cannot put into words just how awful that part has been! Fentanyl withdrawal is a special kind of torture. That was last year. The past three months I stopped the last of the nerve pain meds and oral pain medication. I even stopped motrin, because of nausea all of the time. I still had chronic pain every day when I stopped taking meds, so I think of it as a leap of faith- faith that everything would be ok, and I would be strong enough to handle life with some pain. After the first two months passed, my nervous system calmed down a lot. There’s a long, technical explanation for that, that I understand, but I won’t explain fully, since it might bore everyone!
I finally have an appetite! I would literally lie in my bed, curled in a ball, and think of all of the foods that I would eat one day, when the nausea was gone. Krispy Kreme topped the list- every time! I did research, James did, my parents did- everyone was so supportive about this next phase of trying to get my overall health back. Not gonna lie- it’s been brutal. B-R-U-T-A-L. I read that the hardest part of stopping any substance that the body is used to, is the mental battle. People use the substance as a crutch of some sort. I know how blessed I am to say that I never had that battle. At all. I have experienced every physical symptom of tolerance and withdrawal, but zero mental symptoms. I give God 100% of the credit there. Everyone has struggles in life, and I don’t think that I am better than anyone who did have to struggle with addiction.
While I am SO glad that this particular struggle is behind me, I am grateful to have gone through it. Yes, I actually said that. I have a deeper understanding of people who have addictions, and who are afraid to live their lives without a crutch. I am less judgmental- I never realized that I was before! Oh, my heart goes out to people who have to suffer through the physical symptoms that I did, AND fight a mental battle as well. If I could wrap my arms around someone suffering right now, I would do it. One of my favorite docs told me that I didn’t have the cravings or miss the meds because I didn’t let them become part of my identity. They, along with many, many interventional procedures, were a means to an end and not who I am.
Every day, I have some symptom- something that reminds me that I’m not perfectly well. Like the thorn in Paul’s side, it’s always there. I put off doing a lot of things for the past few months, because at first, I was dealing with withdrawal and increased pain while my nerves adjusted. Then, I felt weak because I hadn’t eaten well or exercised for years. Yep, that would sideline just about anyone. Daily, I started to obsess over small improvements and mark my existence and my success by how my body felt or looked. I realized last week (yeah, it took me that long!) that I had made physical well-being an “idol” in my life. I don’t think that wanting to feel healthy and strong is bad, not at all. However, obsessing over it and thinking that life will “begin” when everything is perfect- that is wrong. I failed to appreciate the progress I had made, because I was always looking on the horizon for something better. Anything can become an idol, and frequently, it’s something that appears to be good and just. Who doesn’t want to feel good? Ok, another question- who has perfect health? Hmm… Silence.
No one has perfect health, and I’m not sure why I kept thinking that it was an attainable goal. These mortal bodies are just that- fallible, fragile, and will not last forever. If I set my sights on things above, our Lord’s steadfast love, and I search for contentment in my soul, then anything that comes my way in life won’t knock me down. Like a strong wave crashing onto the beach- did you ever walk out into the surf at the beach as a child, and let the waves hit you? Sometimes they can knock you down, but usually, if you know just when to jump, they break and you are still standing. When you are lying in bed at night, after a day at the beach, sometimes you still have the sensation of waves hitting you…but you are snug in bed, and not being rocked by the ocean anymore. The waves have left their mark.
I looked at James the other day and told him I was just going to embrace whatever came my way- good or bad, but I didn’t want to wait anymore to enjoy things. I can lie beside little Lana and admire her profile and her little dimpled cheeks, even if I’m dizzy or tired. I can laugh, hard, even if I’m sore. You’ve heard the phrase “progress over perfection”? I lost sight of that. I am incredibly grateful for the progress that I have made. I will focus on that, and I’m not going to wait to celebrate anything.
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!
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.
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.
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.
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 ___?
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.
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.
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!
The “before” picture. After Lana was born, we had professional pictures taken. I had no intention of being in them, but she wouldn’t stop crying so the photog told me to jump in. I’m SO glad that I did! Hence the ponytail:)
I was contacted recently by a journalist in New York City. She asked if she could interview me for a story on pudendal neuralgia. I knew that would mean opening old wounds, bearing my soul for the general public, and going over humiliation after humiliation for anyone to stumble on. I have been brought so low, so many times, I’m almost immune to it now- almost. I’ve discussed my private parts a hundred times- at least, suffered treatments that were as painful as the injury it self, been shamed for taking medication as directed, and told there was no “cure” for my neuropathy. Through it all, my sweet James stood by my side, and my parents worked so hard to keep our household from falling apart.
The morning of my surgery. Blissfully ignorant. Low risk, thought I would wake up in about an hour, good to go.
I agreed to the interview, knowing that everything that I said wouldn’t make it into print, gory details are the most interesting to read, and that it would definitely be one more humiliation to add to my long list. Truth is, I wanted to share because ever since the beginning, I kept saying to myself “if I ever feel well enough, I want to be a patient advocate. I want to help other people.” Not everyone has a James, and not everyone has parents, a sister, friends, neighbors, and a church family like I do. This experience would have ended very differently had I been alone. There was a woman in a support group that I joined for a while, who killed herself earlier last year. Her story isn’t that unusual unfortunately. Chronic pain is isolating. I know several people whose marriages dissolved because of health struggles. Friendships change and people feel so alone. I am so incredibly fortunate to have the world’s best friends. I don’t see them as often, but they have visited me here at home and while I was in the hospital. I have had meals delivered for a year and a half (not every night of course, but regularly).
I felt like it was my responsibility to share some, so that someone reading the article, wouldn’t feel so alone. Maybe, one medical student would randomly see the article and think, “hmm… maybe I should look into pain management, and chronic pelvic pain.” It’s poorly understood and studied- there are plenty of opportunities to find patients I can assure you! Every person with PN doesn’t have all of the same symptoms. Some of the symptoms described in the article apply to me, and some do not.
I could write for days about the spiritual journey that this has been. I will write about faith regularly. It is part of my daily life, my stream of consciousness, my conversations throughout the day, and my decision making process. At the beginning, everything felt like a bad dream. Surely, this isn’t for real? I will wake up? This horror will pass? I actually thought- I have had my “quota” of suffering for the year. You see, before my surgery, I had a difficult pregnancy. I suffered from hyperemesis gravidarum, and migraines that were so severe, I was treated by a neurologist the entire time, and hospitalized a few times. I was bedridden from the nausea and headache pain- it was blinding. I thought, I have suffered so much lately! That is ENOUGH, and this new fresh h-e-l-l has to pass, soon, right? My thoughts also were along the lines of “I’m a ‘good’ person, not an ax murderer, I have 6 kids to take care of, I’m young, this can’t be real. I have to get better! This sort of thing can’t just ruin my life- I don’t believe it.”
Oh Amy. I knew the folly of my train of thought, but I couldn’t stop the freight train of anger and justifying my conclusions to God. He had to be wrong, it had to be a mistake. If I prayed the “right” way, said the right things, the pain would pass, and I could have my old life back! Wrong, wrong, wrong. Through MUCH prayer- I mean constant, soul searching, scripture searching, and just plain crying…I knew deep down that our Lord isn’t a magic genie in a bottle. You don’t say the right words and He grants you your wish. It doesn’t matter how nice you are, or how many kids you have, no one is immune to suffering. To think for one second that anyone has quota that can be met…is ridiculous, and complete arrogance on my part. Suffering doesn’t only happen to the “bad” guys. There are so many people around the world who know pain, what made me so special that I should be immune?
This was taken before one of the several procedures in Michigan, where I lived for a month. I tried a new type of neuromodulator that ultimately failed. I was forcing a smile, because we were sending the picture to my kids. I didn’t want them to know how scared I was.
God never guaranteed anyone an easy life. HE is enough, that’s sort of the whole point. I can read that over and over, but unless I have lived it- everything else is gone, and all I’m left with is faith, I didn’t internalize it. This suffering, even in the extreme, is temporary. There were so many times that I didn’t pray to live, I prayed that the Lord would let me come home sooner- right then. I couldn’t see around the pain in the moment, couldn’t think five minutes in advance. I begged him to let me go. He, obviously, said “no my child, you are stronger than you think, hang in there.” I know what a dark valley is- one with no light, no directions, just the knowledge that I am supposed to trust. I am supposed to put one foot in front of the other and keep going in the dark. If I do that, trust blindly, I will see more clearly than I ever have before in my life- but not on my time, on His.
I’m not going to link to the article- it’s live, and being well read! I’d rather my kids not read some of those vocab words just yet:)
My grace is sufficient for you (2 Corinthians 12:9)
Yesterday, my new niece was born! My little sister, Katie, had her second child. She has a little boy, and yesterday, she had a little girl- they are calling her Stella. I didn’t know if I would be able to see her in the hospital, or when I would get to meet the baby. I did my usual and didn’t promise anything, because I never know how I will feel in advance. I don’t have a lot of good days, but lately I had had a couple of better ones (it’s all relative!). This little girl had been prayed for and hoped for, for a long time! I knew yesterday morning that there was nothing short of a tornado, that could keep me away.
I called and let my sweet, brave sister know that I would be able to come see her! It was raining and sleeting some, and the hospital was about 40 minutes away. That’s farther than I have driven in at least a year. Well, there’s nothing in the world I love more than newborns, so I had some incentive!
Here we are!!!! My hair turned to frizz in the rain, but that is a genuinely elated smile! I savored her soft, fuzzy hair, warm little weight in my arms, and her gentle inhale and exhale. I cannot have any more children, but that just means that I get to love on other people’s babies even more! Katie looked beautiful and so relaxed.
I called James during the day, and pulled the car over. We facetimed and I was in tears. He immediately asked what was wrong. I said, “nothing, I just drove a car!”. Pretty simple, but the pure joy of it brought me to tears. I had to stop and thank God, right there on the side of the road. Again, and again I said prayers of thanks. Not that long ago (ok, even some last week) I didn’t know if I would ever feel well enough to drive myself around. I never took big things for granted, like my loving family, my health, and the roof over my head. It was the little tiny things- like driving a car, or being able to say “yes I will be there”- those simple, small things, I used to take for granted. Now I don’t.
When I got home last night, I told James that when I was standing on the maternity floor, waiting for them to open the door that led to the hallway with patient rooms…I got a familiar feeling. It’s the same feeling I get when I enter some churches and chapels- one of awe. I feel God. It blasts me in the face when I walk onto the hospital hallway- all of those new little souls, fresh and wonderful, each one of them. The world has been waiting to meet them for approximately nine months. Each hospital room has one, maybe two, lives that were meant to be from the beginning of time. They are precious, and yesterday, I got to appreciate that.
During times of great suffering, it is easy to feel lost and overwhelmed. Uncertain. Doubting yourself, your beliefs- everything around you starts to look different. It’s like Alice in Wonderland, stepping through the looking glass. Life looks completely different. What is your due north? If you had a compass, where would it point? I believe in God, and I turned to prayer and the Bible. I would read some passages over and over, and in my haze of pain and grief at what I had lost, I couldn’t make sense of the words. Try as I might, it was as if it was written in a different language. I didn’t understand verses and promises that I knew by heart!
One day, a year ago, my aunt and uncle visited from Savannah. My Aunt Nancy brought me a book, that she said her mother and grandmother had had as well. She said that she had been praying for me, and that afternoon, we formed a circle and all prayed together. I was housebound for a long time, so having visitors meant the world to me. People who loved me, even in my pajamas, looking like I’d been hit by a bus!
After they left, I started reading. It is a daily devotional unlike anything I had ever seen before. It is called Streams in the Desert, and it was written in the 1920s by L.B. Cowman, who was a missionary. Her husband became very ill, and they had to return to the United States from their job abroad. She watched him suffer through his illness, and pass away. She wrote from a position of great personal pain and loss, but discovered a fountain that sustained her, and she shared it with the world. It became one of the best selling devotionals of all time.
This book became part of my toolbox, that spoke to my heart and soul. It is particularly useful for people who are experiencing life in the trenches- difficulties, loss, grief, and mourning. I love it and still read it. Please give Streams in the Desert a look!