When God chooses not to heal: A tale of gratitude and relinquished control

Disclaimer: High emotional content below, but I tried to throw in some raw self- deprecation to help lighten the load for those readers who persevere and make it past the first few paragraphs. Yeah, it’s a bit long, but not like NCIS long (Where are we now, season 85?). I love nothing if not a thorough and deeply personal backstory and my writing often reflects my desire to bare my soul in connecting with others.

This has been an emotional summer. I warred within myself on whether I wanted to write this post, and then whether I should wait until the emotions settled before putting my fingers to the keys. But I am learning so dearly the value of shared stories and experiences and the hope and comfort they can provide to both the teller and receiver. If I can encourage and support even one fellow earth-dweller with my words, how can I withhold them? So here goes: a little less jokes, a little more harsh reality with some silver lining of eternal hope.

I have some mildly scary health issues. Which may surprise some of my more casual acquaintances, since this is not a disease one can see from the outside. When I was a preteen, I took a nap one afternoon to prepare for a girls sleepover with peers from my parents’ church. I loved sleepovers and anytime someone invited me over I was super stoked, since it wasn’t a certainty that I WOULD be invited. I was socially awkward as a child (still am in some ways) although I was very socially enthusiastic ( let’s just call it that because that makes it sound better than it was). I have it on good authority that I often packed an overnight bag to take to church on the off chance I'd be chosen to sleep over with a friend such was my desire to be included and fear of missing out. Anywho, my mother woke me from my nap, and I walked across the hall to go to the restroom and get ready for the party. Then everything went dark and my life changed forever.

I don’t remember much about what followed, but I do recall vaguely my mom yelling my father’s name hysterically before I completely lost consciousness altogether. Needless to say, I missed the party and flash forward some days and tests later, I was diagnosed with epilepsy. Fortunately (fortunately, FORTUNATELY) I live in a time where there are medicines and tests and treatments (and no one thinks I’m demon possessed), and we found a routine that worked for me. Unlike many who suffer from frequent epileptic episodes, mine were circumstantial and preventable over comparatively long periods of time. As an adult, I’m still not sure what is causing the episodes, however we have observed that I tend to have seizures in times of some combination of high stress, low sleep, and irregular consumption of prescribed medication. I lived a relatively normal adolescence after this, switched medicines a few times, and found one with seemingly less side effects than its predecessors.

Then I ventured to college. This part of the tale paints an embarrassing picture of my practical intelligence and character as a young adult, but here goes. So, now that I was a grown up and the proud owner of all wisdom and freedom, I decided it would be a GREAT IDEA to just, you know, take my meds when I felt like it, stay up late with my friends, drink lots of caffeinated sodas….basically all the things that we previously guessed triggered a seizure for me. Because I was young and invincible, despite all the overwhelming evidence to the contrary. And free, did I mention free? The medicine (like many they prescribe for seizure) can make you sleepy and/or lethargic. Many also are prescribed as anti-depressants, so they have the potential to alter one’s moods. I decided I didn’t care for the drowsiness and relatively mild ‘downer’ effects of the medicine, and that I could control my body and make it ‘behave’. I also abhorred having to be dependent on some substance to be ‘normal’, which may have been a motivating factor as well. At the time, I was in an Honors Program and on Academic scholarship so one would think I should have known better, but I was such a selfish fool. Studies show that the decision making part of your brain does not fully develop until 25. So I’m going to play that card to save what face I can at this point.

Also, I was mildly addicted to the social opportunities around me, and coming from a place where I felt ‘uninvited’ as a middle and high-schooler, the fresh start socially that college afforded me was intoxicating. I was nearly incapable of refusing an appealing invitation, even if it was at 11pm or midnight. Gosh darn it, someone wanted me around so I was going! Oh, bless me. To my shame, I also did not consider how shocking it would be for RAs, roommates, and hall-mates to witness a seizure unprepared and have to care for me. I didn’t consider how much it would hurt my parents and family who loved me and wanted me healthy. I didn’t really realize (although my mother definitely told me) that a seizure could kill me. So I carried on as if I was fine. To those who cared for me during this time and any college seizures, I apologize for my foolishness and selfishness and thank you for your kindness. You know who you are and you were angels straight from the Lord. I am not always sure I believe in guardian angles but I am very tempted when I reflect on these years.

Flash forward a few years, I wise up and accept the reality of my condition and take my drugs more consistently though resignedly. I become mostly episode-free and everyone is content. I get another degree, I get married, and now I’m bound and determined to be a mother by 30. I knew next to nothing about very young babies so I did not immediately understand the risks for me to care for a young child. I did however research the drugs and consult my doctors about the medicine and conception and nursing and all that. They advised me to go medicine-free if at all possible to prevent birth defects. Well, birth defects were not part of the picture I painted of my future children, so YES let’s try to go off the medicine. And to the glory, the GLORY of God I did. I weaned myself off of drugs completely, made lifestyle changes, and anticipated 3-6 months of trying to conceive, if at all since many epileptics can’t conceive due to other underlying health issues. By His mercy (and possibly sense of humor), I was pregnant within 6 weeks.

My poor wonderful mother, however did anticipate the difficulty a newborn’s sleep schedule could have on my condition and my pregnancy announcement struck fear in her soul, and probably not enough into mine. I hope she got enough sleep worrying about me and my babies- I don’t deserve her. To the Glory, THE GLORY, of God I conceived, delivered and exclusively nursed my daughter for 11 months, and my son for 10 months all medicine-free. This is nothing short of a MIRACLE, since my daughter woke 3-4 times (YES I’M SERIOUS) a NIGHT until she was 11 months old, my son wakes 2-3 times still most nights. I could have decided the risks were too great and had my husband do formula at night, but we were on a tight budget, and I was determined to “naturally parent” my kids as much as possible, personal health be da##ed. We do cloth diapers, whole baby foods, the whole shebang, so formula wasn’t really part of my ‘motherhood vision’. And somehow God, my husband, and I made it through three years seizure-free off the medicines, and I give Him ALL THE PRAISES. We were so thankful and so hopeful that I had finally outgrown this disease from my adolescence and we could officially move on to a new normal with these little blessings.

But, life happened. Some weeks ago, I got up to pump milk and get ready for work and I fell hard. Fortunately, the damage was relatively minor, as I was not home alone or holding a child, and I was well cared for. BUT I did bang up my face pretty badly, and still retain some bruises at the time of this writing. Once the shock and hung-over feeling wore off, I was DEVASTATED. I was so disappointed that I was still "sick", and grieved that my overwhelming desire to care for my children naturally and on demand, had caused me so much harm. I was ashamed, humiliated, and defeated every time I looked in the mirror and saw my swollen nose and large bruises. I will spare you the picture, but my nose looked like the chick from the Avatar movie it was so swollen and the bruising was a vivid array of colors and still persists some weeks later. Thankfully, nothing was broken and I bounced back for the most part in a few days physically.

Emotionally, I am still healing in many ways. I was too embarrassed to go to church until the bruising went down, and went to work not from bravery, but because I wanted to save my vacation days for something more awesome and fun than hiding my “seizure face”. I dragged my defeated heart to the doctor, had some tests, and I will be going back on medicine, monitoring my baby for allergic reactions, and night-weaning/introducing formula at night. All things I HATE and do not fit in my vision of how I wish to live my best life. But it’s not really my life, is it? It’s God’s. As is my health, my purpose, and my joy.

But, despair not. While, at this time, God has not chosen to remove my earthly affliction completely, He is still the Great Healer and Restorer of all things lost. I wrote this long tale, to remind myself and others of some truths that are oh so liberating when written on the heart. God has taught me so much more about the human condition and the state of my own fallen nature from my struggle with epilepsy than I may have learned if I’d been always in good health. I have a very human tendency to pat myself on my back when things are going well, even if I give God lip-service my heart is not always in line. But back to those truths and promises unfiltered:

1. God is good. All the time. Even when life isn’t good, God is.

2. God is the great Healer and Restorer. But His timing and plans are not our plans.

3. God’s ways are not our ways. He seeks to bring about HIS Glory, not ours.

4. If I could plan it all and do it all, I wouldn’t need God. And OH I DO need Him.

5. One day, even if it’s in my next life, I won’t have epilepsy, because HE MAKES ALL THINGS NEW.

I promise He can heal you in ways you never imagined, though it may not look like the healing you ask for. I promise He can give you life abundant. I promise He sees your hurts and cares for you. He is a Good Father who abundantly cares for His children.

Love,

Charis