One year ago this week, I did my first photo shoot at a Farm Project vineyard. It was the Friday before Thanksgiving–a gorgeous crisp autumn day–and I had a wonderful time capturing many photos of the vineyard after harvest. Later that same day, Michael and I headed out for a weekend to spend time on a dairy farm. It was the first weekend away from our boys in several years, and as happy as we were about meeting the farm family and learning about their dairy operation, we were also excited about some time for ourselves. We were staying at a lovely bed and breakfast out and away from it all with beautiful scenery, horses and riding trails. Having time to ourselves—even a regular date night—is very hard to work in, so a weekend away seemed like a dream. It truly was a magical day. Our plan was to get up early, head to the farm, and have a fun day with the cows. We had no idea how much our lives would change that night.
Around 1:00 am, I started feeling very sick. I was shaky and nauseous, pacing around the room and constantly trembling until I couldn’t stand any longer and sat on the sofa. Forty-five minutes later, my whole body stiffened and I rolled onto the floor. I couldn’t get up or speak. Michael tried to help me up, but I was completely stiff and unable to move, to force my lips to move or make any sound but a moan. Inside I was panicking, thinking these were my last moments and I would never see my precious boys again. My body was growing increasingly rigid and I had no motor control. Michael called 911, and from the time of that call we had a 30 minute wait for the EMTs because we were so far out in the country and away from everything.
At some point during the wait my body relaxed somewhat and Michael moved me onto a sofa. I was able to force my mouth to move and say, “I love the boys.” It took me over a minute to force out those four words, but at least I had said something. Michael talked to me the whole time, but I struggled to form words, to communicate with him. My mind was racing, running a symptom checklist trying to figure out exactly what was happening to me. I thought maybe I’d had a stroke, but not a heart attack. Before I could talk again, my body stiffened and I lost all motor control once more. By the time the EMTs arrived and transported me to the hospital, I thought I might survive but began to wonder if I could be a vegetable for the rest of my life.
Episodes of my body stiffening, then relaxing went on for nearly five hours with little recovery period between them. I could think very clearly but could not move or speak. I could blink, so when Michael and the doctors asked me questions, I would blink once or twice to answer. The first hospital I was taken to had no answers about my condition, but the ER doctor knew I needed to go to another hospital — one with more resources and specialists with greater expertise. She arranged for another ambulance to move me back to Northern Virginia and into a hospital that would hopefully be more successful in diagnosing me. By then I was able to move and speak clearly, but I was physically drained from my experience.
Once admitted to the second hospital, I was placed in the stroke unit and ordered an MRI and EKG. Neither test provided an answer to what was wrong with me. I was discharged the next morning with no more understanding than I’d had the previous day. They theorized I may have suffered a possible TIA (mini-stroke) or maybe something else and said I needed to see a neurologist ASAP.
My experience had been terrifying and we knew we needed to get to the bottom of it right away, but it was Thanksgiving week and there aren’t many neurologists with office hours during that week. Fortunately we did find a very good neurologist who happened to be in the office that Monday and who worked me into his appointment schedule that day. We met and talked about what happened. He looked at my MRI and other scans, asked about my history and anything that might be relevant, including the migraines I’ve had and how odd they had been over the past year. He suggested the possibility of delayed onset epilepsy because of a serious concussion I sustained in high school—which I wrote off as unlikely—then he scheduled me for a 24-hour EEG.
If you’ve never had to endure a 24-hour EEG, it’s not a treat. Smelly glue and firmly attached electrodes were placed all over my head and wires ran to a small machine I had to carry around all day and sleep with at night. My head was wrapped like a mummy’s and the wires bundled in a sock down my back. It was itchy and uncomfortable, but the boys thought it was kind of cool. “Mommy, you look like a robot!” I thought for sure they would have many questions about it, but they seemed to take it all in stride. We had done our best to make light of the situation, telling them everything was fine and the doctor was doing some tests to help me with my headaches. I wasn’t ready to discuss the situation with them, mostly because I wanted to have more information, but also because I couldn’t talk about it without breaking down.
It was the day before Thanksgiving, late morning, and I was in the doctor’s office with a technician who was removing the wires, then scrubbing my scalp with a substance that would loosen the smelly glue. The smell of acetone was just about overwhelming. After about 45 minutes everything was finished and we headed for home. All I could think about was how good a shower was going to feel when I got there. The doctor called not long after we got home. He was already on vacation but wanted to get in touch right away to talk about the results of my EEG.
The shock of the diagnosis compounded the shock of the events. I could not believe it was genetic — that I had been born with it. I couldn’t remember having seizures as a child. The doctor theorized that I’d probably had absence seizures since childhood and just never knew it, and that some of the odd migraines I told him about about were actually partial seizures. Sometimes epilepsy symptoms increase or change as we age, and an increase in symptoms can also come with perimenopause.
I started medication the day before Thanksgiving, and I am so thankful for my friend Kristy who took us in for Thanksgiving dinner, because I certainly was not up to cooking. We all had a good time and our kids enjoyed playing together.
Over the month of December, we gradually increased the dose of my medication to a therapeutic level which would prevent seizures. I can’t think of a gentle way to put this because there was nothing gentle about it. It sucked. The medicine did not work well for me. I felt nauseous, my sense of taste and smell were completely off, I couldn’t stay awake, got dizzy, couldn’t think. I felt like I was in some crazy drug-induced fog much of the time and barely able to string a sentence together. I lost my desire for almost everything I normally ate because nothing tasted the way I knew it should. Food I had always loved had flavors foreign to me and unexpected textures. Bread and rice felt and tasted like sand; coffee and tea, my two favorite drinks, tasted awful. I could only tolerate a couple of plain vegetables and chicken with no spices or condiments. I couldn’t eat fruit, and could only drink milk and water. I couldn’t cook for my family or go to restaurants because the smell of food also made me nauseous. When my family ate dinner I had to go to another part of the house, shut the door and light a mildly fragrant candle to kill the food odors. I was getting only 400-600 calories a day and lost 25 pounds in four weeks. The weight loss was the only silver lining in the whole experience.
To say that this impacted my work is an understatement. It was a nightmare considering I am someone who earns a living with recipe development and food photography. And it had all started during the busiest, best blog time of the year in terms of traffic and revenue, leaving me unable to be around food, nor able to sit at the computer and formulate clear sentences. The medicine had killed my motivation as well as my vocabulary, as if I were losing brain cells. I had a deadline for a book I was contributing to, and I couldn’t even imagine cooking because the smell of food made me sick. The only way my blog survived that first month was from posting roundups of some of our favorite holiday foods. I set a theme for each post with a sentence or two at the beginning, then added photos and links. I considered asking a few friends to guest post during that month, but I was so frustrated by my feelings of helplessness. I hated to feel like I had to rely on yet another person for something else that I could not do.
The helpless feeling was the worst of it all. I couldn’t drive, couldn’t exercise out of sheer exhaustion and fear of injury due to medication side effects or a possible seizure, needed help with cooking and taking care of my family. It was as if my independence had been stripped away, and I couldn’t bear that thought. The only time I had ever come close to feeling that way was when I lived in Saudi Arabia and had all sorts of restrictions because I was a woman, and even that was easier because it was my choice to live and work there. I had no choice with this health situation. I was 45 years old and fearful of losing control over my life.
After three months of that nightmare and still having occasional seizures, the doctor agreed that increasing the dose was not a good idea and we decided to try another option. I was very worried about other medications that would cause weight gain. I’ve struggled with my weight for a couple years, so after losing those pounds in spite of the truly horrid circumstances, I was determined to not gain them back. There are only two other medications that work on my type of epilepsy, so I didn’t have options, but I told the doctor point blank, “If you put me on medicine that will make me gain weight, you might as well stick a toe tag on me.” No, I did not have a positive attitude at that point, especially since the alternative medicines had side effects that could be very severe. But I had to do something because the first medicine made me so sick and still did not fully control my seizures. There were no good choices, and yet I had to choose.
We started gradually reducing the dosage of one medication while increasing another. My doctor’s medical advice was, “You may feel funky for a while.” Yes, that in spades. I felt side effects from both medicines at the same time which is not an experience I would like to repeat. And of course there were those very serious life-threatening side effects to watch for during the first few weeks, which made us hyper vigilant. I would panic at the slightest sign of redness or rash on my skin.
It took six weeks to make the transition, and once I was completely off the first medication I felt so much better, like I was getting back to myself, but not completely. My sense of taste and smell wasn’t fully restored, and even now, several months later, I still have not gotten my taste back for Italian food, cooked tomatoes, breads, pasta, beer, wine, and pretty much anything with flour. Oh the irony of our abundant tomato and basil harvest this summer. I canned almost 40 quarts of tomatoes and can’t even enjoy any of it.
As I feared, the new medicine caused some weight gain even with the restricted diet. I’ve had to stick with a very low calorie, zero or low-grain eating plan and regular swimming just to keep from bloating up. I am not happy about that at all. But I can cook and I can exercise without fear. I have my brain and my creativity back, and I have pushed forward with my passion for photography.
I found solace in planting our spring garden, pulling weeds, and watching the blueberries and rhubarb we planted several years ago burst into life.
The hours I’ve spent photographing our garden, farms, and vineyards this year has been the best therapy. Fresh air, young calves and pregnant cows, horses, beautiful fresh strawberries, sweet juicy figs, grapes ready for harvest, pumpkin fields, and the people who tend all of these things have renewed my spirit.
So here we are, one year later, remembering that horrible night and its aftermath. It’s been a year of serious lows, of moving past the shock and anger and all the stages of grief to a place where I could accept it and take back my life from illness and medication.
This Thanksgiving is even more special for me — for us. We’ve come through a very difficult time, and though I can’t say I’m thankful for the illness, I am so thankful for the people in my life. I am thankful for Michael and my family whose love and caring helped get me through the dark times after the diagnosis; for friends who stuck by me, checked in to make sure we were doing ok, and let me tag along for grocery shopping; for the woman who saw my ad for a driver and referred me to a friend of hers that could help; for Michelle for not only taking over the driving for us but also her friendship and getting me out of the house for some girl time; for Kristy and our Trader Joe’s excursions and for keeping me laughing; for my longtime friend Evelyn who called me from Egypt to listen, talk, and give me a far-away shoulder to lean on; for the special friends I’ve made through blogging who offered ideas and support and listened to my occasional rants. I’m also thankful for the readers who continued to visit my blog even when I wasn’t able to post weekly and for the new readers who jumped in and stayed during this crazy ride.
I love you all.