It had been a long, hard year, with a lot of expensive medical bills that ate up most of my savings. My new food lifestyle also cost a pretty penny. I needed to start working, and I finally felt like I could actually do it. I got offered a silly job to film a small movie for one week in New Orleans (it was never actually released), and I knew I had to take it, but I was scared. I didn’t want a repeat of the Florida fiasco, but I knew I had to do this, not just for financial reasons but also because it was time to continue with my life. I still grappled with panic, but thought maybe I could bring somebody with me who understood and who would help me through. It’s always tricky to find food that is safe for me, and I couldn’t imagine what I would eat when on location in New Orleans. I needed help. My mother definitely understood the panic, and by this time, she had conquered her fear of flying. She was always ready to go on a trip, so she agreed to go with me.
Each morning, I went to the set, then I went back to the hotel. We’d do our best to make small meals in the hotel room from the one hot plate I brought with me. We made friends with the chef at the hotel where we stayed, and he did his best to serve me things I could eat. My mom and I made the best of this very new, scary situation, and we actually managed to have some fun together. Every day of work was a new battle I had won. It was all baby steps, but at least I was moving forward!
While I was there, I got a call about a new TV show that was going to be shot in New York City called Blue Bloods. It was a show about a family of cops living in New York City. Donny Wahlberg played one of the leads, and they wanted me to play the role of his partner. The show had already gone through two other partners in four episodes. My manager sent me the pilot episode to watch, so I could see what the show was all about. I would be the foil while he was at the office, but most of the show looked like it was about his family. I needed the money and the show looked good. It was shot in New York, too. But could I handle it?
I didn’t want to set myself back at all, and I knew what a full-time network drama required. My manager confirmed with the casting director that it was a supporting role and not a lead role. After being reassured that it was definitely part time, which was also reflected in what they were paying, and that the show was mostly centered around the family of cops, not around my character, I felt happy to agree to the job. It was a third of what I normally got paid for TV, but it was part time and I wanted to get out there and have a life again.
I was sent for a physical, which is normal when beginning any new project, for insurance reasons. Everyone was informed that I had celiac disease, and the doctor said I was fine to work. It was all coming together.
I was definitely a bit nervous, getting back to my old life with my newfound life partner, celiac disease, but I knew myself, and I knew that if I signed on to this job, I would give everything to make sure I did it, and did it well. It had been a little over a year since I’d acted, so stepping back on a set was scary. Even though I’d been on hundreds of sets before, this time, things felt different. This time, I had a diagnosis, and I knew what I needed to do. I needed to be prepared, take care of myself, and eat and sleep enough. I worried about being able to shop, prepare, and bring enough food for me on set. I worried that my brain fog might keep me from learning my lines. I wondered whether the cast and crew would be welcoming and understanding when I wouldn’t be joining them for lunch. But I had accepted who I was and where I was: a celiac on a TV show. I wasn’t trying to be the perfect “star” or be the lead in anything. I wasn’t trying to look for movie roles. I just wanted to do good work, feel well, and have some fun.
And it was fun. The wardrobe people were nice, and I explained my situation to the makeup artist—that I couldn’t have any gluten in my products. She said, no problem, she would get whatever I needed. I was given a dressing room and on the first day, I brought in my gluten-free food. Just as I was starting to unpack it, I heard a knock on the door. I opened it, and there was Donny. I immediately put my food down and went to shake his hand, but he grabbed me and hugged me with a loud and boisterous “What’s up, Jen?!”
I was so taken aback, not because of his friendliness, but because I had been so tightly shut down for so long while I was healing that the force of his friendly, funny energy blew me away at first. He reminded me that we had auditioned together years ago for something, and that he always knew we would work together eventually. The bond was immediate and we became fast friends. We had a blast together. I was still extremely cautious with my health, but I was so happy to be working again and surrounded by lovely people. I was enjoying the work so much that I didn’t even realize I worked five out of five days for that week, and all five days were long. I got through it, I remembered my lines without the brain fog getting in my way, and I felt a sense of triumph. I could work again! It didn’t feel like part time, though. I figured this was just a busy first week and that the schedule would slow down.
I figured wrong. That first season, out of about 120 filming days, Donny worked 100 to 110, I worked over 90, and the rest of the cast worked 40, including those who had signed on for full time. Working built my confidence in myself. I could still be a human. I could still function. It was good for me to get out of the house and be around people and interact and be a professional. I realized how much I’d isolated myself in the past year, even with my occasional attempts to get out and do things. I still wondered why I was contracted (and paid) for part time while I was working full time, and the hours and stress of the situation began to take their toll. I was exhausted, like everyone else towards the end of the season, but I was okay.
This was my life now: get up early to make myself food so I could get through the day because they had no food for me that was gluten-free (an apple here, a bag of potato chips—these weren’t about to cut it). Go to work, work all day, sometimes late into the night, come home, pass out, then get up in the morning and do it all over again. Soon, weekends disappeared—I would literally get into bed after work on Friday night, and I would not leave that bed until it was time to get up for work on Monday morning. The only thing I ever did was go out to stock up on the foods I needed, and bake. Even after an exhausting day at work, even if I was hurting, or had worked sometimes close to sixteen-hour days. I would come home, get into the kitchen, and bake for hours. If I could go into that kitchen and make a perfect muffin and eat it, it was as good as meditation to me. My baking skills were getting better and better. I would wake up in the middle of the night with ideas for recipes. It was something to focus on, other than how I was feeling—something that wasn’t work, but that was just for me. I loved to bake.
I wasn’t dating at the time—that would have meant going out and actually meeting someone, and I didn’t have the time or the energy for that. I wasn’t seeing the few friends I had left. It was all about work and keeping myself as healthy as possible. It was all I knew, and all I could manage. It was a very tiring year, but I was doing it.
But, as much as I loved it, the pace wasn’t sustainable under the circumstances. As the season wore on, it became clear that I was definitely a full-time player, but making part-time money. My managers and my agent went to the producers and laid it out: I was getting a third of what everybody else is getting, I was working my tail off, and we all believed this was part time—something had to give. Either they had to lighten my workload or pay me for the full-time job I was actually doing, so I could get the support I needed—an assistant to help out, someone to food shop, or a cook to help me prep meals, or food on the set that was safe to eat. They pointed out that I had never missed a day of work and had given them all my energy and everything I had. All I needed was to get the support to keep going and doing the job for them.
The producers were great and they understood, but their hands were tied. It was all up to the network and the head producer. The final verdict was: “We’ll figure it out next season.” This was upsetting to me because I’d been breaking my butt at the expense of my own health to help make a hit show—and yet they put the matter off for another year. The on-set producers, who became friends, said they would help with scheduling for the next year, to make it easier on me.
The second season, they managed to make sure I had at least a day or two off each week. They did their best, but between the long hours, the ADR (the re-recording of lines when there is noise over the original audio), and wardrobe fittings on my days off, it still felt like a full-time job to me. I appreciated their efforts tremendously, but I still felt that the situation had to change permanently. The back and forth with the network stressed me out in a major way because I felt like things were not going to be settled. I was giving them what they needed, so why couldn’t we work something out? At the same time, I was having a great time with this group. The crew was great, and so was the cast. The days were long but filled with laughter, and the fact that I was no longer fighting my situation was a huge relief. I wasn’t trying for anything bigger and better. I was just being, and although the work was exhausting, it was truly fulfilling. I figured I could just continue the way I was going, and wait until next season to cut back the schedule.
HAVING CELIAC DISEASE can feel like a full-time job all by itself. Take going to the market. It’s not happening in less than an hour because you have to read every label and look at every single thing you put in your cart, especially when you’re new at it. Add a full-time job on a television series and by the end of the second season, I was feeling truly overwhelmed.
I was still gluten-free, dairy-free, and soy-free. I was doing everything I was supposed to do. But I began to get worse. As we neared our hiatus in filming, the exhaustion was catching up to me in a way that I was finding more and more difficult to ignore. Then the yellow tinge returned to my skin, and the dark circles and puffiness around my eyes returned.
My agent and managers could see the physical decline in me, so when the second season ended, they went straight to the network. “Listen,” they said, “She’s definitely not part-time, this is not what we agreed to, she needs help here, or you need to cut back her schedule or pay her more or something.” They said no. No reduced hours, no raise.
What? Why? They had agreed to change things this year, but now, the answer was no.
Over the hiatus, things really took a turn for the worse. I started to get sinus infections again. I had to take prednisone and antibiotics—the worst things for me, but it was the only way to get me through the workday. Then a rash developed all over my body that blistered so severely, it damaged my skin. (I still have scars from it.) Then my hair started to fall out in patches. And then my eyelashes. First, they fell out here and there, and then in clumps, so all I had left were patches of lashes. It was horrific and I was beside myself. How could this be happening? I couldn’t understand it. I was doing everything right! I was taking care of myself as well as possible. I was sleeping and eating pure, gluten-free, dairy-free foods. I was cooking for myself and was engaged in life. How could I be having such an extreme relapse? It didn’t make sense to me. It was like the ultimate slap in the face, like the universe taunting me: “So, you think you’re going to get well now, do you? Take this!”
I started asking questions on the forums again, and searching everywhere for answers. Was I somehow “getting glutened” without realizing it, even though I was being so careful? Or was it something else, something completely new? I had accepted that my condition was frustrating, but I still wanted to do whatever I could do to gain some control over this autoimmune disease. Once again, for what seemed like the millionth time, I set out to find an answer. I went to Dr. Good, and he couldn’t understand why I wasn’t healing. He sent me to a doctor who leaned more towards natural medicine. He was a good doctor who really listened to me, but the fifty pills of herbs and supplements he prescribed for me were not happening. I know myself. I was not going to swallow fifty pills a day. And so I went to another doctor. And another. One thought I might have lupus. People with autoimmune disease are prone to developing another autoimmune condition, but no, the test came back negative. Another thought I had a thyroid problem. That must be why my hair was falling out. I got the test, but that came back negative, too. Ten different doctors in all, desperate to find out what the hell was wrong with me now, after doing everything right and trying so hard to live a healthful, careful, gluten-free life.
Then, I found Dr. Fratellone.
DR. FRATELLONE WAS trained as a cardiologist and an integrative physician, and was a celiac himself, so he had a different perspective on health than conventional doctors, and totally understood what celiac disease was all about. Finding him helped me understand my health in a completely new way. He sat with me for an hour, really listening to me in a way no other doctor ever had. Then he explained exactly what was happening to my body, and why I was still feeling sick.
First of all, he told me that my small intestine still hadn’t healed, and the damage to the gut had compromised the intestinal lining, punching holes in what was supposed to be impermeable. This is called “leaky gut,” and it’s a common problem with people who have an autoimmune disease (according to some doctors and researchers, gluten can damage the intestinal lining in all people, even those without an autoimmune disease). Once the intestinal lining is compromised, or “leaking,” proteins from food can get into the bloodstream, where they aren’t supposed to be. What happens then is that the body freaks out and starts trying to get rid of the “invaders,” and allergies to all kinds of formerly benign foods can develop. This, he said, is what was happening to me. He also explained that the stress I was going through at work was taking a major toll on my health. He said I had to respect my body. He was absolutely convinced that stress was playing an enormous part in my failure to heal. He suggested I needed to heed the warnings from my body, take up meditation again, and that I must resolve my situation at work at once. I could not be working that many hours, day after day, without the resources to get the support I needed.
He put me on a special shake specifically to combat inflammation. It contained glutathione and glutamine powder, which he said were crucial for healing the gut and repairing the leaks. Then he explained that even though I was taking a vitamin D supplement in liquid form, I was still deficient. He told me that vitamin D is manufactured in the small intestine, and because mine had sustained so much damage and was still trying to heal, my body wasn’t able to make enough or absorb enough. The remaining damage to my small intestine was making it very hard for me to absorb it, so I was still deficient. I’d never heard any of this information before.
Dr. Fratellone set me up to begin intravenous vitamin drips, to get the deficiencies corrected. He also did an allergy test, to determine which foods my body was reacting against by measuring the IGG antibodies in my bloodstream to particular foods, and, sure enough, every food I was now eating regularly was causing an allergic reaction—hard-boiled eggs, which I relied on while on set because they were an easy snack. Severe allergy! I still can’t touch eggs. Almond milk—I was drinking it every morning since I couldn’t have regular milk, putting it in my smoothies. I was now allergic. Avocado, zucchini, chicken, broccoli, bananas, chocolate, watermelon, and chicken, and so on and so on—I had IGG antibodies to all of them in my bloodstream. This is why I was suddenly doing so badly again. The very foods I thought were safe for me had become allergens because gluten had punched holes in my gut. Lovely.
Dr. Fratellone explained that once the inflammation and allergic responses had cooled, I could probably eat at least some of those foods again, but first I had to calm things down. He put me on quercetin supplements, to help calm the allergic response. He said I probably also had developed some toxicity from heavy metals. I was a heavy sushi eater because it was one of the few foods I could eat in a restaurant that didn’t contain gluten or dairy, but he told me to stop the sushi for a while, especially tuna, due to the mercury contamination. I had mercury fillings, and he said that in some patients he would recommend having them removed, but in my case, I was in too acute a state. Removing fillings releases some of the mercury gas, and that would be too dangerous for me right now.
Dr. Fratellone explained a whole new eating concept to me: the rotation diet.
The premise behind the rotation diet is to minimize exposure to any one food in sensitive bodies prone to developing allergic reactions. There is only one rule: Never eat any food more than once every four days. For example, if you have eggs for breakfast on a Monday, you don’t eat eggs again until Friday. If you have almond milk on a Tuesday, you don’t have it again until Friday. This not only gives your body a chance to process each food without getting overloaded, but it will probably force you to introduce more variety into your diet, which usually leads to more nutrients.
He also recommended I get some lymphatic drainage. He set me up with a woman who does acupuncture, lymphatic massage, and other cleansing techniques. She was a kind, caring, nurturing woman with a Caribbean accent, who looked at me with great concern. “You’re extremely toxic,” she said, gazing into my yellow eyes, fingering my thinning hair, and eyeing my obviously swollen face. She gave me a lymphatic massage, which I absolutely loved. This involves massaging the lymph nodes and manually increasing circulation to the lymphatic system through particular kinds of massage strokes, and it felt great on my swollen body. She also did acupuncture on me, which I found to be extremely painful, but which really seemed to help me feel better afterwards.
As I began this new path—IV vitamin drips, gut-repairing shakes for breakfast, quercetin supplements, the rotation diet, and lymphatic massages—I reconnected over Facebook with a friend of a friend I knew from four years ago. I hadn’t dated anyone or been with anyone for nearly three years, from the time my relationship ended after the failed pregnancy. Louis lived in London, but he came to visit me one weekend, and we realized we were both on the heels of some crazy years and were both looking for someone real to spend our lives with. As a new relationship developed, I suddenly felt pressure to pretend everything was okay. I could hear my mother’s voice: “Nobody wants to hear your problems.” I also knew from past experiences that I needed to be perfect and together and not cause waves in anybody else’s life. I told him I had celiac disease, but I left it at that. I didn’t fully explain, and I certainly didn’t let him see any of my problems.
Knowing about celiac disease and living it are two totally different things. Thankfully, Louis was in London most of the time, so I didn’t have to hide the truth unless he was visiting. When we spoke, I always made sure to sound like everything was okay. When he was in town, I usually met him somewhere other than my apartment. I often ate before I met him for dinner, I made sure to get enough sleep, and I determined to be a person who could handle a relationship, not to mention someone that someone else might actually want to have a relationship with. He was a lovely, understanding person, but I still didn’t want him to know the whole truth. Not yet. Who wants to hear, on the first few dates, “Hey, I really can’t go out to dinner ever, and if I do, I can’t eat most of what’s on the menu, and if I do, I’ll probably have to be carried out, or I’ll throw up on you, or I’ll be bedridden for days. Interested?” Yeah, what a catch I was.
The morning I broke out in a rash all over my body and began to swell like a burn victim, I couldn’t hide it. He was coming the next day from London to spend our first weekend together. He was already on the plane. I stared at myself miserably in the bathroom mirror. I looked like a leper. The rash was the worst on my legs. It was disgusting—a prickly rash with white bumps all over it, that honestly looked like chunks of cellulite with skin stretched over it. So attractive.
As if the rash wasn’t enough, I could also feel my nervous system taunting me. I was jittery and exhausted. I rushed off to the doctor to get some intravenous vitamins, hoping he could somehow make it all go away by the next day. He told me I was having an allergic reaction to something. He said it could get worse and I should come back tomorrow for another round of IV.
When Louis arrived, thankfully it was winter and it made sense for me to wear sweats. He was exhausted with jetlag, so we both happily passed out early. The next morning, I snuck out of bed, washed my inflamed body, and got dressed in a tent. Just as I was ready to sneak out to the doctor, he woke up and caught me. I made some excuse. “I’m having some kind of allergic reaction to…the body lotion I use. I need to go to the doctor really quickly, but I’ll be right back.”
But, being the guy he is, he insisted that he come with me. “I came to New York to be with you, and that means every minute.”
“Jesus,” I thought. “Is this guy for real?” I made light of the whole situation and my “little rash.” I told him it would only take a couple of minutes. I was terrified of letting him catch a glimpse of what was really going on—the years of suffering and anxiety and pain. Why would he want to be with somebody like that? When we got to the doctor’s office, I left Louis in the waiting room and went in to see Dr. Fratellone. He’d become a friend by this point and he knew that I had started to see someone I was really excited about. When I told him what I was up to, he gave me a look.
“Jennifer. If you really want to go forward with this person, he needs to see the whole package, and part of that package is this disease. It is what it is, and he needs to see that sometimes you get ill.”
I knew he was right, but I was afraid. What if he ran away from me? This disease had taken enough away from me. I didn’t want it to ruin something so potentially great. I knew he was right, but as he was putting in the IV, he said he was going to call my boyfriend in to see me and talk to me as the vitamins infused my shaky body.
Keep it light, keep it light, I kept saying to myself. But how was I going to keep it light with an IV drip in my arm? When he came into the back area, he was surprised to see me. He asked me what was wrong.
“Oh, you know,” I said breezily, “It’s because of the celiac disease I told you about. Sometimes it gets me and I have to slow down and these drips give me vitamins that I’m probably not getting. It’s really no big deal.” I gave him a big smile, just to put a punctuation mark on it.
But he could see I was a bit unnerved. I wasn’t a very good actress that day. He asked what was in the IV, and Dr. Fratellone told him it was vitamins. We all chatted and chuckled for a few seconds, and then he said, “So, doc, can I have one, too? If it’s all vitamins, wouldn’t it be okay for me?”
Dr. Fratellone gave me a sidelong glance as if to say, told ya so. “Are you serious?” he said.
“Absolutely,” Louis said.
And then he sat there with me with an IV in his arm. We were quiet for a moment because he knew this was more than I had been letting him know, but, kindly, he let the moment be. It was all I could do to stop the tears from flowing. I didn’t want to give him even one more reason to run in the other direction, but I was moved beyond belief. With that one gesture, he had done more for me than most people in my life ever had. He passed no judgment. He was just there for me, and it meant more to me than he could ever know. It was exactly what I needed.
AS THE HIATUS from the show was nearing an end and we were about a week away from filming the third season, I was in such bad shape that my managers called a meeting and made the case: The show had benefited from my work. I was giving them everything I had—all my energy, all my time, a full commitment, at a pay rate much less than I have ever taken, and I was paying the price. My health was becoming a problem because of the stress, but I had disclosed my condition from the start, and I had never missed a day of work. Bottom line: I needed help—an assistant, or someone to help with the dogs, or someone to cook for me. Something, anything!
“You can’t do this to her,” they said. “If you can’t give her more money, that’s fine. At this point, what we really need is for this job to be part time, the way we believed it was in the first place.” All the other cast members except Donny worked two to three days a week, so we knew it was possible. For me, it wasn’t about the money. It was more about me honoring my health. I was angry with myself that I wasn’t taking better care of myself, but I was spread so thin, I didn’t know how else to get through my days. On their schedule, I couldn’t do what I needed to do. The argument fell on deaf ears. I was in a contract, and that was that. Unfortunately, my contract didn’t say in certain terms that I was part time, even though that’s what we were told.
At this point in my life, I was used to my requests for help being ignored, but by this time, I had spent too many years being ignored and disregarded. I’d sat in front of too many doctors who didn’t hear me when I told them how ill I was. I worked my butt off for 20 years and I couldn’t bear it anymore. The stress of it all exacerbated the situation, and I felt awful. I went back to Dr. Fratellone, and he did some blood work. A week later, as the third season was already underway, the doctor called and said he needed to speak with me. He told me that my liver enzymes were through the roof, and that if I did not heed his warning, then the next thing I would see would be a problem with my kidneys. He demanded that I only work three days a week. He wrote a note stating his findings, and sent it to the powers that be. He told them, “Jennifer cannot keep going like this. She’s had a setback and the stress is making it worse. You need to do something because the next step for this girl is chemotherapy drugs. Her body is not healing, and it’s so bad that her kidneys will soon be involved. Doctor’s order: She cannot work more than two or three days a week until she gets healthier, and these cannot be eighteen-hour days. This reduced schedule is not a joke.”
The producers took this information to the network, on my behalf. The response was a suggestion that this was some kind of scheming on my part to get a raise. When my agent and lawyer got on a conference call with everyone, the comment that came back was:
“Well, she doesn’t look sick.”
Next, they requested my years-old biopsy results, to prove I really did have celiac disease. For me, that was the end. After all I’d done to be forthcoming, they still wanted to doubt me. At this point, people were still questioning me and my disease, as if I was lying. It’s one thing if I decide I need to hide my disease from a new boyfriend for awhile because I don’t want to burden him. It’s quite another thing to tell me that I’m not really ill, or that I was making it up, when it was all out on the table before the job even started. By this time, my celiac disease blog was widely read and very popular. I was always vocal about raising awareness for the disease, and I always brought the gluten-free muffins and other treats I baked at home onto the set for everyone to share. If this was all a lie, it certainly was an elaborate one.
After that, there was a lot of legal nonsense, but while this was going on, I kept showing up for work against doctor’s orders. One very warm day, when it was about 85 degrees on the set and I was in a wool suit, one of the producers, who was also a friend of mine, came up to me.
“You don’t look good,”
“I’m not good,” I said. They had me on a five-day schedule, even though the doctor had specifically told them it had to be no more than two or three. I went home that day feeling dehydrated, exhausted, and awful. The next day, I wasn’t scheduled to come in until a little bit later. I had an early morning doctor’s appointment to get my IV vitamin drip, and I could tell I was ill. I felt as though I had had gluten somewhere, somehow, although I didn’t know where or when and I didn’t know for sure. When I do get “glutened,” this is the kind of reaction I get. I can’t walk, my knees give out, and my blood pressure drops. Louis was visiting that week, and this was the first time he ever saw me this severely ill. I couldn’t hide it from him. I hoped it wouldn’t scare him away, but I needed help. He carried me to the car to go to the doctor and get my IV and blood work checked. At Dr. Fratellone’s office, my blood pressure and heart rate were both extremely low. He also suspected that somewhere, somehow I had ingested some gluten. He gave me the IV, but looked at me sternly.
“You can’t go in to work today,” he said. “Your blood pressure is too low.”
“I have no choice,” I said. I called the driver and told him to pick me up at the doctor’s office. He took me straight to the set. I slept in the car the whole way. The driver is also a friend, and when we got there, he woke me up.
“Jen, you don’t look good,” he said.
“I’m not good,” I said. In fact, I could barely talk. I was really bad. I stumbled out of the car and dropped to my knees. Everyone on the set saw it happen. My friend who was my makeup artist got me into her trailer and put me in her seat and put cold rags on my neck and head. I felt like I was going to pass out. I needed water. I tried to get up to get some and nearly fell to the floor again. She caught me and put me back in the seat. I had saltwater spray with me that I used when my blood pressure was low. It gave me a boost. I sprayed it in my mouth, but it didn’t seem to help. She called the doctor and he told her I had to get back there immediately. My friend who was the driver picked me up and put me back in the car and took me back to the doctor’s office, where I lay there for four or five hours, through seven IVs. That’s how much it took to get my blood pressure to go back up into a safe range.
During those seven hours, one of the producers showed up at the doctor’s office to see how I was doing. Then she took the doctor aside.
“How long is this going to take?” she said. “We need to get her back to the set.”
I understood her reaction—she was just doing her job, but Dr. Fratellone looked at her and said, “She’s not going back to the set today. I told you two weeks ago that she couldn’t work under these conditions, and you didn’t listen to me, and this is what happened.”
The next day, they reworked the schedule and I was at home resting. By the following day, I could have gone back to work, but they changed the schedule for the week to avoid any problems. From there, everything started to break down. My lawyer stated that per doctor’s order, if I didn’t have reduced hours, I couldn’t work. We were told that I was under contract and if I didn’t work the way they needed me to do the job, then I couldn’t work at all. After a few weeks of this back-and-forth, I was finally put on vacation leave, I was told, so they could figure out what to do next. Extended, unpaid leave. In my contract, I was pay or play, which means if they decided not to use me in an episode, they still had to pay me, or they had to let me go, so for those few weeks, we were at a standstill. Contractually, I was supposed to be getting paid. I understood they needed a job done, and that if it wasn’t getting done, I had to be let go, but I was not let go for a month and because of that, I was unable, legally, to take any other job.
In my blog, I often write about standing up for yourself with this disease and getting heard by doctors. But what about the rest of the world? I stopped blogging during this time, as I just didn’t know what to say about yet another hurdle regarding this disease. I didn’t even care about the money, but I thought I couldn’t in good conscience let this happen, so I spoke to my lawyer. My lawyer came back and said I didn’t have the funds to go up against such a huge organization. He told me that I was just one person, and I wasn’t going to make any difference in the situation by trying to sue. He said that it would cost me hundreds of thousands of dollars because they would keep it in court for years, and it wouldn’t be worth it. He didn’t realize it was not about the money anymore for me, it was about the principle, but I agreed to move on. I didn’t need any more stress in my life.
It was clear to me now: I needed to go in an entirely new direction with my life. I needed to take a giant step back and re-assess. That purpose I craved was now sitting in my lap, and I couldn’t waste any more of my energy on things that didn’t serve that purpose. I decided now was the time to do something—not just sit behind my computer, write on my blog, and research. Do something. And, for that, I’m grateful for the situation that unfolded.