A Story of Recovery:
Why stay abstinent with a terminal illness?
After a semi-successful bout on a commercial diet, I weighed 170 pounds. At 5 feet 3 ½ inches tall, I was far from slim, but considered myself acceptable. I was 47 years old. At a routine visit for my COPD (Chronic Obstructive Pulmonary Disease), my pulmonologist said, “You could do less damage to your body by gaining 100 pounds than you are doing by continuing to smoke.” I quit smoking, and with his “permission,” promptly gained 50 pounds. Then I developed breast cancer and had a lumpectomy. A few years later, I reached 236 pounds. In addition to being morbidly obese, I also developed type 2 diabetes, high cholesterol, fatty liver disease, an enlarged heart from high blood pressure, and stage 1b lung cancer. I had more doctors than friends.
After having a procedure for my lung cancer, the thoracic surgeon said, “You better hope this worked. I don’t feel good about doing anything else surgically because I don’t think you’ll make it through.” The oncologist said, “There is some slim chance I could give you chemotherapy, but with your liver the way it is, you won’t be able to process the poisons.” Gastric sleeve surgery was strongly suggested by my team of physicians.
As big as I was, I was on the cusp of not qualifying for the surgery. The bariatric doctor told me if I wanted insurance to cover it, I should not lose too much weight during the 6 months of mandatory nutrition classes leading up to the operation.
“Really, is that the case?” I ranted. “Good. I’m going to diet again, lose all this weight, and get out of this because I really don’t want this surgery!” I was highly motivated, yet I couldn’t diet successfully, nor lose the weight. I had to have the surgery.
A friend who already had the gastric surgery told me her experience coming home from the hospital. At that point, she was only allowed to consume liquid protein. She cooked all the baked goods in her house and watched her husband eat them. She couldn’t wait to come off the liquid and eat warm, mushy, comfort food. I thought to myself, “That doesn’t sound like she’s well. That sounds like me – sounds like addiction.”
One night at an Alanon meeting, I saw a friend whom I hadn’t seen in about a year. The deal with me was if I didn’t notice your size, then clearly you weren’t going to notice mine. I honestly did not see the 60 or 80 pounds she had lost. What I did notice about her was a certain peace and serenity.
“Where have you been?” I asked.
“FA, AWOL.” “What’s that?” “Come to a meeting some time.” Oh yeah, sure, I’ll get right on that, I thought. Are you kidding? Bu, her serenity – I’d like some of that, please!
The night before my gastric surgery, I went to my first FA meeting. Halfway through, during the 10-minute break, a few members came over to greet me. When I mentioned I was having gastric surgery the next day, I was asked if I had to go through with it. I wasn’t interested in reconsidering. I had been preparing for the surgery for many months and my mind was set. I really believed that the gastric surgery was the path my higher power wanted me to take. At the same time, I knew for sure that the path I was also supposed to be on was in the rooms of FA. But I didn’t want to do it yet. To celebrate our thirtieth anniversary, my wonderful husband had scheduled a 3-week trip to Italy. Taking the trip at the end of September would allow me to recover enough so that I would be able to eat at least a little local cuisine. I’d be able to really enjoy Italy. After that I would join FA.
Immediately following the gastric surgery, my blood sugar stabilized. I no longer needed insulin. Still, I wasn’t cured. Something inside of me knew I was eventually going to be in FA. I knew FA was key to my recovery, while I also knew the surgery was not. It occurred to me that if I was going to let someone cut out 85% of my stomach, then maybe I actually had an issue with food. A short time later, when I had to go from liquid protein to solid food, I got scared. I realized that if I was going to have to decide what to eat, how much and when, I was going to be in big trouble. I’d blow out my staples. I figured I would go to one more FA meeting and that when I came back from Italy everything would just somehow be ok.
That night at the FA meeting, the leader asked for sponsors with time available to stand. Nobody rocked my world. Good, good, I thought. Maybe I don’t have to ask anyone. Then this woman walked by and I heard an inner voice say, “Ask her.” I don’t want to ask her, I want to go to Italy. Again I heard, “Ask her.” I really didn’t think I wanted a sponsor. “Can you help me?” I asked. And suddenly it was out there.
My new sponsor hadn’t stood up as someone with time available. When I asked her to sponsor me, she willingly agreed. Because she was going to be out of town for a few days, she dutifully connected me with someone I could call each morning until she returned. However, my sponsor also suggested I stay on the liquid protein until she and I could start talking regularly and work out a food plan that I could tolerate, even though I had a gastric sleeve. What was remarkable is, given the first opportunity that I could put fork to face, I denied it and stayed an extra weekend on just liquids. That was unbelievable!
Even more remarkable was that it took only three months for me to go from five protein drinks a day, to three weighed and measured meals per day. With my sponsor’s guidance, I gradually eliminated the liquid protein and transitioned entirely to solid food. I have had no restrictions since. My gastric team had never seen anything like it! And, I grew spiritually. I picked up praying, not only before a meal, but also after, as a way of expressing my amazement and gratitude for the miracle of being able to finish all my food.
My husband and I went to Italy as planned. Because of the FA program, I remained abstinent. I called FA fellows because these “strangers” knew how to stay abstinent in a city where it seemed everyone was eating, drinking, and smoking. I called fellows in England because they were in the same time zone, and I called my sponsor. (Before we left I told my husband, I’d be calling the States for at least 15 minutes, daily. I asked him to get me a calling card. He raised a doubtful eyebrow, but obliged. I used it happily throughout our travels.) During that trip, and again back home, I realized how important it is not to make decisions on my own and that I cannot recover alone. Talking on the phone with other food addicts diverted my attention from food and helped me recognize my need for help. I reached out and soon others began calling me. The “contacts” in my cell phone accumulated very quickly. I became willing to be a part of this fellowship because I knew that my inability to stop eating addictively was bringing me closer and closer to death. I was dying and I wanted to live.
I am sure I was born a food addict, but I certainly wasn’t the first to invent this disease in my family. My mother was always between sizes, beating herself up for it, and vacillating between bingeing and starving herself. (I processed this as normal; it wasn’t until I came into FA that I realized otherwise.) My mother’s mother believed that “food is love” and “love is food,” but her message was grossly inconsistent. When I was 8-years-old, Grandma took me in the bathroom to show me how to use a toothbrush.
“You don’t have to show me that,” I said. “I know how to use a toothbrush.”
“Not the way I know how,” she replied. She said I’d feel better if I put it down my throat. She taught me how to be bulimic.
My father’s mother liked to gamble, and I suspect my grandfather was in AA. After attending my first Alanon meeting in 2009, I shared the Serenity Prayer with my dad. Casually he said, “That was my father’s favorite prayer.” I’d never known any Jewish guy who had the Serenity Prayer as his favorite!
They say oranges don’t fall from apple trees. I used alcohol at times, enjoyed the thrill of gambling, smoked tremendously, worked excessively, and of course, ate addictively. I took care of my family, but neglected to take care of myself. I depleted myself, and then replenished with food, which didn’t replenish me at all. I grew to be large and in charge! I sought therapy. My theory on most western medicine is that they’ve got two tools- a scalpel so they can cut it out, and a pen and a prescription pad so they can pill it out. The disease I have is physical, mental, and spiritual. It can’t be fixed by cutting it out, nor by prescribing it away. I always had a grateful heart, a sense I wasn’t alone, and believed in a power greater than myself, but I didn’t know until I came into FA, that I was worthy of asking for help. Since surrendering the food, I’ve gladly found out that I am welcome to ask anything, anytime and I no longer want or need to be in charge.
My 26-year-old daughter got married less than 7 months after I started FA. I was my right size, which was absolutely shocking! (There was no way I could have predicted that. My best calculations had me at no less than 145 pounds by March, but I had already dropped to 125 lbs.) I hadn’t seen my brother in 10 months. Just before the ceremony, he approached me and said, “Hi I’d like to introduce myself. My name is Phil and I’m Jen’s brother…” I reached out to shake his hand and said, “Yes I know who you are. I’ve known you for about 50 years.” It was great, just great! Imagine, my own brother not recognizing me! (No question, that day my daughter was the only one who “one-upped me.” She looked beautiful!)
My son, my older child, was quite unwell. He struggled his whole life with mental illness. He was not at my daughter’s wedding. He was, instead, in jail, as a few days prior, he had tried to strangle his girlfriend. (I can’t believe I stayed abstinent through that!) It’s hard for me to give you a diagnosis of his mental disease, but in no way does it differ significantly from my own. It had something to do with fear, doubt, and insecurity. Ultimately he used drugs to cope, and I used food. Through recovery, I humbly came to realize that I am an addict just like my son. The only differences between us are the substances we chose and that I lived long enough to realize I valued my life. I became willing to be willing. My last hope for helping him was to perhaps be a power of example. If he could see that I could do something with my addiction, then maybe he could see that something could be done with his. But it wasn’t meant to be. One year and one day after my first FA meeting, my 28-year old son was found dead from an overdose of heroin.
My son died and I didn’t eat over it. My recovery still had to come first. During his Shiva (the gathering at my home in the days after his funeral), nothing made sense except weighing and measuring my food. That was the only thing that I could do anything about. Writing down what I was going to eat for the day and precisely measuring my exact quantities was very comforting.
Losing my son has fundamentally changed me. Many more seconds of my days are spent seeking the will of a power greater than myself. Despite my son’s death, I keep going. I know that every day I stay abstinent is possibly another day that someone else can, too. Maybe my power of example didn’t help him, but maybe it will help somebody else’s son or daughter. If, by telling my story of recovery, and the story of my son and me, it helps one person to put the fork down, he will not have died in vain, and my efforts in this program won’t be in vain. If I can do that tiny bit of service, the effort is all worth it.
Through AWOL (A Way Of Life, a study of the 12 steps), I was able to make amends (and hence make a relationship) with my son’s girlfriend, the mother of my two grandchildren. I’ve learned that just because I might be 51% in the right, doesn’t mean the other person owes me anything. If just 1% of my side of the street is unclean, even if I don’t realize why, then I get great benefit by truly changing, sharing that I’ve changed, and sincerely saying I was wrong and I’m sorry. That kind of wisdom I could not invent.
My higher power recently shared some light-hearted wisdom with me, too. I had two and a half pounds of excess skin removed from my arms and legs. (Surgeons love me now because there’s no fat, just skin!) Before the surgery, I asked my husband to assemble our hospital bed. (We’ve had one in our home for 10 years because we provided palliative care to both my parents and my grandmother.) My husband put the bed together, but didn’t put up the side rails. In quiet time, I asked G-d to help me say something without hurting my husband’s feelings. I was so appreciative of what he’d already done, but worried that these side rails would not be there for me. Please help me find some words so that I can ask for this, I prayed. And I heard, “I’ve got this.” It’s good you’ve got this, I’m really glad, but could you let me intervene directly? I heard, “I’ve got this.” When I was through with quiet time, my husband said, “Do you think I should put the side rails up?” (I was shocked! I was also a little mad that I hadn’t asked for world peace!) I casually said, “Oh, golly, I don’t know. Do what you think. I’m not sure.”
A few days later, I had the plastic surgery. When I got home, the side rails were not on the bed! G-d, what’s up with this? You said you’ve got this. I don’t understand. And I heard it again, “I’ve got this.” You’ve got this? Hmmph.” I got in the bed. When I needed to get out again, I instinctively went for the side rails and realized I had no strength in my arms. I called to my husband for help; he is 6 ft 3 and strong. He heroically put his arms around my back. If the side rails had been there he wouldn’t have been able to scoop in nearly so easily to lift me up. I laughed at myself and heard, “I’ve got this.”
Later that month, I was unfortunately, taken by surprise. I unexpectedly learned that my lung cancer was no longer in remission. After talking with my doctor, I filled with tears. Initially, they were not tears of sadness; they were tears of hope. With abstinence and a 110-pound weight loss, I was in excellent health. No more hypertension, high cholesterol, elevated blood sugar, or fatty liver disease. The doctors could try to help. It was safe to open me up, possibly remove my lung, and try chemotherapy. Because of recovery, I had options.
Gratitude for my recovery has never waned. However, I quickly lost my treatment options. The surgery intended to possibly remove the infected lung revealed that my cancer had already grown to stage 4. My cancer is inoperable, not contained enough to do radiation, and there is no known chemotherapy protocol. I am now in the middle of a clinical trial, which may perhaps extend my life a bit.
Having two diseases, both food addiction and cancer, has made dealing with the medical community a little frustrating. I’ve had to say, “You guys get to be in charge of the chemo and all that poison stuff you put into my system, but you don’t get to be in charge of my food.” Once they said, “You should have more weight, just in case.” I told them I am at my optimal fighting weight, because I am. It just gets proven over and over that staying abstinent and in recovery is exactly what I need to do. People are getting used to the idea that they can make all the recommendations they want, but I will probably implement almost none of them. I certainly won’t implement any ideas without checking in with my Higher Power and talking with my sponsor or other experienced food addicts in recovery. Not making decisions alone is critical to what keeps me abstinent.
I have also learned that my recovery rests on a willingness to accept help. So many have rallied around my family and me. I am tremendously grateful for all the love, prayers and support. Nonetheless, it is incredibly hard for me to believe that others really do get an intense sense of purpose providing service to me. I’m told I am special, but I’m not THAT special! I think to myself, You mean these beautiful, thin, gracious, put together, positive people, are insanely kind and generous, too? How is this even possible! Yes, through the grace of G-d. I simply must trust that many hands make for easy work – and, of course, G-d’s got this. I still pinch myself as I wonder how someone like me found herself in the midst of such wondrous souls!
I was recently asked, “Why stay abstinent? You have a terminal illness. Why not just go out and enjoy yourself?” Here are my thoughts: With maybe only a few months left to live, do I want to waste even a microsecond of my time wondering what’s in the refrigerator? Or do I want to be here, among the living? Do I want to be with my husband, daughter, and grandchildren? Do I want to be knitting a scarf, thinking about people I love, making them each a hug? I would really much rather be doing all of that than having my head in the food. I can’t think of why I’d want to waste another moment that way.
I want to stay on this side of eternity as long as I can. I love that I am finally fully present. FA has taught me to forgive myself for past mistakes. FA has given me the freedom to be ok where I’m at, and with where I’m going. Every day I walk my walk knowing that I’ll soon be on the other side, and that wherever that is, I’ll be with my son. In sum, I don’t know what happens next, but whatever happens, I know for sure, G-d’s got this.