Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.



The Power of Decency

January 10, 1987…the date that altered my life forever. I was 23 years old,  had been raped, beaten, and had things done to me that I’d never heard of before.  I’d never had ‘normal’ sex before… After six hours of this torture (as it was termed by the newspaper writer at the trial) I finally was able to escape when the man who did those things to me passed out in my bed.  Before then, he was within inches of me along with one of my large kitchen knives.  I had to wait until it was safe to make the attempt to get away. Even when he had to use the bathroom, he had me get down on my hands and knees, and traced the knife along my spine with one hand until he was done.

I’d pounded on the downstairs neighbors’ door wearing a bath towel.  I had met them the day before (having moved to that complex 10 days earlier).  It was January in central Texas, and I was barefoot in a bath towel.  My face was swelling from being beaten in the head, my lip was bleeding where my teeth had gone through it, and I was bleeding from the force of the wine cooler bottle that he also used to repeatedly rape me (with it’s torn foil label on the neck of the bottle).  And unseen trauma from the force of ‘him’.  I was terrified he was going to catch me before the neighbor answered the door, and hadn’t even thought that they might not be home.  Fortunately, late on that particular Saturday morning,  Mrs. Neighbor was baking muffins. She answered the door with a muffin tin fresh out of the oven, an oven mitt on her hand.  She just sort of looked at me for a second, as if to try and make sense of why this 23-year old was standing in front of her in a towel.  I tried to be calm as I said “I was just raped. He’s still upstairs. Can I use your phone to call 911?”.

She got rid of the muffins, and grabbed me- pulling me into the apartment and closing the door. Mr. Neighbor then came out of the spare room, and saw me.  They both got me to the phone, and stood by as I called 911, and told the 911 operator the situation.  Mrs. Neighbor then went and got me a pair of underwear (she was about 5-foot nothin’, and much smaller than I was, but she wanted to give me some modesty), one of her robes that was quite small, and some slippers…she was also a mom, and treated me as a mom would.  The ensemble was complete; I was in a small robe that required the bath towel to fill in the gaping front, small undies, and slippers about two sizes smaller than I wore. I was so thankful to be covered.  Mrs. Neighbor told the police ,when they told her those items had just become evidence, that she wasn’t worried about her stuff. She wanted me to have something to help cover me up after what had happened.  That proper Jewish mama wasn’t sending anybody out naked.  *Thank you, Mrs. Neighbor, wherever you are*

The first police officer arrived fairly quickly and went up to my apartment. I’d left the door unlocked when I escaped, so he just walked inside.  What he hadn’t expected was to be beaten up by the rapist as he tried to handcuff him in my bed before he fully awakened.  The sound of his body being slammed around my apartment as I listened from downstairs was disturbing. One bookshelf was knocked over, and various items were crashing to the floor. Finally, the front door slammed, and he hollered down to Mr. Neighbor (who was listening from the doorway of his apartment- where I was) to call for backup.  Poor cop was a rookie, not expecting to get pummeled.  He ended up sitting on the pavement in front of the stairs leading to my apartment. He ended up with some minor injuries, and a major lesson.

Mrs. Neighbor called 911 again, and explained the situation. There were more officers en route, but they were having trouble finding the exact apartment on the large complex grounds.  Shortly, however, there were officers and police cars all over the parking lot.  Soon after that media trucks arrived, including all network TV stations. They made short work of setting up their cameras.

The backup officers went upstairs, and began the process of apprehending the man who violated me. There were more sounds of struggling, and officers in front of my apartment had their guns drawn, aimed at the balcony. Neighbors had started gathering to check out the commotion. At that time, I’d begun ‘shutting down’.  I had been in survival mode for so many hours, and hadn’t been able to let my guard down at all. When I finally could, shock set in fairly quickly, and while I was still aware of my surroundings and what was going on, I was more into my thoughts than what was going on around me. I was sitting in a rocking chair in the Neighbor’s living room, somewhat oblivious to anything but my thoughts, and the occasional glimpse out the window at the gathering crowd.  I never heard the gunshots upstairs, though Mr. Neighbor did.

By then, an ambulance had arrived for me, and the EMTs had started checking my vital signs, and assessing the busted lip and visible bruise that was blooming on my jaw. The other injuries would have to wait for a physician at the ER.  I had torn uterine ligaments, and various abrasions and lacerations from the foil on the wine cooler bottle.  A hospital helicopter was landing to take the rapist to the hospital. He had been shot in the groin, and was losing a fair amount of blood. From what I later heard, he was moving towards the officer, and not a ‘still target’; the officer that shot him later apologized profusely for not killing him.  I was kept inside the Neighbor’s apartment until ‘he’ was loaded into the helicopter,  and gone from the premises.

The EMTs were going to bring a stretcher in to take me to the ambulance, but I asked them to let me walk.  There had been enough drama, and the TV stations were still filming.  I was assured that they wouldn’t film me (rules about ‘victims’).  I still wanted to walk out, and not be buried under blankets on a stretcher. For some reason, I had to prove I wasn’t completely damaged, filming or not.  I didn’t want to look like I’d been destroyed.  I had to show I was stronger than what he had done to me. Those weren’t conscious thoughts at the time, but I knew I didn’t want to look ‘that bad’.

On the way out, cameras were still mounted on tripods, or in the hands of those filming, aimed in the general direction of the sidewalk. I walked past all of them, and looked at them. One relatively young female photographer made direct eye contact, and then did something that made a huge difference on that horrible day.  She aimed her camera at the ground, and bowed her head as I walked by that group of cameras.  She was offering me a sign of respect after I’d been completely dismantled in regards to dignity and simple human decency.   I wish I knew what TV station she was from so I could thank her (I’ve tried writing to all of them over the years), and let her know that that gesture was something I’ve never forgotten. That act of decency was, and is, greatly appreciated. It took her 2 seconds to do, but it’s lasted a lifetime for me.  That act of decency is one of the most healing things I’ve ever experienced.  It was the beginning of becoming a survivor, and not staying a victim.  While I had my ups and downs as I worked through what happened during the rape, that reporter/photographer was the beginning of shedding the ‘victim’ label. There aren’t enough thanks for something that powerful.

Starving At 35,000 Feet

I’d been put on a plane in San Antonio en route to Los Angeles, via Houston (ascend x 2 and descend x 2…no direct flight).  I don’t like to fly, and had taken a Benadryl to get me past the jitters. I’d flown many times with no problems, aside from that time coming back from Hawaii when the plane dropped a few thousand feet and blew out windows in buildings below- but I was 9 years old, and clueless. Otherwise, I’d never had any mayhem with flights other than delays. I was already in bad shape physically, and every time the pressure changed in the plane, it felt like the plane was nosediving. Nice. Just great.  I was already ambivalent about going to eating disorder treatment, and now the plane was going to crash.  It had been a great day all around. Oy… someone just shoot me now, but please pick out a slenderizing casket.

While I knew I needed help, I was scared to death.  Looking back at the photo taken on admission to the treatment center, I looked like I’d already died, but hadn’t had the sense to go lie down.  I was very pale, and my eyes were barely open (though I remember I’d tried to look perky. Fail. ).  Now I was on a plane, alone, and thinking I’d made a huge mistake. I’d been given an ultimatum at a formal intervention: no help means no job.  Maybe I should just figure out a way to get back home, and get a different job. I was a registered nurse; it took about 12 minutes to get a job on a bad day where I lived.  But, maybe I should get some help. I knew I was falling apart.  I’d been diagnosed with anorexia in my late teens ( the criteria used at the time based it on many things including a percentage of weight lost from original weight- which I prefer, as waiting until someone is skeletal delays help for a lot of people who are still clinically very ill, but not skinny ‘enough’; they die anyway).  I was still overweight, but had lost around one hundred pounds in about a year and a half; fifty of that in the previous three months.  I was confused. But I knew deep down that I was in trouble.  I was still scared.

In between the episodes of thinking the plane was going down, I tried to keep calm.  Since I was half dead anyway, that wasn’t really that hard, but I was still in a minor panic.  I knew that any eating disorder treatment included eating…big bummer.  I was 32 years old.  I’d been in some sort of eating disorder treatment on and off for 14 years.  I’d had some sort of eating abnormalities from the time I was six years old, and had food restricted unnecessarily. That led to hoarding food in my room that I’d get with babysitting money, because I was hungry.  I wasn’t a fat kid. I was told I needed to lose weight by my mom all the time. Looking back at old photos, there was nothing wrong with my weight.

I knew how this treatment stuff worked, and while strapped to that doomed airplane seat, I decided I had to eat in order to get home if I didn’t die in a fireball when the plane crashed. That’s how it works.  Once I got home, I could do what I wanted to do, but in the meantime, I had no way to get home (no cash for another ticket). I knew that the plan wasn’t for me to do a round trip in one day, and not get help.  I was stuck.

The ‘nosediving’ feeling happened about every 20 minutes or so, from what I recall.  It was often enough to be disturbing.  Nobody around me seemed to be writing out their last wills and testaments, sooooo….. it must be me. That helped a little bit. My blood pressure was probably sub-viable, so that didn’t help, and the Benadryl would have made that worse, but there was no way I was getting on a plane to have my life turned upside-down without something to chill me out.  I was a mess.  I’d also come off of working a 16-hour double shift with only about 3 hours of sleep since the morning before.  I was exhausted, mentally and physically.

But, I knew that when I got to that treatment center (where I’d sent a patient from the facility I worked at just 24 hours earlier- great, I’d be seeing one of my patients…. more joy…) I’d have to eat. When the perky flight attendant started handing out box lunches, I panicked (per usual), and then looked into the box.  There was a sandwich (OK- maybe I could pick that apart), some chips (not a snowball’s chance in a volcano for those), and a mini Snicker’s bar (I wanted that SO badly…but that was a really ‘bad’ food).  *sigh*  I had to make an effort.

The sandwich seemed the least horrifying. It didn’t have any sloppy dressings or spreads on it, and it was easy enough to peel off the cheese. That little packet of mayonnaise could go spread itself; no way I was eating that.  But I didn’t want to appear totally deranged to the complete strangers I’d never see again, so I left the thing intact. I figured out the calorie and fat content, and figured that in the past 36 hours, I’d had little more than that, so may survive it.  And, I told myself just to try acting normal for one stupid sandwich…pretty soon, I’d have someone setting a tray of stuff in front of me, and I’d be expected to finish it. Gotta get my teeth wet, and just do it.  So, I took a bite.  That was already kinda gross, since I didn’t like food touching my lips- it felt weird, and I preferred to extract things with my teeth from a fork. No utensils in sight, so I had to buck up and just get on with it.

Now, ‘normal’ people will think this is all completely nuts. (So did my co-workers, and that’s why I was fighting with a sandwich 5+ miles above the earth’s surface).  To someone with an eating disorder, I was making huge steps even before I  had to !  Nobody on that plane cared if I ate the sandwich, chips, or even the box (well, OK- maybe gnawing on thin cardboard would have drawn some stares).  It was just me and the sandwich.  And, the beginning of getting better.

My brain had been living on fumes for months, and it showed to those around me. In hindsight, I can see where I was really bonkers when it came to food.  I could still do my job, and pay the bills, but in regards to food, I was more than a little goofy.  ‘Fumes’ don’t make someone all that insightful. ‘Fumes’ make nutty stuff sound reasonable.  ‘Fumes’ keep the disordered thinking going strong, and any glimpses of reality really hard to grasp.  I knew I’d have to eat.  In some way, I think I felt some sense of control in taking those first few bites of ‘random’ food on my own with nobody breathing down my neck, or checking to see what I’d eaten.  I needed to get my head in the game of getting better.  At least I still had that much clicking in my noggin.

It probably took about 45 minutes to eat that 4 inch sandwich (on some sort of sub-roll). Bite-chew-gag-swallow-repeat.   It wasn’t anything I would have picked out by a long shot, but I got through it and it didn’t kill me. It was the first ‘whole’ anything I’d eaten for weeks, especially without my trusty laxatives to zip it on through my guts.

The plane also didn’t go down in flames.  Life went on.  I ate the little Snickers…

The Fight With A Fork

Fortunately, most people don’t understand the battle that goes on whenever someone with an eating disorder sits down to eat.  It’s agonizing,  isolating, and terrifying.  And, the person is grossly misunderstood.  When it gets to the point of a ‘disorder’, it’s not about the person being in control of the overall behavior. There is no ability to cope with  the actual process of eating,  and it becomes completely overwhelming.  Many people with eating disorders have all-or-nothing thinking.  Food = fat. Period.  And fat = failure and the loss of the right to take up space on the planet.  It’s not about the food. It’s about self worth.  In some bizarre way, consuming food symbolizes absolute worthlessness.  Telling someone to ‘just eat’ is the same as telling them that they don’t matter.  It’s messed up, but I guess that’s why it’s called a disorder.

To be in front of a plate of food, no matter the leanness of the meal, triggers panic, and honest-to-goodness terror.  The exchanges going on in the thought processes demand absolute rigidity to the ‘plan’ (of not eating/getting fat). The more someone has starved, the more entrenched their thoughts are to the disorder. And, some research has shown that endorphins are released during starvation, so when someone who is starving eats, they feel bad.  The endorphins stop enrobing how they feel, protecting them from the reality of what is going on.  It’s a vicious cycle that can only be fixed with nutritional rehabilitation at first, and then a lot of work to figure out the reasons for such self-loathing. And that involves dealing with the pain and actual ‘fight’ to resume some sort of  eating, however small the steps may be.

Most people simply pick up a fork and eat. There is no thought about raising the fork, deciding what to eat, putting food on it, raising the fork to their mouths, taking the food from the fork with their lips and teeth, chewing, and swallowing.  Each step in that process is like some alien-enforced cruelty to someone with an eating disorder.  Every step is another chance for the thoughts to interfere and remind the person that they are not in charge of what they do, and if they proceed with eating it proves they’re not good enough to even avoid eating ‘right’.  It sounds bonkers to someone who hasn’t ‘been there’.  But to the eating-disordered person who is faced with the task of eating a meal, it’s all very real.  And most know that nobody around them really ‘gets it’.

I remember feeling actual guilt and shame for consuming more than %25 of any particular item, and if I ate a whole ‘anything’, I was thrown into panic. Even if that ‘whole’ something was a single saltine cracker. “Why did I eat a whole cracker?”  “What is wrong with me that I actually ate that much?”  Seriously, that’s what went through my head. Eating in front of someone was unbearable (and continued for years, often resulting in comments by one administrator at a nursing home  I worked at…”you never eat”, or “it’s nice to see you eat”…by that time, I could cope with those supportive comments; before then it would have been a race to drop more weight as quickly as possible, no matter the method).

As a nurse, I finally decided that I had to disassociate myself from food, and act as if I was giving a meal to one of my patients. It had to be a mechanical process, and started out very slowly.  I added one item to one meal until I could handle that without too much distress. Then I’d add something to another meal, and on and on until I was consuming the meal plan set out for me at the treatment facility that was otherwise nuts. Food was unpleasant, but necessary.  It simply ‘was’. If I didn’t meet the bare minimum (I don’t remember how I figured that out), I ‘grounded’ myself from walking the neighborhood for weird lengths of time.

I bought as many professional eating disorder treatment books as I could find, and read them from cover to cover.  I did all I could to apply the principles to myself, and put food in the proper context. It was fuel- nothing more, nothing less. It wasn’t a measure of my worth as a human.  It was inert and powerless.  And, bottom line- at some point I’d have to eat.  It wasn’t going to get any easier, and I was just going to get sicker, and lose more of the things that were important to me: my job, my health, and my friends.  Being around someone with an eating disorder is more work than a relationship is worth in the context of friendship.  People just leave, which reinforces the feelings of self-loathing.  It’s just one big mess.  And, I was in the driver’s seat, as much as it didn’t feel like it. By acting ‘as if’ I were dealing with one of my patients, I finally was able to make the small steps that eventually ended up with a fairly normal relationship with food, no purging, and a focus on health.

As my nutritional status improved, my thinking about food almost fixed itself. SO much of the obsession is driven by starvation. The study in the 1940s on the effects of starvation (related to the refeeding of millions of people from WWII)  showed that decades ago.  I was amazed at how little effort it took to sideswipe those disordered thoughts as I got better.  Finally, those thoughts just weren’t there.  I might have the occasional ‘nudge’ in my thoughts when I was in front of someone’s celebratory cake, but I was able to ‘out-talk’ it in my head.

It took about three years to be able to go out with friends and not feel guilty for eating.  I had some ups and downs, and in rereading a bunch of journals from that time, realize how goofy my thinking was for much longer than I had remembered.  Every meal was a conscious effort at being healthy in relationship to food.  One forkful at a time, I got better, and the fights were fewer and fewer.  Those days are places I never want to visit again.  It’s still terrifying to think about how brutal the compulsion to starve had been.

So, in terms of eating disorders, I hope I’ve put a fork in them. I’m done.

Raising an Eating Disorder

When I got any sort of clarity about the origins of my eating disorders, I realized they started off pretty early in my life. Now, I don’t blame anyone on what I did as an adult; that’s on me.  But I was given some pretty twisted information about food and eating from a young age.  I look back at photos of me when I was five to seven years old, and there was nothing fat about me.  My mom, however, felt the need to make me ‘diet’ lunches…I never had PB & Js, or even bread very often. Never had junk food or desserts unless it was a holiday or birthday.  I was restricted externally.  The messages were that food was something to be feared, and appearances are so much more important than health.  Those messages stuck. It’s what I knew.

When I was in high school, my mom was never more invested in what I was doing than when I was on a diet. Yes, she drove me to figure skating lessons (and other activities, mostly at church)- but she also required that I weighed a specific weight before she’d take me (actually quite random as she drummed it up in her head). If I didn’t weigh the ‘right’ amount, I’d run the neighborhood to sweat it off.  I was told that one container of yogurt had sufficient calories to equal a lunch. Eating more than that was rather gluttonous.  Shame on me for wanting more. At age fifteen.  I remember making ‘pizza’ out of flour and water (wouldn’t be noticed ‘missing’), ketchup, and dried oregano… I was hungry after school, and that’s what was available if I hadn’t had the chance to sneak off on my bike and hoard things from the nearby grocery store and drug store.  I’d pack things in my socks and pants to sneak them to my room. Not ‘bad’ stuff- usually dried fruit and crackers more often than candy. My babysitting money was quite handy for that. If I went to the mall, I was allowed a huge pickle for a treat. Nothing ‘good’.

But when I was on a verbalized ‘diet’, mom was all ears. And the wallet opened in a heartbeat for the latest fad.  She’d fork over whatever I needed for all the eggs and grapefruit required to follow a ‘diet’ that would put me into ketosis, drop about 15 pounds in two weeks, and leave me feeling like I’d been cut down by a backhoe. But, I’d lose weight…what could possibly be more important than that?

In the summer of 1981, the summer before my freshman year at the University of Ilinois-Urbana-Champaign, I decided I needed to get rid of some ‘fluffy’ weight before heading off to college. It so happened I would be working at a church camp as a nature counselor, and have absolutely nobody telling me what I could or couldn’t eat. Perfect !   I arrived for the staff orientation with methylcellulose tablets that blew up when I’d chew them up and follow with water (to feel full), some over the counter diet pills (that have since been removed from the market because of cardiac issues), and my trusty scale. I was primed.  And then I met a bulimic anorexic who was very glad to give me tips on losing weight, including the use of laxatives. I’d repeatedly been given laxatives as a child (with very embarrassing results for which I was blamed; who gives adult doses of laxatives to their kid and then sends them to school?), so didn’t figure that would be too hard. I never did get the hang of puking. Not my thing, thank God. I tried, but even when I was sick I didn’t throw up…went something like 15 years without throwing up.

The first week, I lost 17 pounds. I remember one staff member who had been on a biking camp week coming back and not recognizing me. I didn’t see much difference, except my jeans were falling off. I called mom, who was thrilled (no alarm at how fast I was losing weight at all), and she sent up a pair of suspenders ‘until I knew what size I’d actually need’.  Within five weeks, I’d lost about forty pounds… 4-0 pounds.  And I was hoodwinked by a slave master called anorexia. People at camp tried to talk to me, but I was still doing my job, so there wasn’t much to be done, except express concern.

When I got to the U of I, I was an obvious ‘problem’ very quickly.  In late August in Central Illinois, it is hot and humid.  I was bopping around the dorm floor wearing six pairs of socks and my winter coat. When I was ‘tattled’ on to the resident advisor, she and the residence hall advisor could still feel ‘cool’ through my socks. They called an ambulance. I was mad. I was also kept overnight at the university health center, and had to talk to a shrink before returning to the dorm. The diagnosis was given- anorexia nervosa. They used the criteria in vogue at the time; I wouldn’t have fit into the DSM-IV criteria as it requires a specific weight, which, in my opinion, leaves many people out there still suffering because they’re not ‘sick enough’; they still die.

I had to go to counseling or be sent home then.  OK, so I had to show up at some therapist’s office once a week.  Whatever.  I still don’t know if that poor woman ever knew if I spoke any more English than “I don’t know”.

And I didn’t know. I had no insight whatsoever as to why I was self-destructing.  To me, I was just trying to get to a ‘decent’ weight.  My goal weight was less than 80  pounds… was that a problem?  I didn’t think so, and didn’t understand why anybody else thought that was an issue. My body, my goal, my business. For the most part, I just avoided people. My roommate moved out because I was too quiet… And at 135 pounds, my ribs stuck out; I’m built funny. My dorm neighbor would wince when she saw me in my skating leotard on my way to the campus rink. Losing another 50+ pounds wouldn’t have worked- but I didn’t see the problem. That was a problem.

And food… I avoided food.  My usual Monday thru Friday ‘menu’ was four ‘meals’ of ten laxative tablets and a 16 ounce bottle of Diet Rite soda.  IF I got snagged into showing up for dinner, I’d eat 1/2 of a baked potato, and then run the twelve flights of stairs to my room. For my PE class, I ran to attendance, and then ran back to the dorm as my personal activity plan. (I got a ‘B’- not good, but I was starting to fall apart).  On weekends, the hunger finally got me by the scruff of the neck and hauled me into an eating frenzy that could include two tubes of Pringles, a pint of dip, a pint of ice cream, a package of cheese (8 ounce), candy, and when I was really desperate, going into the floor trash room and picking the cheese out of the pizza boxes left from Friday and Saturday nights. I never got caught, and I honestly don’t think I would have stopped if I had. I may have been more careful, but when the binges hit, there was no stopping them.

Eventually, I couldn’t function in a school setting, and was extremely depressed at my falling grades. My therapist decided early the next semester that staying in school was no longer an option; I was sent to a psych hospital, as eating disorder patients were back then. There was no specialized treatment, so I was in with the raging schizophrenics and wet-rag bipolars in their ‘down’ phases. There was the one guy who did somersaults down the hallway for 30-40 minutes at a time in a manic phase (geez, made my head spin to watch him).  And the girl who screamed an unearthly scream in the ‘quiet room’. That sound was incredibly disturbing, and disturbed all who heard her. I ‘just’ didn’t want to eat…and I kept company with some serious psych patients. At least it was a private hospital, which helped a lot, but it was no spa-setting like they have now.

I wasn’t a nice patient. Oh, sure, I was ‘nice’….but I didn’t like the rules.  It was figured out fairly quickly that I’d only eat a percentage of my meal tray…so they ordered double portions. That was easy to fix- just trade name cards with the guy getting salads that would make Bugs Bunny shake with excitement. No problem, and the salad guy wasn’t complaining…until we got caught.  Then there was the canned supplement drink that was something between Kaopectate and a really old milkshake. The potted plants didn’t seem to mind them, so I was glad to share.  Until I got caught.  I could run in place in my room every evening, and not be seen for a couple of hours at a time…until I got caught.  I ended up having to spend 24/7 in the ‘day room’ and have someone parked outside the door if I needed to use the bathroom.  That sucked. SO I started being more ‘compliant’.

The staff was actually very nice to me; I was the youngest on the adult unit, and just missed being sent to the adolescent floor for two very simple and ‘lucky’ reasons- I’d turned 18 three months earlier at the U of I, and I was past high school.  Otherwise, I would have been in with the kids who sounded like the poster children for birth control. Oy. Lucky break.  I did manage to go about two weeks with no food after a period of being ‘good enough’ to have less monitoring.  Evidently, the ‘smell’ of starvation was pretty bad, and I was parked in front of the nurses’ station and given toast and juice to get some carbohydrates back into me and perk me up a bit. I was past arguing with them. Bad sign.

At any rate, I was there for months. That’s how it was done back then.  I still had no insight, and wouldn’t until I was several years older, and seeing a therapist after being raped.  I got ‘better enough’ to enroll in nursing school, though I was still on supplements, and my lab work frequently showed  protein deficiencies.  But I was stable ‘enough’.  I was at least acknowledging that there was a problem, and I needed to get it together if I wanted any sort of life at all, and I did.  I wanted to move away from Illinois after graduating from nursing school.

And I did. And my eating disorder moved with me.

“Just Make Her Eat”

“Dear God, please just let me wake up in the morning.”  I weakly said that before I’d drift into a fitful sleep every night for weeks as I was deteriorating from a relapse of starving and purging.  I was getting ‘flack’ from co-workers, and even comments by waitresses on the rare occasions I’d agree to go out and ‘eat’.  I’d lost roughly fifty pounds in about three months, and a hundred pounds total over the previous year or so. And I was stuck.  I didn’t see the weight loss as others saw it, but I knew I was in trouble. Yet, the disorder refused to let me say I needed help.  A former co-worker saw me one day and asked “Are you OK? How much weight have you lost?” in the same tone someone uses when asking if someone has a visible affliction; I did have a visible problem- but I was the only one who couldn’t see it clearly.  I had no answer for her. I was confused. How could anyone notice I’d lost weight? (fifty pounds, and I couldn’t figure that out).  That was the beginning of the end of the tight control the denial had. It didn’t leave completely for years…but I had glimpses of reality after that day.

I was working at one of the top alcohol and drug treatment centers in the country, and my co-workers knew when they saw an addictive process. The denial in spite of negative consequences, the inability to change, the refusal to discuss anything logical related to my behaviors…they were all there.  I was dying.  I later asked my physician how much longer she thought I’d last, and she said less than a month.  I’d lost chunks of skin from my heels. I was crawling up my stairs in my townhouse to get to my bedroom.  My hair was thin. I was always freezing. My bones  hurt. My muscles would spasm. I was dizzy. I was in my own self-imposed hell.  A starving brain can’t process logic. I could still justify not eating- and yet, it felt like my choice in any of it was gone.

The relapse into anorexic and bulimic behaviors seemed to  have been triggered by a fast weight loss while I had pneumonia in late November 1995. I’d lost nearly 50 pounds slowly during the  nine months prior to being diagnosed with diabetes. The diabetes had been diagnosed in June 1995, and the weight loss slowed as my blood sugars improved.  In November, that bout with pneumonia kick-started something I thought had been put to rest years earlier. It turned out to be the worst go-round with eating disorders I’d ever had.

I was still very overweight, so actually categorizing me as anorexic didn’t fit the diagnostic criteria, though the behaviors were those of someone who was ‘really’ sick. My weight was my excuse to keep going. In my head, I was fine if I didn’t have bones showing.  More denial.  Had I started at a ‘normal’ weight, I wouldn’t have survived.  When my co-workers did a formal intervention and shipped me to California for treatment from the facility, I knew I was in trouble.  I just didn’t know how to tell them I knew. And I was terrified.  Each relapse gets a tighter grip much more quickly than the previous one.

I was also exhausted. Keeping up the secrets, and avoiding some odd ritual from being discovered took a lot of mental energy I didn’t have.  My thought processes were erratic as far as what I thought was ‘normal’.  When I was in my late teens/early 20s, I counted curds of cottage cheese, and I’d eat three ‘medium’ ones…three curds of cottage cheese. In 1995-early 1996, I thought I was doing so much better since I’d actually have an unknown number of curds on a fork.  I’d eat 1/4 of a potato, and be stunned that at some point in my life I’d actually consumed a whole one.  With toppings. If I had to eat in front of someone, which had become monitored and critiqued (and very unpleasant), I’d take laxatives ahead of the scheduled meal, so it would exit as quickly as possible. I never did throw up.  I guess that’s a big blessing, as it was one less thing to ‘fix’.  As it was, my gut never recovered.

In the early 80s, in the dormitory, I’d pick cheese off of pizza boxes in the trash room after as many people as possible were back ‘home’ and I felt little chance of being discovered.  Since I wasn’t doing that, I must not be so bad, right?  I wasn’t taking 40 laxatives per day like I had back then, ‘just’ 40 per week, so that was pretty good!  How could I really be sick? But how could I keep going?  I hadn’t purchased new jeans, so I had to use something to tie belt loops together so they didn’t fall off. That didn’t knock a knot in my head either.

One co-worker  (I’ll call her “C”) had a daughter who had been anorexic in college, and she watched me like a hawk. She said she’d talked to our boss about me not doing well, and my boss had talked to me.  “C” would bring food back for herself  from the cafeteria when we worked together, and put pieces of it on a plate near where I worked, and then leave it there.  She’d say something to indicate that she was done, and if I wanted anything it was fine, then return to the medication room where she did most of her work. If the pieces were small, and I wasn’t too terrified, I’d pick at what she’d left.  And the war in my head would go on and on about how pathetic it was to ‘give in’ and eat.  I should be stronger than that.  “C” would pick me up  on our off days to go shopping (she tried to get me to try on clothes that fit, but I was terrified that I’d look so much fatter) and usually out to eat… and make comments about how I was going to die, and other blunt statements about what I was doing.  I thought she was exaggerating because of what her daughter did. I wasn’t like that. Right ?  I’d met her- she was a size four if she was bloated… I didn’t look like her.

I’m not exactly sure what hit the fan, but I  got called out after about 3 1/2 months of things going downhill.  I’d worked a double shift (evenings and nights) and decided to sleep for a while on campus, then later do some dictation summaries that I did for the medical director.  “C” often had a room since she came from a couple of counties away, so she told me I could use her room to sleep while she got started on the summaries that she also did.  She came back around lunch time to get something, and told me to walk with her to the cafeteria to at least get something to drink; she knew I wouldn’t eat. She said she had to stop and drop something off at the operations director’s office, so I followed her. When I walked in, I knew what was going on. I don’t remember now who was already there, though I do remember who ended up being there. They had planned an intervention. About ten people were there, telling me I had to get help, and it had all been arranged. They had the plane tickets, and the driver was waiting.  No help meant no job. Someone had already agreed to take care of my dog, and my car would be watched at work. NO excuses.  My landlady had even been contacted about paying rent when I returned (my boss lived in the same complex).  There was an employee of the company’s Houston office that would meet me at the airport there to be sure I got on the connecting flight to Los Angeles. The treatment center in Port Hueneme, CA would have an employee waiting for me on that end.  Details done. Would I go?

Uh, yeah.  Like the choices seemed so plentiful at that point.  In one way I was so relieved. I didn’t have to fight ‘it’ anymore.  On the other hand, I was terrified of eating.  I knew what those places did. They made people eat!  My brain was so confused, but people I trusted and liked were telling me what a great idea it was. And I was exhausted (seriously, I’d had about 3 hours of sleep in a bed that wasn’t mine after working a double on a day I didn’t usually work).  I still remember thinking that if I told them I’d had a 1/2 sandwich on the night shift maybe I could get out of it, but thought maybe that wasn’t such a swell idea after all.  I felt cornered and freed, and fortunately the fatigue urged the words “I’ll go” out of my mouth.  Then the whirlwind started in ernest.  I was immediately put into the van, taken to my apartment (with “C” and the van driver in tow) to pack, and go straight to the San Antonio International Airport. From there to Houston, and then on to LA and ‘the facility”.

I stayed at that facility for 5 weeks and one day (not that I was counting). It was horrible. It was a drug and alcohol treatment center that took eating disorder patients. No actual dedicated unit.  But I knew that telling my co-workers and friends back in Texas that the place sucked wouldn’t come off as anything but the disorder talking, so I dealt with it as much as I could.  I got sick out there, and wasn’t allowed to attend any of the program activities, so they finally cut me loose. They’d sent me to the ER, and it was really something…they diagnosed me with a blood virus after doing a urine test. W.O.W.   I was better. I did eat. But I wasn’t ‘fixed’.  I had to figure that out on my own, through a very rough few years. But I wouldn’t have been able to get to that point if I would have stayed home.  That part of being shipped out there was definitely a positive, but I wasn’t ‘treated’.  I talked to my boss and some of my co-workers (my only friends) when I was in California…my boss would say “Tell them I said ‘just make her eat'”.  There was so much more than that needed to result in any sort of real recovery, but it was a start. Without the nutritional aspect being addressed, anything else was pointless. The dietician at the facility wasn’t nuts, so that helped !

After treatment with my 'before' jeans... 1996.

After treatment with my ‘before’ jeans… 1996.

But I did get something that can’t be appraised- I got another chance. For some reason, God listened.