Feeling Deformed… and Being Needed

I just got back from the endocrinologist’s appointment… they always weigh me there. I already know the number will be horrible before I walk in the door. I know it every time I look in the mirror, or remember the rings I can’t wear anymore, or wonder why I look like an orangutan (my chin has more than doubled).  I detest what I see when I look at myself, so I avoid it whenever I can.  But, bless the doc’s heart- she didn’t rag me about it.  My diabetes numbers are very good, my blood pressure was 98/60, and my blood sugar records were more likely to be on the low side than too high- so it’s not about too many carbohydrates.  And, I’ve stayed within 3-4 pounds for a  year.  But I’m not happy.  Not by a long shot. I look horrible.

I know that as a Child of God, I’m supposed to look at that to determine my self-worth.  I know that He has everything under control, and that He has some reason for this.  I’ve tried so many ways to lose weight, and it just won’t move. I’m afraid to get too radical, since I have a history of some pretty significant starvation and eating disorders. I don’t want to go back there.  SO, how am I supposed to learn to accept myself like this?   I’m unacceptable !  I don’t know what He can do with me like this to be of use to Him.  But I have to trust that He’s got it figured out.

My oncologist told me to just be thankful that I’m alive; many people with acute promyelocytic leukemia don’t make it… I know of two people by name who didn’t even know they were sick  until a day or two before they died from brain bleeds. One was 29 years old, the other was an 11 year old kid.  They both shook me up more than a little.  I was pretty sick in the hospital for six weeks… and initially I lost weight on the induction chemo. Then came the consolidation (arsenic), and maintenance (M6-mercaptopurine, methotrexate, and tretinoin)… 19 months total.  I blew up by 50 pounds from the lowest post-induction chemo weight (30 pounds from before the cancer diagnosis). It’s humiliating.  YES, I’m very thankful to be alive, but I feel like I’ve failed at getting my body into better condition.

My mobility is limited because of degenerative disc and joint disease, bone spurs, and fibromyalgia. My activity tolerance is limited by dysautonomia.  I’ve tried sitting exercising, and my heart rate gets to the point of making me dizzy and pre-syncopal.  I can’t get in a heated pool, or the heat will trigger my blood pressure to nosedive.  I’d slink under the surface of the water, and drown. Not helpful.  I can do some isometric stuff- but that hardly melts off the fat.

But I am thankful for a lot. I love my new puppy, and she needs me to be here for her.  She’s someone who notices if I’m around or not, and wants me close to her. I need that. I don’t get any sort of personal satisfaction from being a nurse anymore… I miss that a lot. I loved working, and am thankful that I had the years I did.  I am very thankful for the stuff I’ve survived.  I want to be here.  I’d rather hate my body than have it parked in a marble orchard somewhere (that’s what my dad calls cemeteries).  I enjoy many things (mostly on TV, or online).  I’m thankful that one day, I’m promised to have a new body in heaven.   I’ve requested a size six. 🙂  It’s just hard for now.

My puppy doesn’t care if I’m a size &^%&# or a size zero.  She just wants me here. When I call her name, she wags her tail as if I’d just given her the best prize in the world.  To her, I’m enough.  I’m hers.  I guess maybe I’ll just have to start there, and have that be enough ❤

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.

 

 

Talking About Things That Hurt…

I think that for the most part, people mean well.  Even with blinding avoidance of some topics, I don’t think malice is behind what seems like apathy, or even repulsion.  My guess is that it’s more a matter of just not knowing how to approach some topics, especially if that topic is linked to some sort of instability or potential ‘trigger’ for harm.  In my life, that applies to anything related to my hospitalizations for being suicidal, or having attempted suicide (though I never really wanted to die…I just didn’t know how to get out of the pain associated with eating disorders).  It’s just not something that is covered in “Social Conversation 101”, and add a church background that repels any sort of mental pain as some type of spiritual weakness, and the doors and mouths are shut when the exact opposite is needed.

I love that I grew up in a church that was a great social and spiritual setting. The kids’ and high school programs were a lot of fun, and the place where most of my friends hung out.  I have deep gratitude for being raised in a church, and while I haven’t been to any particular building for many years (related to my job for a lot of that time, and otherwise my health limitations), my belief in God and Christianity are strong.  I’m not ‘rigid’, as is often associated with evangelicalism.  When I was growing up, the beliefs I learned were just how it was.  I then spent time as an adult reading through the Bible on my own, and found so much less judgement and hostility towards ‘non-believers’…that those who hurt are who the Bible is meant to attract, as well as give guidance to those who do believe. It’s not meant to be  a ‘weapon’ of pompous piety.  I was embarrassed at the narrow-minded acceptance parameters that I’d grown up with, and I also felt that I understood being on the ‘wrong’ side of what was acceptable.  My high school and  post-high school years were an intense period of  general unrest, eating disorders, and suicidal depression that never happened unless I wasn’t eating properly. During those years, suicide was something that came up more than once… yet I couldn’t really discuss it with anybody who knew me very well.  My parents found out I was mentioning some dark topics, and then chastised me for ever talking about such a thing; I had nothing to be all that upset about, why did I want to make THEM look bad?  All about them.  So I didn’t talk anymore. Until I got away from home.

I had worked at a wonderful church camp during the summers before my senior year in high school, freshman year of college, and half of the following summer. I’d met some incredibly caring people, and I’d disclosed a bit about the depths of despair I’d felt with the eating disorders and accompanying depression with a select few of them.  I did talk about suicide with one of them, that I remember, during a semester break when I was working at a missions conference that she attended at the University of Illinois, where I went to school.  She was also quite young at the time  (though older than I was, so I was sure she knew just about everything, being in her 20s !), and she was a major source of encouragement.  When someone is in the midst of not knowing if they even want to live, it’s not that helpful to tell them they’re not doing something ‘right’, and she didn’t do that. She did focus my thinking towards the lies in my head, and more on my/our Christian belief system.   I adore this friend to this day, and while  it  wasn’t her ‘job’ to be my counselor, she did the best she could.  Now, many years past those miserable early adulthood years, I do agree that focusing more on being what Christ wants of me, and less on the superficial things like weight  and human perception (at least how it was then) is very much what I want to do, and needed to do back then.  But as a scared, malnourished, ashamed, and depressed eighteen year old, I didn’t really get it.  But at least she talked to me at all… I didn’t feel safe talking to about %99.9 of people I knew (or didn’t know, such as therapists).  And she listened, which was ‘enough’ to help me hang on.  She gave me her time.

Sometimes,  just having something to hang on to is ‘enough’ to get through another day, and maybe that next day isn’t so bad, so it’s easier to see making it through the day after that.  I don’t think it’s a sin to have ‘negative’ emotions. I think that there can be sinful choices in how they’re handled sometimes, and I also think that there are times when people are so deep in the weeds that they need someone to look to while they try and climb back to tended ground.  I also don’t think that mental illness is a sin or sign of spiritual weakness.  It’s an illness,  and those who suffer from it (and it is suffering) are seen as being spiritually weak  in many church settings.  That is SO sad.

I can only imagine Jesus looking down at those who are hurting emotionally, and wanting those who claim to know Him to reach over and encourage and gently nudge the ones in pain so they  keep adding days to their lives until the oppressive clouds lift, and they  see daylight again.  I don’t see Jesus adding shame and judgement to someone who is already struggling to see that the next breath is worth taking.

There is a time and place for instructional discipleship, and a time and place for compassionate encouragement.  But silence in the middle of a rotating thunderstorm just doesn’t make sense.  It’s that silence that can be the last opportunity to reach out to someone who is spiraling out of control, and into a place of absolute helplessness and hopelessness, and ultimately suffocating darkness.  Even ‘just’ asking if someone wants to talk, and ‘just’ sitting with them can be enough to let them know that they matter enough to keep taking up space on the planet.  Nobody has to know all of the answers.  And it’s possible to have more questions than answers and still be a temporary rock in the middle of pain that feels like it’s going to last forever.  Being so afraid of doing something wrong that nothing is done is sometimes beyond useless. To someone who hurts, being glossed over by those who know them is worse than having something not be ‘perfectly’ helpful.  Perception in the middle of pain is often very ego-centric and inaccurate.  But a kind word in a gentle tone can ease so much.

There is nothing wrong with saying “I really don’t know how to help you, but I am so afraid for how much pain I see you in.  What can I do? I am here for you. You matter to me.”.   Having human limitations isn’t going to cause irreparable damage to someone. But apathy and inaction might.  I don’t think that anybody is ever the ’cause’ for someone else taking their own life.  If someone is resolute in their decision to at least try and end their life, they will do so. But when there are signs that something is wrong, I do believe that at least offering some human compassion and understanding can’t hurt.  And, no matter what, I’d rather know I at least tried.

 

 

Suicide Attempt: Those Who Knew Never Asked…

…why I attempted suicide in September 1982.  I later found out that it was a big secret from  family (or close friends) who seemed like they’d be obvious to inform (as in why I’d suddenly dropped off the face of the earth and was no longer at the University of Illinois, Urbana-Champaign campus).  And, for the most part, it seemed  like nobody really gave a rats tail.  I did have an uncle who had visited me at the psych hospital the semester before, God bless him.  He wasn’t afraid to see whether or not I was drooling in a corner somewhere (I wasn’t – in fact, back in those days, I was downright intact compared to many there, and it was a private facility in the days where  you either went to a state hospital – like ‘One Flew Over the Cuckoo’s Nest’- or to a private facility that was essentially a hotel with nurses and a lot of pills; there were no ‘treatment centers’).  There was the friend of another uncle who befriended me (strange situation).  But that was the extent of asking me WHY I was there.  My parents were the most silent.  Nobody ever asked me why I’d tried to end my own life.

That seems a bit odd. Maybe it was some sort of bizarre form of ‘manners’ to not ask.  But if there’s ever a scream from a mountain top that someone needs to say something about SOMETHING, it’s a premature, unnatural attempt to die. During that time, my mom was going through radiation, post-mastectomy, and I’d been dropped off at school a week early to accommodate her radiation schedule (I was fine with being at school early- though the dorms were kind of spooky without everybody there- there were about 10 of us in a 12-story dorm).  I don’t remember dealing with my mom’s cancer at all. I’d been in such a rush to ‘look normal’ after having to leave school the semester earlier… I know I’d never have wanted to ’cause trouble’.

Looking back, I’m not sure I know all of the reasons for the overdose, and only remember the first part of it when I mechanically took sleeping pills one after another with the only conscious thought being how much I just wanted some rest.  I don’t remember any actual ‘death wish’. I  ‘just’ wanted relief from so much pressure of being back on that campus after being ‘removed’ the semester before because of deteriorating anorexia, bulimia, and depression with a suicide ‘plan’ (that was pretty dang lethal).  I was trying SO hard to ‘look OK’, and that pressure was unbelievable. SO when I started taking those sleeping pills, one after another, I was only wanting relief from the pressure. I had intended to wake up, from what I remember. When I woke up after nearly 3 days in a coma, I was confused.  I also didn’t believe that they’d found the remnants of fifty antidepressant tablets when they pumped my stomach.  I don’t remember that at all. I eventually sent for the hospital and university health center records.  I needed gaps filled in.

I also wrote to my roommate years later, who told me that I’d been out at a local bar (underage), and came back to the room drunk before dinner. She hadn’t seen me actually take the sleeping pills (I do remember her being in the room, but I was sitting at my desk, my back to her; being drunk explains the impulsivity and lack of planning for consequences of my actions- and why the drugs ‘took’ so intensely). But she said I went to sleep and didn’t get up the next morning. She said I’d mumbled something about not going to class because I was so tired. When she got back late that afternoon, I was still out of it, and she couldn’t wake me up. At all.  She got one of my floor-mates from the last semester who knew me better, and she looked at me and called the ambulance (about 24 hours after taking the pills…it’s amazing that I survived that long). I was taken to the university health clinic, who sent me on to a regular medical hospital/trauma center with a blood pressure that was nearly meeting in the middle. (Not good).

In looking at the records, my ‘coma scale’ couldn’t go any lower. I responded to nothing. Zip.  And, understandably- but frighteningly, I remember none of that. I don’t know when I took the bottle of antidepressants.  I don’t remember having my stomach pumped (and used to get so uneasy later in my nursing career when OD patients were often ‘threatened’ with having their stomachs pumped as some sort of punishment; they were seen as deliberately causing unpleasant work for the ER staff who had ‘real’ patients to take care of- those who hadn’t put themselves in that position- never mind that the person was in so much emotional pain that they felt they had no other options).  I never told anybody that I planned to overdose. I don’t think I knew I would OD.   I’d been trying to fit in and be social (not something that came easily outside of my home church group setting). I wanted to be in school.

I do remember asking the nurse in ICU what I had been wearing when I was brought in, as that would tell me what day it had been. I’d been brought in on a Wednesday.  I had been wearing a red gingham shirt and overalls- I did remember putting those on on Tuesday- brought to the ER on Wednesday.  I probably looked like a dead farmer.  I was very close to not making it.  I sent for my medical records years later, and my vital signs were very bad- as in not much difference between the top and bottom numbers of my blood pressure, a heart arrhythmia, and very slow respirations.  I was given some resuscitative drugs to maintain my heart rhythm, and fluids to maintain my blood pressure, and over a few days, I woke up.  Freaked. Out.

My first recollection is of someone moving an oxygen mask to ask me a question, so they could see me talking.  Then fade to black again.  Then, I clearly remember a nurse going towards my crotch with a syringe (no explanation that she was removing the catheter). I’d never been in a real medical hospital before. From there on, it was a bunch of blips of memory, finally getting back to a ‘slow’ normal. I remember being very confused by the Saturday cartoons.  I’d been propped up in a chair with the cartoons on (at age 18?), and it was hard to follow them. Bugs Bunny was too ‘deep’. For a while, there was concern about permanent brain damage, and the psychiatrist I went back to was surprised I wasn’t impaired.  I also remember the charcoal diarrhea… I didn’t know the ‘rules’ in ICU about not disconnecting the EKG leads without help before getting out of bed ( I didn’t want to bother anybody), so it would look like I’d flatlined when I was just in a hurry to get to the bathroom.  They didn’t like that very much. I felt the bruising on my breastbone where I’d been ‘knuckle-rubbed’ to wake me up, and the scratchy feeling in my throat where tubes had been.  And it all confused me.

While I don’t remember a lot about the overall overdose, I do know I didn’t want to leave school! I wanted to do well !  I wanted to show my friends that I was OK ! (And with that, I had some desert property in the Everglades for anybody who was on board with that idea). I didn’t want to be a failure.  I have to admit, that at 18 years old, in an ICU room in Urbana, IL, I had a serious meltdown when I was told I’d be sent back to the nut farm I’d spent February through mid-April earlier that same year.  My parents had been called (that was like ramming a dagger into my heart- how could they call them? I especially didn’t want to disappoint them… but  how could they NOT call them?  I was a huge liability at that point). Everything was falling apart.  I was hysterically crying when I saw my mom and dad show up later that day (?Sunday- no cartoons, and mom had to be at radiation on Monday) after clearing out my dorm room and selling my books back to the bookstore– for some reason, losing those books was almost like the ultimate ‘proof’ that nobody believed in me… I’d been ‘removed’ from school. Again.  For weeks, I cried about that.

My therapist from the previous and current semester had been called in (she was recovering from a blood clot in her leg, and having a semi-miserable first months of pregnancy).  She explained that there were no other choices.  I couldn’t remember the overdose- that was almost worse than planning it out.  They couldn’t ensure my safety. Forest Hospital in Des Plaines, IL had already been notified, and since I was as medically stable as I was going to get, I was being discharged from the ICU to be driven back up to the suburbs of Chicago.  I was devastated.  I was horribly ashamed.  I’d failed. Again.  I didn’t see the ‘illness’ part of what was going on. I just saw failure.

It was almost a bit of a relief to be around people who knew me, who didn’t think I was a lost cause (though the next several months- September 1982 through early January 1983 weren’t exactly smooth at the hospital… I was a train wreck, and things got worse before they got better, in the days of endless insurance days inpatient; ‘losing’ school was absolutely devastating, and stirred up a lot).  I spent a total of 7 months in the hospital over 2 admissions.  I was tested (I’m reasonably intelligent, so they said- LOL) from one end to another, and I tested them. I’d always been pathologically well-behaved (confirmed years later by my folks), and at the nut farm, I blew through some rules.  I also tried to escape (going where?) and hurdled the gardner and his wheelbarrow only to collapse on the sidewalk about 1/2 a block from the hospital, in full view of a busy road…. nice to have that on my resumé. *rolling eyes*  At any rate, I was in a place to work on whatever was the immediate problem, which was making sure I didn’t blindly go on some life-ending rampage.  I was never a ‘danger to others’… it was always ‘danger to self’.  I’d give the shirt off my back to ‘others’.   Whatever had happened in that dorm room in Urbana couldn’t happen again.

In some ways I don’t know if I’ll ever know what was going through my ethanol laced brain that Tuesday afternoon when I started eating sleeping pills.  Maybe the booze was a huge part of that horrendous time.  It does explain a lot- but there had to be enough going on to ‘set up’ what happened.  What I did.  The memory loss has always been really hard to deal with. There are days that are just ‘gone’.  No matter how hard I try to figure it out, it’s just not there.  But I always wondered why nobody asked me if I’d really wanted to die.  The answer is no.

Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as different triggers for their symptoms. This is just my situation…

I was diagnosed in 1996 after a tilt-table test (I was strapped to a table, and it was ’tilted’ so my feet weren’t bearing my weight, then monitored to see what my blood pressure did. It dropped to 44/16…. that’s not a typo).  I’d been passing out frequently, and my housemate (also an RN) encouraged me to get checked out. I kept thinking it was ‘just stress’ after returning from eating disorder treatment and trying to get into healthy routines.  Anyway, I had a neurologist who was familiar with dysautonomia, so that was really fortunate. Many doctors I’ve seen (before and since) look at me like I’ve made something up.

The episodes I’d have (when I was still working, and putting more strain on my body) included bright red flushed cheeks, chest blotching, blue tinged lips, and very pale skin everywhere else. Eventually, I’d pass out, and become extremely pale, with very shallow breathing- to the point that one boss thought I was dead.  During the ‘early years’ (in Texas), my employers were more willing to work with me when I had a desk job.  I’d be allowed to lie down, and then resume work when I felt better. When I moved back to Illinois, I was sent out by ambulance when I’d keel over. I’m sure it was to cover their butts, but it annoyed me to no end, and the ER they sent me to was horrible and cruel.  I ended up having to go on disability since I was having so many episodes.

My main triggers are heat and pain, which cause my heart rate to go up and then suddenly drop, and my level of consciousness to go down.  Exercise, or any activity that causes heart rate changes is a no go.  Cleaning my apartment is a SLOW process, and embarrassing that I’m not able to do a better job of it.  Eating hot foods in a ‘normal’ temperature environment causes problems. If I eat very warm food at home (where I keep the temperature around 62-66 degrees year-round), I do fairly well.  But eating away from home isn’t something that is pleasant to think about.

I’m in pain no matter what, which is a problem if I can’t keep it under relatively tolerable control.  I start passing out if it gets worse.  I have fibromyalgia and chronic headaches, and recently have had problems with my left shoulder muscles ‘pulling’ to the point that I can’t really use my left arm for a day or so until it gets back together.  I have to avoid anything that increases pain.  Laundry, emptying the dishwasher, taking out the trash, and things like that have to be paced.  When I do my main monthly shopping, I’m done for the rest of the day. It’s very painful.  I get many things shipped to my home, which helps with some bulkier items.  I live alone, and while my dad would help with as much as he can, I still want to do what I am able to do. I just have to be careful.

Being in environments away from home is extremely risky, and I have to wear an ice vest to avoid being overheated. I’m also waiting for an ice bandana, and have shaved off most of my hair, since my head just gets too hot.  I can’t tolerate doctor’s office waiting rooms, friends’/family’s homes, church, or just about any place that isn’t less than 66 degrees at all times.

Over the last couple of years, it seems as though the dysautonomia is getting worse. I have to be more careful about activities, pain, and temperature.  I don’t know if that has to do with the chemo I had for leukemia, or if it’s just the nature of the disorder. At any rate, I’m having to make more adjustments.  And, I’m having to let people help me more with getting my apartment straightened out.  I hate needing help (but I’m thankful for it).

That’s just an example of what things are like for me…

Running on Empty

The fall of 1981 was one of isolation, hopelessness, and being totally overwhelmed.  I was supposed to be having a wonderful time as a freshman at the University of Illinois- Urbana-Champaign campus.  I was 17 years old when I got there, and had become seriously anorexic the summer before when working as a nature counselor at a summer church camp I loved.  I wasn’t super skinny, but my mind was a total eating disorder trap.  Every thought included how to avoid eating, how to ‘get rid’ of food (I used laxatives- 10 of them 4 times a day), and how to avoid being noticed.  I bombed that last one pretty quickly.

My roommate and I didn’t last long. She thought I was too quiet, and requested to move out (which she did).  Looking back, I can’t blame her; watching someone self-destruct and be so consumed by the eating disorder had to be miserable for her.  We both had double rooms to ourselves- which just meant more isolation for me.  Outside of classes, I spent a lot of time walking around campus, or taking the bus to various parts of town, and just walking.  When I was in the dorm, I’d look out of my 12th floor window, and follow the lights of cars as they drove through the countryside at night.  I played a Christian radio station for comfort, and just wondered if I’d get better.  Then I’d get scared that ‘getting better’ meant eating, and I’d fall back into the ‘starvation’ mode with even more determination.  Other than the background music, and the fighting in my head, most nights were eerily quiet.  Those who know the insulating effect of heavy snow, and how it mutes most sound, will understand what my head ‘sounded like’ for the many months I was there.

I’m not sure how I lasted as long as I did.  My weight was relatively stable, but the starving/bingeing/purging patterns were also how I was ‘living’.  I’d take 10 laxatives at breakfast, lunch, dinner, and bedtime with a 16 ounce glass bottle of Diet Rite cola.  If I ‘had’ to be seen eating at dinner (only meal where I’d be noticed- missing, eating, or acting weird), I’d have an apple or half of a baked potato. That would trigger intense guilt, and I’d run up the 12 flights of stairs to my room.  Then I’d get homework done, and go back to watching the lights of the cars in the night.

When I did try to get to sleep, it was another battle.  There were many nights when I’d watch one specific star as it moved across the sky out of my window.  Many times, I’d get up to go to the bathroom (spent a lot of time in there with 40 laxatives per day), and pass out before I could get back to my room.  I’d be sent out by ambulance, rehydrated, and sent back to the dorm.  They’d lecture me about how unhealthy eating disorders were, and I’d nod, then go back to my crazy routine.

What stands out the most from that semester, besides being so sick, were those nights of such ‘silence’ as I watched those car lights (and occasional police car’s red flashes ) move across the view I had from that 12th floor dorm room.  I’d wonder what those people were doing, and if they were in their own living hell.  I’d wonder if I’d ever get out of the mess in my head.  I’d wonder why I couldn’t just snap out of it and eat, without the blinding feeling of guilt for having fed myself.  It was like I was punishing myself for existing and having human requirements to survive.  But I had no good reason why.  I’d been born there (and placed for adoption), but the starvation (and diet contests) had been brewing for a few years- so the whole adoption/birthplace thing didn’t really pan out.  My mom had been constantly on me about my weight (when I wasn’t fat).  Maybe I just picked up where she left off.  I don’t know.  I eventually did ‘click’ with the explanation given by Peggy Claude Pierre- that the ‘negative mind’ was the one in control during eating disorders, and refused to allow the anorexic/bulimic to tolerate self-care and survival.

But those nights were so muffled and eerie.  I won’t ever forget those.  Or how scared I was.  And alone.  I had several people looking after me from their assigned ‘roles’ (therapist, resident director, resident advisor, and several dorm-mates), but nobody understood.  They each tried to help in some way, but I was on my own, with something I couldn’t handle. I refused to tell my parents (I saw that as failure, which wasn’t allowed).  So I tried to just keep going… but how long could I go on fumes?  Many days I had fewer than 300 calories.  When I binged, it was a disgusting amount of food, but it possibly gave me enough of a ‘boost’ to keep going. Laxatives don’t remove food; they remove water- so some nutrients got in… but I was running on empty, and running OUT of time.

And it was so, so quiet when I looked out at the world from that 12th floor dorm room window.

University of IllinoisOctober 1981

University of Illinois
October 1981

Eating Disorders and Suicide

This time of year stirs up memories of my first year at the University of Illinois (Champaign-Urbana campus).  I’d arrived there with anorexia well entrenched, after losing 45 pounds in about 6 weeks while working at a church summer camp as  a nature counselor.  I didn’t want to get to college ‘fat’.  And I didn’t (though I thought I was grotesquely huge), but I was already a slave to the eating disorder (ED) voice in my head that made eating absolute hell.  People who haven’t crossed the line to an actual eating disorder don’t get it. I don’t expect them to- and I’m thankful they don’t know what it’s like to have a war in their heads over the number of curds of cottage cheese that are ‘acceptable’.  Yeah- it gets pretty weird.

By the beginning of the Spring semester, and returning from Christmas break, I was a mess. Being home for the holidays had been very difficult- I’d done what I could to avoid being around family by working at the University during a missions conference (‘Urbana ’81’).  Ironically, I worked in the food service area. But I had to be at home at some point (and in Florida with my parents for Christmas itself- that was a battle I lost).  Trying to hide an active eating disorder and starving/purging isn’t easy- and caused even more havoc in my mind.  I didn’t return to school at all well.  I’ve never been clinically depressed unless I’ve been starving/malnourished.  And I was a mess when I got back to my dorm.

I’d been seeing a therapist since I had arrived on campus the fall of 1981, as my resident director, resident assistant, and dorm-mates had found me wearing 6 pairs of socks and a winter coat in late August in central Illinois… humidity with the heat was probably stifling- but I was freezing.  The RD could actually feel the cold coming through the socks. SO she called 911 and I was hauled off. I was diagnosed with anorexia nervosa the next morning, and ‘ordered’ to start therapy or leave school.  I had no clue what to think about therapy, but I knew that going home wasn’t an option. It would mean I’d failed.  SO I went to therapy.

That therapist ( a very nice youngish woman) probably never heard me say much more than “I don’t know”- and I didn’t !  I had absolutely no insight, and no clue what could have gone on in my past to lead to the eating disorder.  By the Spring semester of 1982, I was really falling apart, and had a plan to kill myself.  My roommate had moved out long before (because I was too QUIET !!), so I could be isolated for quite a while before anybody would have noticed I’d been missing.  I had planned to take the tranquilizers (Thorazine- supposed to chill me out enough that I didn’t care if I ate) I’d been given at the university health system pharmacy,  and lock myself in my room, IN my closet (with the keys), and just wait.   I’d become fairly resigned to the idea that I wasn’t going to  live all that long with the anorexia (which had included periodic bingeing at that point, and daily purging via 40 laxatives spread out throughout the day), so it was more about just dealing with the inevitable.  I didn’t really want to die– I just didn’t know how to get out of the ED.  I felt trapped, overwhelmed, ashamed, and hopeless.

The emotional pain had hit the tipping point.  For some reason (like wanting to live maybe?), I spilled my guts to my therapist, who promptly had me escorted to the university health system (via the University Fire Department….. subtle), where I stayed until arrangements could be made to have me shipped to Forest Hospital in Des Plaines, IL.   It was a nut house.  Back then, there were no eating disorder ‘treatment centers’… if you had a nutty problem, you went to the nut house. That in and of itself was terrifying, but I was even more afraid of facing my parents- and being a disappointment- so a longtime adult friend and her daughter (former babysitter) came to get me…once the blizzard passed, some 3-4 days later.  The therapist and health center folks had wanted me out of there much sooner, but the weather was a big problem.  So, I waited at the health center ‘hospital’ as dorm friends came and went, both trying to cheer me up and also to say goodbye.

Suicide  attempt averted. That time. The next fall, I returned to the university, and the pressure build-up was almost instantaneous.  More on that later….