Suicide… It’s Not About Dying !

Tonight we learned  that Robin Williams is dead, and the consistent information is that he took his own life.  Social media being what it is, there are many comments.  Most are of shock and acknowledging the incredible talent and genius of a brilliant actor and comedian; another  who is gone too soon.  There are some  comments that are just rude and clueless.  But there are also those who just don’t understand how someone could get to the point of feeling that it was just time to give up on life, that it was too painful.  That there is no hope in sight, and that the people closest to him/her would be better if he/she was just gone… Thank God most people don’t understand what it’s like to be so far down in a pit of ‘no hope’ that suicide makes sense.

Suicide isn’t as much about dying as it is about wanting the pain to stop.  The cause of the pain isn’t really that important, though addiction is often a component.  Alcohol, drugs, eating disorders, gambling, etc. are ALL ways to numb some sort of emotional pain.  I worked as an RN in drug/alcohol rehab and adolescent psych for years, and nobody ever listed death as the main reason they considered suicide.   I had a good friend (also a co-worker) who was so solid in his sobriety and recovery  when I knew him.  He became a well-known therapist in the city where we worked.  Recently, I found out that he killed himself a few years back , while  I  was searching for him online, hoping to reconnect.  He had great local resources about where to get help (including where he could get away from town for treatment).  He knew the warnings… and yet, he relapsed into drugs, and overdosed in an amount that was said to be inconsistent with an accident.   I was able to find a close friend of his who could help me fill in the blanks, enough to know that something happened to take him into that dark hole of depression and relapse. Those are never good together.

With Robin Williams, he had resources and had recently gone back to treatment for a ‘tune up’ of sorts, knowing that he was feeling a need to protect his sobriety, not that he’d relapsed  (common knowledge).  He was getting help.  None of us know what his pain was from.  We look at the professional aspect of the man and can’t make sense of what could have been so bad in his life that he decided to give up.  But even if we knew the ‘reasons’, for most, the decision to end one’s own life will never make sense.

In 1982, I was battling an eating disorder, and got to the point of feeling very overwhelmed and unable to see that things were going to get better.  I don’t remember wanting to die.  I overdosed and was in a coma for 3 days.   I was lucky to have survived, and was able to get past those feelings of just wanting to go to sleep so I didn’t hurt (in my situation, nutritional ‘rehab’ was a huge part of clearing up my thinking).  I remember taking the sleeping pills, but don’t remember ‘death’ being my goal.  I don’t remember taking the 50 antidepressants.  I don’t remember the ambulance trip, or anything else until  I woke up in ICU three days later.  At other times, always when dealing with eating disorders, I would find myself in a mindset that didn’t see an end to the overwhelming hopelessness I felt.  I would feel myself on the edge, and yet I didn’t ever want to die.  I just didn’t want to feel so much pain.  It’s an incredibly dark place to be… and there’s a feeling of loneliness that has no words to adequately describe it.  Even with people in my life, they didn’t understand what was going on in my head, and the surrounding circumstances made things more isolating.

For those that don’t understand, please be thankful that you have no frame of reference for that kind of despair.  Please look around and see if there is someone who might need a quick phone call or note to say that they matter, and to just check in to see if they’re OK.  If someone you know has changed and either seems really down, OR suddenly ‘up’ after a period of severe depression, see if they’re really OK.  When someone makes the decision to give up, sometimes they are so relieved at making the decision, that their mood improves.  That type of ‘improved’ mood (sudden) is an alarming sign.  Gradual improvement is more likely due to good treatment ( medication for the biochemical issues, and/or psychotherapy to resolve emotional pain).  Don’t be afraid to ask direct questions.   When someone approaches from concern, it’s unlikely that it will make a situation worse.

Clinical depression isn’t sadness.  It’s not about ‘reactive’ grief that many people will feel during their life when they lose a friend or family member to death, or the loss of a job, pet, or if someone moves away who had been a part of daily life.  Clinical depression is often a biochemical disruption to normal thinking and feelings.  Hopelessness and helplessness become so pervasive that the ‘normal’ way of seeing solutions to problems just doesn’t work.  While suicide is a permanent solution to temporary despair, it doesn’t feel that way to someone who finds it  worth considering.  It doesn’t feel temporary.  It’s kind of like being too far underwater after falling off of a boat, and wondering if getting to the surface is ever going to happen… like there’s no air left in life, and no ability to feel that the surface could be reached with just a couple of kicks to reach the air that restores hope. Even if getting back on the boat is a ways off, at least there would be air.  It’s like treading water UNDER water, and never getting closer to the surface.  It’s hard to withstand that type of hopelessness and helplessness for a long time, and each person has their own threshold for how long they can hold on.

People can’t snap out of it.  They can’t just go pop in a funny movie and everything is OK.  It’s a disease, that needs treatment, and  support of friends and family that understand that the person is doing the best that they can.  And when the ones who are depressed are finding themselves going further from their normal way of looking at life, they need someone who can help them hang on…

But sometimes, it just isn’t enough.   And those left to make sense of the loss  will never have a good reason to satisfy the ‘why’ questions that inevitably come up.  It definitely isn’t fair to those left behind.  And while it’s something they have to live with for the rest of their lives, it really wasn’t about them.  Sometimes, there is nothing that will redirect a tragedy.  But nothing can take away the good memories the person leaves behind… always remember the good.

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If I Could…

...I would fix everything, and walk you back to your normal life.  I would take the pain and nausea and put it in a box,  and throw them  into a volcano, permanently removed.  I’d take the fear and confusion, and surround you with nothing but gentle hugs, a warm blanket, and a feeling of safety.  I’d take the frustration and slap it upside the head, and then help you find something to make it all right.  I’d look for something silly to show you how you can still smile, and how you really are still you in the middle of all of the chaos. (You really do have a great smile and laugh).   I’d take away that feeling like you’re dying, and remind you that this is all temporary, and that you are the best candidate to survive all of this.  Cancer doesn’t define you; it shows how strong you are.  And you really are.  But you are not cancer.  You are so much more.

If I could, I’d figure out some way for you to know what is and isn’t normal in an abnormal situation you’ve never been exposed to.  I’d give you all of the information you need to understand what is happening (that I know of), so you know that you have  a solid chance at beating this.  You’re strong, and you dwell in the positive when you’re you, in your normal life.  I wonder if some of the pain is the grief of the life you’ve had to set aside for a while.  I wonder if anybody has sat down and taken your hand and told you that it’s more than OK to feel that this level of vulnerability is terrifying, and affirm that  it’s not going to last forever.  And being terrified, and grieving isn’t going to change who you are. It will create another depth of character you didn’t know you had.  I wish you never had to deal with all of this- but you will come out stronger.

I’d look you square in the face, and tell you that the drowsy feeling with pain meds is normal, and often gets better as your body adjusts to both the pain relief and the medication in your system.  I’d let you know that you’re not going crazy. But I understand how it can feel that way (people who are truly going nuts don’t worry about it  🙂 ). Any bonafide goofy person I worked with  wasn’t concerned in the least.

If I could, I’d stand on my head if I thought it would make you well (and if you can get a visual of me on my head, well…. that should be worth a giggle. I’d probably pass out half way up, and then what?  A  ‘fluffy’ middle aged door stop).  But I’d do it if it meant you’d feel better ❤

You have an amazing support system with your friends/coworkers/family.  It awes me that one person has so many people around for support.   They will help you heal as I’m sure they already have.  Just one more minute of pain, just one more hour of uncertainty, just one more day of STILL being here and fighting this beast that has turned your world upside-down.  Take it in small increments. You’re stronger than a beast who was only brave enough to go in the back door !  You have a life that is waiting for you to get through this.  And that will happen. I wish I could make the journey easier, and speed up the process, but one thing about cancer- you want the treatment that gives you the best longterm odds.  Keep thinking about how mad the beast must be !  😀

You are already a survivor, did you know that?  Seriously, they consider anybody who gets diagnosed to be a survivor- unless you die of shock when you get the diagnosis and fall over stone-cold on the floor.  But you got through that  and stayed conscious !  So, you are surviving.  There’s some work to do on the ‘thriving’ end of things, but you can’t get there all at once.  Chemo is a direct assault on your entire body just to kill the beast.  And, from what I hear, it’s helping. 🙂   You. Are. Winning.

Feeling like you’re never going to get through this is pretty normal.  There is nothing like chemo that I can think of in 30 years of nursing that compares. ( nursing school -2 yrs , working as an RN -20 yrs , and the last 8+ as a patient on disability -I still keep my license to keep my own butt going).  I’ve had a lot of medical stuff, over decades.  And chemo is the hands-down winner for “WTH just happened to me?”.  😮   There are no clear ways to explain how it’s going to feel (and it’s different for everyone).  But,’ lousy’ would be a vast improvement much of the time.  And you can get through this.  Your body can handle this treatment.  You will feel better.

In the meantime, look out of the window (or find one that has a view), and just look at  the trees and birds, the clouds and sky, the people walking around, and the ones taking care of you.  Watch something goofy on TV (I lived on ‘Funniest Home Videos during the first 6 weeks of being in isolation for the leukemia- and I’m sure the nurses thought I was a bit ‘touched’ when howls of laughter would come out of my room).  Find things that make you happy in the moment.  No need to be elaborate- just what makes you happy right. This. Second.  Tomorrow will take care of itself.  Yesterday is gone (though those were some great GF almond cookies Carol made last Christmas Eve !!).

Take a deep breath- and remember you’re still here right now.  And you’ll have the last laugh in the end.  But until then, feel free to cry, grieve, be depressed, miss being at work (that was a really hard one when I ended up on disability- it’s not like retiring when you PLAN on not working, but it’s like it’s TAKEN from you by some rude disease), laugh at silly stuff, and  deal with whatever else is going on.  There are no wrong ways to do this- other than to just get through it.  And it’s all temporary.   Overwhelming, but temporary.

You can do this, dear cousin.  I’m in your corner %110.   And I know there are so many who are there in person and spirit that wish nothing but the best for you. You are loved.  ❤

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.

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

A Summary Of High School

I’ve been thinking about this on and off, and I’m sure there’s more rattling around in my thick skull than I can fit in one ‘basic’ length blog, so I’ll start with the basics !  I went to a school that was, at the time, a school where over %70 of the kids went on to college. (Now it’s a pit, from what I’ve heard). There were many opportunities for advanced placement classes, and because of the number of kids in school, a very long 10-period day to ensure all kids had the chance to get the minimum 5 classes in each day- at least during my first two years- then I think it dropped to 8 periods in a day and I was expected to keep busy in all of them to get ahead. My dad was the principal of that high school. That wasn’t so bad on some levels (ride to school each day, didn’t have to carry my books home on foot, there if I needed lunch money), but on the other hand, I never knew who actually wanted to be my friend, or just wanted to get some message to my dad. I’ve got yearbook signings that tell me to “tell your dad….”.  That was never received well. My suggestion to those folks was to go talk to him themselves.

My freshmen year, a couple of things stand out.  I started that year when I was 13 years old. I was always younger, as my birthday is in November. I was used to that. The second thing that happened that year was the murder of my figure skating coaches’ six children by her husband on January 7, 1978 (Google: Simon Peter Nelson).  I had no way of knowing how to cope, and the overall message of that whole thing was if parents get mad at each other, kids can die.  I’ve never stopped wondering how my coach managed to carry on with life. I saw her a few times after that when she returned to the rink; then she sort of disappeared months later. Word had it that she’d changed her name and moved away.  I could understand her needing to leave, but I was a young teenager, and really felt connected to this coach. She’d call me when I was babysitting one of my ‘regular’ kids to see if I was ok. On the ice, she’d joke around and show me adult attention that my mom wasn’t capable of doing. She was a role model. I missed her deeply. I had absolutely no life skills to help me cope with all of that, and didn’t know where to go for help.

Another part of my freshmen year involved the residual effects of a couple of bad concussions I’d gotten in eighth grade. I’d fallen off of the uneven parallel bars early in the year, and in the spring, during rehearsal for a skating show, I landed hard on the ice…that one was bad. I’d landed directly on my head- no ‘butt’ hitting first, from what I was told. My folks were in Brazil, and I refused to give the people at the rink my grandparents’ phone number (grandma would have been hysterical worrying).  Anyway, I’d begun having some nasty headaches, and what have since been diagnosed as complex partial seizures. But at the time, the testing available didn’t show anything wrong, so I was told to quit complaining. So I just shut up, but still hurt, and I was still having times when I felt spacey.  I felt completely misunderstood. And alone.

My sophomore year was relatively mellow.  I did meet the first guy I dated for any length of time, and had a lot of fun when I was out with him. We spent time on the phone in the evenings, and most of our dates involved doing outdoor sports. He also taught me to drive his Audi Fox in his church parking lot.  We’re still in contact, thanks to reconnecting on FaceBook. My grades that year weren’t too bad.  I had started dabbling with over the counter cold medications to numb the pain from the murders, and my chronic headaches.  If I looked spacey, chances are I was taking very legal, unsuspected drugs. I had also been told  I no longer liked skating…really?  I LOVED skating- but that was the way I was told that lessons were over.  I later found out that my coach and another person at the rink had approached my mom about intensifying training to get into the national competition circuit.  I would have moved into the rink if someone would have allowed it.  Another loss.

Junior year was a train wreck.  I was taking over the counter medications fairly regularly. Babysitting money bought them, and since they were legal, nobody thought to ask about them. Plus, I was known as a ‘good’ kid.  I was still not doing well in dealing with the murders, and then my grandmother died in October. She’d been sick for about nine months, and happened to die when my folks were in Florida looking for a winter condo. My other grandparents were staying with me when I got the call at school  to call my uncle at my grandfather’s house before I left school. That was kind of weird, but I complied, and was given the news over the phone in my dad’s office. The assistant principal (and a friend of dad’s) saw me, and drove me home.  I got on my bike and took off for a while. I just wanted to be away from pretty much everyone. This was the grandma that I’d stayed with for 1-2 weekend nights each month since I was a baby, and most Christmas and Easter vacations when my folks travelled during elementary and junior high school years.  My grades weren’t good after that, and since dad got my report cards before I did, there was no minimizing the damage. I was miserable.

That year, I’d started with 8 full periods of classes because of drivers’ ed (no lunch break- my mom always thought that missing meals wouldn’t kill me).  One of the English teachers who had hall patrol on the hall where my locker was knew I didn’t look good, and did a depression screening. I flunked. She went to my guidance counsellor, who went to dad.   I was allowed to drop physics, since I had to get my drivers’ license, and had my science requirements done.  I got in trouble for complaining to the teacher… I hadn’t approached her. She had approached me.  I knew to keep my mouth shut about how I felt about anything. That had been made very clear.  I didn’t have anything dreadful to say, but  I was told that because of dad’s job, things could be taken out of context, and that could be bad. So, I shut up as best I could. The depression didn’t really go away, but at least having a lunch break helped with the exhaustion, which did help overall.  Since I had to drop physics in order to be able to function that year, the plan to graduate a year early was screwed up. I’d taken US History (gag) during summer school to get it out of the way- now it was just a wasted summer.

Senior ‘year’ was just more time to be served before getting released early for good behavior.  I finally got out of there at the end of that first semester.  A week later, I was sitting in classes at the community college.  They were basically time-killing classes- philosophy and more of the hated US History. I was headed to the University of Illinois in the fall; the credits would transfer.   I also worked part time at a dollhouse and gift store- that was fun.  I’d given up the over the counter medications. They hadn’t done anything for me, and I was too chicken to try the ‘real’ stuff. I was doing better, but not enjoying much.

During the time in high school, I’d been involved in various clubs- creative writing, American Field Services (foreign exchange student sponsors), track for a brief time until I was asked to run during a meet- I was afraid I’d fail, so quit, and I think that’s it.  I was involved in any foreign language trips that were offered (usually to the Milwaukee -Wisconsin- annual ethnic festival…those were fun)…otherwise, my time was spent babysitting, and going to church activities and choir practices.  I did have a few friends from school with whom I did some things outside of school, but most of my ‘social’ friends were from church.

I did NOT want to go to the graduation ceremony, but wasn’t given a choice. I hadn’t been in class for 4 1/2 months, and life had moved on, but I had to go. My dad handed me my diploma, which was sweet, and there were a lot of cheers and clapping during that moment (now, I appreciate that much more than I did then). At the time, I was just glad it was over.  I think that the murders and my grandma’s death probably had a whole lot to do with why I was so NOT amused by high school.  Nobody really gave me a bad time about being the principal’s kid (aside from the message requests, and those were from people who wrote them in my  yearbook, not talking to me face-to-face). The teachers were OK- nobody treated me any differently, which would have been a nightmare.  I’m still in contact with my Algebra and Geometry teacher.  We’ve stayed in contact over the years.

I hear about how high school is supposed to be the best years of someone’s life.  I hated it.  I’m liking each ‘new’ decade much more than the last one. I’m so glad there isn’t some high school equivalent later in life. I’d drop out.  I’m not a social person. I hate the fake interactions.  I much preferred working my butt off as an RN for the 20 years I was able to work.  Doing something for someone who is going through a rotten time is much more fulfilling than anything in high school was. At least in my experience. I’m glad there are folks out there who enjoyed their high school years.  God blessed you 🙂

Letter to My Oncologist

First of all, I can never express enough gratitude and appreciation for what you did to treat the leukemia I was diagnosed with in 2010.  I’m thankful to God for your skills and incredible knowledge that helped to save my life.  Your awareness of the latest treatments for acute promyelocytic leukemia is wonderful .  I’ll always be thankful for that.  I often wish I had the chance to find out more about Iran from you. I’m sure you could tell me things that I’d never know from a book or documentary.  Because of you, I’m more interested in TV shows that focus on Iran, as I have respect for you and your skill as an oncologist; I want to know more about where you’re from. 

But I feel so misunderstood by you when it comes to losing the weight I gained during chemo.  Every single appointment revolves around my weight, and I’m really sick of it.  I’ve told you about my history with eating disorders, and while I’m aware that you don’t specialize in them, you must be aware of the nature of EDs.  The only time you backed off was when I was in tears trying to explain that I KNOW I need to lose weight. Nobody beats me up more than I do over my weight.  It is painful to hear it from someone who doesn’t know me aside from the leukemia.

Did you have to openly chastise me in front of the med student?  Up until then YOU had said that the weight gain was a side effect of the chemo. When I said ‘chemo weight’ and you told me “don’t you blame the weight on the chemo” when the med student was there, it was confusing and shaming. Was that for the med student’s benefit?

When you thought I was depressed, as in clinically depressed, you backed off. I’m FRUSTRATED.  You backed off that day when you saw I was upset.  But yesterday, when I had no outward signs of being bummed out, you started in again. I’m not going to keep showing up to hear about my weight  from a doctor who doesn’t deal with weight issues.  Not gonna happen. You deal with the cancer. Period.

You suggested I go to the YWCA to swim. Do you understand that heated pools trigger the dysautonomia?  I wear an ice vest to appointments, and that didn’t occur to you?  Well, I guess that’s understandable since you don’t treat dysautonomia.  You don’t know enough about me to know that I can’t walk unsupported for very far. I do OK in my apartment, but if I go to the store, I need the cart for support.  I was using a walker IN my apartment up until the day I was admitted to the hospital for that first admission when the leukemia was diagnosed. I had a partially torn ACL and medial meniscus in my left knee; you didn’t know that. It never got fixed, and I’m not sure how well it healed since it still hurts now and then. I was supposed to get a knee replacement done.

You asked about specific high calorie snack foods yesterday.  Do you have any idea how long it’s been since I had chips, cookies, cake, or candy in my apartment?  No?  I don’t either.  I don’t buy them.  The biggest treats I have are freeze dried apple slices that pack in a whopping 38 calories per bag.  Oh, that’s right- you told me to quit eating fruit.  Really?  Unsweetened fruit is a very basic food.  It’s on the diabetic meal plan I have that was set up by a registered dietician. I’m sure she got more nutrition education than physicians do (or her job wouldn’t exist). I’ve read about the basic nutrition classes that US med schools require. I’m not convinced that Iranian med schools demand much more with instructions to not eat unsweetened fruit.

I don’t need anybody to tell me I need to lose weight. Do you think I’m blind, or stupid? Or maybe you just think I don’t care and sit around eating bon bons all day. How insulting.  There hasn’t been a day in over 35 years when I haven’t considered my weight.  Are you even 35 years old?   I was badgered by my mom about my weight from the time I was six years old.  Then I took over, and equated my weight with my self worth for decades. It has been something that has haunted me for years, and I’ve worked hard to keep from letting it destroy my life. I don’t need (OR WANT) you to keep harping on me about my weight.  I know it needs to come off.

I’ve been an RN for 27 years, and a diabetic for 17 years. I know how being overweight is hard on a body.  I get it !  I’ve seen my regular doctor about it, and will see an endocrinologist next week. My blood sugars were never the same after chemo.  Is that my fault also?  I know that insulin is a problem when someone gains weight, and insulin stores fat.  I can’t not take it.  You don’t realize that I was 40 pounds lighter when I started on insulin; I wasn’t ‘fat’… somewhat overweight, but more than 100 pounds less than my highest weight. You don’t know about that, because you don’t do anything but tell me to lose weight over and over and over again.  You don’t know my whole medical history, or the daily struggles because of being disabled (I do pretty damn well, considering). You see fat and cancer.  Well, I’m in remission; maybe it’s time to have someone else follow me until the five year mark when I’m considered cancer free.  Someone else can do the yearly bone marrow biopsies.

Do you get after your obese staff members in the oncology office like you do patients?  Is that why nurses no longer go over the medication lists with me when I first get there, and why I found 16 errors on my list when I went over it today? Did the nurses leave?  Or are there techs in place of nurses now to save money?  I know that isn’t something you can control, but look around.  Don’t talk to me like I’m the fattest person you’ve ever seen.  I’ve been in your office and in the hospital enough to know that isn’t true.

I feel like less of a person every day because of my weight.  I know that’s not right, but it’s the truth. You aren’t helping that. You only let up one time (when I was in tears) because YOU had done so much to keep me alive and didn’t want me to be depressed.  It’s not about you.  I appreciate what you DID.  But what you’re doing is damaging.  I hate coming to appointments, and will continue to refuse being weighed at your office if I keep coming at all.  You did a great job with the leukemia while I was still being treated, but now, it feels a whole lot more like harassment.  Continuing to tell me repeatedly that I need to lose weight is so counterproductive I can’t even explain it.  It drives home even deeper that my weight is more important than anything else.  That is a great way to trigger something I never want to go through again. And something you really don’t know much about in my history.

I have to make a decision about whether or not I’m coming back.  I know my primary doctor can refer me to another oncologist.  I don’t want to keep seeing you three times a year just to be lectured about the obvious in a way that is demeaning and shameful.  Thank you for the incredible job dealing with the leukemia. But get back when it comes to the continued lectures about my weight.  I’m not going to do it.  When appointments are more of a sense of dread than they are productive, it’s time to hit the road.

Update: My primary doc is sending a referral request to another oncologist 🙂