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

I Don’t Want To Need Your Help

During the 19 months I was on chemotherapy for leukemia, I had many, many times when I needed help from someone for something.  Sometimes I just wanted help, or wanted someone else to be in the room (I live alone)… but I refused to be a bother for anyone.  My dad had taken care of my dog for the first six weeks I was in the hospital, and that was huge.  My dog is my kid.  I want the best for her at all times. When I’m not with her, there’s only one person here that I trust with her.  And she loves her ‘grandpa’.

But I’m also a nurse. Granted, I’m disabled, and have been since 2004, but I keep my license and CEUs current.  It’s my license, and I worked for it.  I worked with it, and it’s something I never want to have to relinquish. I am a nurse…not I was a nurse.  I’m the one who is supposed to take care of other people.  I’m not supposed to need someone helping me.  Nursing, as a profession, fosters an absolute resistance about self-care. Nurses are punished for taking sick days (‘up to, and including, termination’).  We are taught that we don’t matter. We can have worse lab work or tests than the patients we care for, but we have to be on the clock unless we are absolutely physically unable to walk down a hallway, and a doctor will sign off on that.  That’s just how it is to be a nurse.  And that doesn’t go away.

My dad’s friends came to visit me when I was first admitted for the initial six weeks, and that was really nice of them.  I appreciated it then, and now.  Because of being on disability, and living somewhere that personifies “out of sight, out of mind” to the hilt, I never saw one of my co-workers after I resigned.  I’m in contact now with the folks I worked with  1200 miles away , and it’s never awkward to reconnect.  People here are different.  I didn’t have a usable computer until a year ago, so that wasn’t an outlet, either.  I’m so thankful for it and the ability to write what’s on my mind if I don’t want to bug anybody.

My dad would have driven me to my chemo appointments, but I wanted to seem like I was doing fairly well.  I was making the expected progress, but chemotherapy is brutal.  I had arsenic fifty times… two 25-dose cycles.  Monday through Friday for five weeks, times two. I had to be on telemetry (heart monitor) so couldn’t be at the outpatient chemo clinic, but in a regular hospital bed, and went home after each dose.  On the first day of the last week of arsenic, I had shingles, so it had to be postponed for a couple of weeks until the blisters healed up.  After that, I had a brief course of IV chemo (had to stop because of issues with my heart functioning after one of the medications) and then oral chemo (three different pills in three different dosing schedules) for eleven months.   When I was at my first outpatient IV chemo after the arsenic, there was a tornado. It was several miles from the clinic, but we all still had to hunch in the hallway until the ‘Code Black’ was over.   It wasn’t just show up and get on with things.

Chemo is really painful.  I didn’t realize that (And what do you do? Hurt for a few months and live, or wimp out and die?).  I’d  never worked with oncology patients other than when they came in for surgery, or were there for comfort care only.  I didn’t know the ins and outs of  chemo.  My mom had chemo for lung cancer (after both breasts had been removed for cancer, and before her brain cancer surgery and radiation). She never mentioned the pain, and I was living 1200 miles away, so I didn’t see it. Maybe they’re all different.  I live with chronic pain, so it wasn’t about being a pain wuss.   It’s really intense. But I wanted to seem like I was handling it all OK.  I spent a lot of time thinking about the ‘what ifs’.  Alone.

Then there were  the shots to boost my white cells.  Those  caused really bad bone pain. As in ‘nothing helps’ kind of bad.  I cried a lot after those shots; about 8-10 hours after I got them, the ‘spasms’ inside of my bones started.  I cried alone- and that’s on me.  I guess there wasn’t anything anybody could do; I’d mentioned the pain to my oncologist, but I guess I didn’t speak up loudly enough. Those shots should come with automatic Schedule II narcotics. Period. I thought my right shoulder was shot; that I’d torn my rotator cuff.  It hurt that much.  When I’d reach for tissues when in bed at night, I’d hurt just moving my arm towards the box.  My tailbone felt like I had a spike going through my skin into my bones.

All of that being said, I still did my own shopping (although I did have some things shipped from Walmart, like paper goods and cleaning supplies), which was very painful.  I did my own laundry, and basically kept my apartment up as best I could.  I’m limited anyway, but the chemo added a component that I never anticipated.  I went to my own appointments on my own.  My dad would have helped with anything. I knew that.  But for some stupid reason, I had to be all independent about the whole cancer thing.  Protect others from how hard it all was.

If I had to do it again, I’d speak  up more. I’d ask for  ‘better’ pain medication.  I needed it for the physical pain. And I got nothing but  pain of being isolated from doing this  cancer thing on my own.  My dad went through his own feelings during all of this, but we didn’t talk about it much- he’d want to know about what I found out at appointments, and did take my trash to the dumpster, which was a huge help; carrying those bags hurt a lot.  He’d taken care of my mom (and never complained) for the last 15 years of her life, minimum.  She ended up with dementia, and was a handful, but he was so good with her. I wanted him not to have to worry about me (as much as possible…he’s still my dad, and worried just because of that).  He was there when I had my Hickman catheter inserted; I needed a ride there, and home the next day.  But unless I had to have someone with me, I went alone.   And in the end, it just felt lonely.  And misunderstood, because I never said what I was really going through. I didn’t let anybody understand.  Maybe some of it ties into me hating cancer so much I didn’t want to let anybody into that part of my life.  Maybe it’s partly the “nurse thing”, and not ever having it be OK to need help, or support.  Or that I’d lived alone for 25 years by the time I was diagnosed.  I always managed.  I figured I’d manage with the leukemia as well.

SO what is the point to this whole blog entry?  A couple of things.  First, I needed to get it out there that I really screwed up having cancer. I  b-o-m-b-e-d.  I’m going to be OK, but I wasn’t OK for over one and a half years.  I shouldn’t have kept quiet.  Second, what can others do to help someone who is bullheaded?   Just do stuff.  A hot meal would have been great; granted my taste buds were a bit weird most of the time, but something bland like mac and cheese, or beef stew would have been a five-star dining experience AND not painful to cook.  Just drop off some milk  and cereal, or frozen microwave dinners that the person can make when they are hungry.

If you know someone well enough not  to listen to them say “I’m OK”, just do stuff; you’ll know what is right (but no flowers or plants if they’re on chemo and their white cells are low– the spores can kill them; also no raw fruits and veggies that aren’t peeled; if their absolute neutrophil count is OK, so are living plants and raw fruits and veggies- they will know their ANC if it’s an issue).  If they don’t want company, you’ll get ‘the look’.  Otherwise, if they let you in,  you might be the only person they’ve seen in the flesh, other than doctors and nurses, for weeks.   If you have a co-worker that is sick, don’t forget they exist.  It hurts to have everything upended, and then not see familiar people.

People want to support diseases and causes.  And that’s fine.  But don’t forget the daily life of the person you know.  Maybe all you can do is call them on the phone- that’s great !  A familiar voice is wonderful!  Or touch base on FaceBook if they’re well enough to be on the computer (sitting up can be excruciating, so if they don’t have a laptop, that might not work; I’m still working on getting one donated for a friend of mine near Dallas).  That’s easy enough, and who doesn’t like to hear from friends?  Just let them know they aren’t alone on a very scary journey.