Baby Steps... Oh, Baby- Rip Off The Band-Aid and Start Striding

Tonight was the long-awaited phone call with my therapist in New York. I had emailed him a couple of weeks ago, before I had been offered a place at the supported housing project, to inquire about reapplying to do the dialectical behavioural therapy program I left prematurely in 07. The program is pretty demanding emotionally, and requires a certain level of stability with symptoms- I was starting to spiral downwards and had to leave- the recommendation was that I entered an eating disorder specific residential program, but I didn't have insurance coverage for that so was left with no option but to return to the UK.

I don't know why I have such high hopes for this program, or why I so desperately want to return to New York and complete the 6 months. I think that I am becoming increasingly frustrated with how slow my progress has been and want something more intensive to really propel me forward.

I've written about the difference between the two health care systems before- the high hopes of my team in the US for a full recovery (like ripping off a band-aid) and the s...l...o...w... way of working here. I am under the eating disorders team and I am giving my therapy sessions my all, but I find it really hard to hold onto much hope when the expectations seem so low. I want to be FREE from this completely- to suddenly be "okay" with food, health, life. To have a job, be living independently, to not be controlled by rules and rituals and compulsions. When I was receiving treatment in the US, I was really thrown in at the deep end. Quite a challenge for someone who hasn't been in full-time education since the age of 12 and pretty much grew up in hospital. I suddenly found myself being discharged from inpatient at a healthy weight, working at Starbucks, living by myself and taking college classes. It was weird. In a GOOD way. It gave me a taste of what life COULD be like. But in a lot of ways, it's made things so much harder for me- to have that all, and lose it all.

My team now want me to take this one class for 2 hours a week and not take on anything else (work, study, etc). We set small goals each week around socialising, food, etc. It's working for me- as in, it's sustainable. I'm not rushing into things, taking on too much only to have it crashing down around me. My team seem to have learned from my past history- so why is it so hard for me to do the same?

I guess I am just angry with myself for still being so stuck in this dysfunctional state when I know there is so much more out there, and having tasted it, want it more than ever.

I can't figure out why New York represents "health" so much for me. Or why I cling to the idea that I can only truly recover if I am in America. It doesn't make sense, certainly isn't based on evidence and is only further fueling my frustration. I have been working really hard at just accepting where I am right now- both with my recovery, and the more concrete facts of where I am living, the treatment I have available to me here and what that involves.

It's really hard for me to NOT compare myself to other people. I know I am not alone in my struggles with food and weight, but I feel so inadequate to others who somehow manage to go to school, work, etc. I don't know if I am just lazy? I don't know if I need to just somehow Nike-style "DO IT" or if for me, baby-steps are the only way. I should know by now that for whatever reason, just "doing it" doesn't quite work out. It's just painfully difficult for me to accept that *this* is how things are. Not that I won't keep working towards my goals, I'm just frustrated with how long and drawn out this all seems, and whether I am making things worse for myself. I feel like I can DO all these things- I can work, go to school, eat in a restaurant, deal with whatever stress life throws my way. But only for a very short space of time. Days, weeks, months- it doesn't matter. I just haven't been able to sustain things for any significant period of time without falling to pieces. Again and again.

Anyway... Back on topic. The outcome of the phone call was that the program doesn't think I am stable enough to return at this point for various reasons. This is just bizarre to me because my team here are perfectly happy with how I am doing/the way things are going. I WANT to try things here with moving into my apartment, carrying on with the small goals, and if TIME wasn't an issue, I'd be happy to do this and reapply for the program when I can stand up and say, "that was where I WAS, this is where I AM and I am ready to take it to the next level". BUT, I only have insurance in the US until October so it DOES feel like a "now or never" thing. Because it IS. I know that I am working towards that place where I can proudly say, "this is where I am NOW" but it doesn't feel like progress because I'm not there yet.

Less Choice, More Choice...Whaaat?

Some of my decisions have been made for me- for now at least.

Things in London aren't going to work out. So my choices are staying in Edinburgh, or returning to the US. I have a lot to consider. This afternoon has been spent on the phone to insurance companies and programs in the US, and various organizations in the UK.

I like the attitude of providers in the US. Health care is not easily accessible, but the treatment I got, for the most part, was worth fighting for. Sure, some of it was crappy beyond belief, but they all hold the same basic idea that EVERYONE can make a full recovery. I'm looking into various types of programs. I don't know if I want to commit to a long-term program right now- I have nothing stopping me, but I guess...well, I'm scared. I don't know if 3-5 weeks of 4 hours a day is going to make much of a dent in my behaviours/mindset and may make things worse? I don't know.

IF I stay in Edinburgh, the plan is to see my therapist weekly and be monitored by my GP. I've hated the place I go for therapy since I started there. Something about it just really rubs me the wrong way- perhaps the stark contrast between the attitudes there and the attitudes of that in the US. Being written off as a lost cause/hopeless case at the ripe age of 23 when I first went didn't sit well with me.

Staying in Edinburgh means I don't have to get well. I don't have to fight my eating disorder, don't have to face up to my demons and *gasp* move on with my life. I can drift from one low-key job to another, occasionally be admitted to hospital to stabilise, maintain the bare minimum "safe" weight. Forever. And that is what my life would look like- therapy, blood tests, meaningless/boring jobs, the social isolation that anorexia brings. It's a pretty bleak prospect.

The US is somewhere I HAVE to be healthy. It's just not negotiable. And that is what has appealed from day 1- I want to be there? I have to be doing well. No "maintaining the bare minimum weight", no staying in bed for 3 days or walking for 12 hours a day. I have to be eating properly, have to be working, have to be healthy. It works for me because I have so much social support and love the lifestyle/culture/family I have there so much that I desperately WANT to be a part of LIFE. Not like here where I honestly don't give a rat's a** about anything.

I am trying to think of ways of bringing what I love about NY to the UK...it's hard. Things are different. People are different. Life is different. I know that peace/happiness/whatever starts from within, but I also believe that environment is where it breeds.

So many things to think about right now.

Meanwhile, I need to figure out how the hell I am going to add in a tablespoon of peanut butter to tomorrow's meal plan...(and yes, I am aware of the fact that eating 90 calories worth of peanut butter should be the LAST thing on a 26 year old's mind).

Who Decided To Call This A "Funny Farm"?

I am feeling strangely disjointed right now. Everything is still up in the air which is driving me insane- I obsessively plan everything as far in advance as possible, from where I am going right down to what I will eat. I like details, like consistency, like to be in control. So many things are in other people's hand right now- hands I don't trust, and hands I want to slap away from keeping hold of *my* future.

I'm getting confusing messages from various people regarding my treatment, living options, aftercare, relationships. Different people say different things and I'm not even sure who is in charge or who is doing what. I should be doing it. But I can't. This is all tied up to bureaucracies (seriously- right now various organisations are literally arguing about whose responsibility I am for housing since nobody is able to determine my last fixed address). Where I live affects where I go for treatment. Where go for treatment affects outcome. Sad, but true. The NHS is AMAZING purely because it exists, but it truly has earned it's nickname "the postcode lottery".

But I digress.

I am grappling around, making lots of phone calls, speaking to lots of people- trying to figure out what my options are and what the best course of action is right now.

Meanwhile, I am still in hospital. There is nothing funny about this farm. From the second my eyes snap open at 5 am, I am surrounded by noise. One patients singing at the top of his voice as he paces up and down, banging the walls. One person darting around muttering to nobody in particular, then yelling out, "do you understand?" repeatedly. One patient who laughs hysterically 24/7 (yes, even in his sleep), then there are the ones who appear relatively "normal" then mid-conversation you realise that the topic has switched to something so bizarre you are suddenly reminded exactly where you are living. Needless to say, I spend as much time going out for long walks as possible. I am walking about 6-7 hours a day- I go out, keep my head down and pound the streets until I am too tired to think anymore. I can't "think" because my mind takes me back to the same thoughts, the same feelings, the same desperation that led me here in the first place. This is a REALLY difficult place to live in. It's even harder to think that whilst I may not talk to imaginary people or hold a belief system that the world is conspiring against me, I am enough in need of help that the same doctors treating the other patients, deem me too much of a risk to myself to leave.

I just want to feel better. This isn't a healing environment. My eating disorder runs rampant, my emotions are wildly out of control, I can't sleep and with each passing moment, feel more and more out of touch with reality. But I both need and want help. I know the steps to take, and I am NOT just making excuses, but I need to be in a different environment before anything can even have the potential to change. My priority right here and right now is getting through each hour. Between the chaos on the ward and the chaos in my head, it's proving difficult. But I am managing. Somehow.

It's Really Happening (what is?)

"Overwhelmed" doesn't even begin to cover it. I am moving this week- most of my stuff sits in an apartment 500 miles away, and I'll be joining my possessions on Friday. I want to say that I am excited, happy, relieved...but this feels oh-so-wrong. I moved away from London for very valid reasons at the time, and moved to somewhere I believed would offer some different opportunity. To summarise, it's been a disaster from the word "go". My original reasons for moving, in hindsight, stemmed purely from fear. I was running. Not *to*, but *from*. I've been running ever since, and now am going back where potentially, I could be forced to face those demons once again if I don't tread carefully.

I know how the system works. Scotland has been a bit of a minefield for me, New York even more so. I've been out of my depth when it comes to certain areas, and it's shown. The stress eats away at me, little by little, until it has eroded half my body and half my brain and what's left is a vacant shell where my soul once lived.

London NOW feels threatening. I know it too well. I know where the obstacles are, and am a "pro" at avoiding them. I'm talking in terms of medical treatment here. I know the system better than I know the streets. Where to live, where not to live. When to show up to appointments, when to cancel. This could well work in my favour, unless my negativity is running the show, and knowing me/my patterns/my eating disorder, it's oh-so-easy to become a statistic when 1) stress from moving and college starts to become consuming, and 2) I know how to avoid doctors/treatment if I choose to.

I'm scared.

Scared because I know that things aren't going well. I eat my oatmeal, smile, say "good morning" to my family and go off on my adventures for the day. I pretend everything is fine. I want to go to college, I want to see my friends, I want to go back to dancing, I want to be healthy, I want LOTS of things.

But really, I don't. I don't want it ENOUGH. I am scared of eating, scared of breaking my rituals, scared of giving up my obsessions. My heart thumps erratically in my chest, my heart pounding against what feels like a boa constrictor around it. Every breath hurts. I'm tired, I'm dizzy, everything hurts. It's hard to think straight because I'm so exhausted, cold, confused.

I feel like a wimp for 1) feeling like this, and 2) verbalising it. I have said it on my blog, but I would never say it out loud. How weak of me to not be able to take the blows I throw myself. How pathetic of me to complain about something purely self-inflicted.

And yet I don't know if it IS self-inflicted. I'm not doing anything overly disordered. My body is perhaps just weakened, or maybe everyone feels like this and it's normal after all?

It's been a draining last 24 hours. I'm sure I'll feel differently tomorrow. If not, I can mention it to my therapist, who will confirm that yes, I am indeed, absolutely fine and should shut the hell up and get over myself.

Memories...

Friday will be exactly eleven years since Jenny died. I rarely talk about her, but not a day goes by when I don't think about her.

Backtrack a little- Jenny was several years older than me, and one of the "cool kids" at synagogue. I hung out with the kids my age, and we all looked up to the slightly older ones (you know how it is when you are 4-5, and there are these oh-so-cool 9-10 year olds!) My family stopped attending synagogue for various reasons, and carried on with our day-to-day lives.

Fast forward to me, aged 14, when I was admitted to the local hospital for treatment. Jenny was also a patient. We grew close again- her attending each day, me returning to the ward after "program" to sleep. We talked a lot about our similarities between our families, our upbringing, the daily battles we faced. Her eyes sparkled at her excitement about recovery, her determination to get well shone through her frail appearance. As time went on, due to Jenny's family circumstances, she hit a bump in the road and started to go downhill. She was admitted to the same ward I slept on, and our bond grew stronger. It was heartbreaking to see her struggle, the twinkling in her eyes start to fade. Still we talked, made grand plans for when we were well and out in the real world.

A couple of weeks later I was transferred to a unit 300 miles away, leaving Jenny behind. She made me promise that I would never stop fighting for recovery, that I was worth it, that I was stronger than this disease. I kept the card and picture she gave me by my bed and thought about her all the time. A week later, I got called into the nurses station to take a phonecall. I took the phone, and it was one of the nurses from the hospital Jenny and I had been in together. She didn't have to tell me. I knew. I remember falling to the floor, and I remember crying for what felt like months. I don't remember much else about the days/weeks that followed.

All I know is that a part of me died that day.

Eleven years later and I am plagued with guilt that I didn't keep my promise. Every time I use some kind of "symptom", I get flashbacks of Jenny and I huddled in the hallway of the hospital- me, promising that I would stay strong, that I would beat this. I hear her voice, hear the excitement about the prospect of being well- it comes in flashes, and I want SO badly to live the life that was taken from Jenny. I feel guilty that I survived and Jenny didn't. That I wasn't there for her during that last week. That I didn't DO something, that eleven years later I still don't know what I could have done.

I am angry with the hospital for letting her die. Angry at the doctors for standing back and watching someone so special just deteriorate without intervention. I am angry at the healthcare system and lack of resources in Scotland that took away the best friend I have ever had, and continues to to take the lives of others. It is so unfair, so cruel, so wrong.

I don't know quite what I believe about the afterlife, but I hope that Jenny is at peace with her demons now.

Jenny... I miss you.

The differences between the US and UK health care systems

I have experienced health care on both sides of the pond, so whilst some may disagree with my opinions, I believe them to be valid.

In the UK, it's all about maximising resources, saving money, damage control/harm reduction. I've been shunted from program to program, deemed "unresponsive"/chronic and had several years of "treatment" where the primary focus was on living with my eating disorder. I was taught how to maintain a low weight in as stable a way as possible. I was taught how to minimise the damage I was doing to my body. This, to me, was great. I was tired of living in psychiatric units. I was tired of being held down and force-fed, tired of my body being controlled by others. Once I turned 21, the focus changed and in order to prevent wasting more money on treatment I wasn't making use of*, it was all about helping me to avoid medical crisis after medical crisis, and manage my condition in the community. This is fine and well. Everybody knows that eating disorders can kill people. What people don't know is that if it doesn't kill you straightaway, you live, day in and day out, within a vacuum- nothing is as important as food and weight. You think of nothing else. You have no social life because your malnourished state is causing such obsessive thinking that you cannot hold a conversation, never mind relax over drinks with friends (friends? oh- did nobody tell you that you lose them all? They have lives to live that DON'T revolve around calories/numbers). Anyway. Back to my point. I was being taught how to stay entrenched in my illness without really realising the impact this would have. It wasn't just a case of being a normal functioning human being who happens to be rather thin. It was more a case of being left to my own devices knowing that there would be some intervention only if and when I should happen to collapse in the street and somebody calls an ambulance. Fair enough. The National Health Service has spent a fortune on my treatment- money that maybe could have been better spent elsewhere. Maybe on something other than just refeeding. Or on a program better suited to an anorexic 15 year old than a juvenile detention centre (after one doctor washed his hands of me and nobody knew quite what to do with this child who would just not be normal dammit)

So, yes. I've had my fair share of NHS treatment and quite frankly, would not be alive today without it. But...there's always a but. Maybe I am being a little too 'Pollyanna'-ish about it, but I still believe that there is a better life out there for me. I don't think I have to settle for what I currently have. I don't want the life that the NHS has mapped out for me- several more years of outpatient weigh-ins/check-ins, doped up on psychiatric medications, too stuck in my own world to hold down a job/live independently/have a *gasp* life.

This train of thought was what prompted me to try a different approach. The NHS was (and remains) a closed door in terms of actual help with a true recovery for me. I looked elsewhere and was very fortunate to qualify for a research study in America. I do consider myself VERY lucky to be offered a place on this program. The treatment was free because I participated in research. From the word "go", it was clear that they KNEW recovery was possible. They weren't even going to entertain the idea that living with an eating disorder was an option. No sir-ee. This was a whole-hog "refeed/fix the brain/eat like a normal person/you can do it" program. I got to a healthy weight for the first time in about 6 years. I ate pizza and French toast. I started a part-time job, a part-time class at university, met new people...got a life. Things were starting to take on a new and exciting form for me.

I graduated from the program, and for follow-up, attended a world-renowned treatment centre's day program. Don't let the name fool you kids- you don't always get exactly what it says on the label. This was a "wham bam thank you ma'am" program. You paid a rather disgusting amount of money just to be scrutinised as you cut your sandwich into quarters, and sat in endless hours of silence as the groups were facilitated by robotic clones who seemed brainwashed into saying little more than, "that is inappropriate conversation" should we even dare to utter the slightest reference to food/weight/body image/celebrities/men/media/fashion (hence the silence- you can only talk about the weather for so long!). The first signs of struggling, you were issued a "contract"- break the contract and you go to a higher level of care (oh, and what do you know? they even OFFER a higher level of care, at...what a surprise! An even higher cost!) I didn't technically break my contract, but it came to a point where I had "saturated my time on the program". Their explanation was that I would not get more benefit from the delights they offered. The reality was that I was paying the sliding-scale fee, and after a certain length of time, they wanted to give my space to somebody paying the full cost. Fair play. Business is business.

WAIT! NO!

Business should not be *just* business when it comes to health care. What about the patient? Where do they come in? Isn't their health a priority? Nope. Not if they don't have the money or the potential to sue at some point. You have enough to pay for treatment but not for a lawyer? You're home free. You have semi-decent insurance? They'll take you, all concerned and caring, then 3 days later kick you out when insurance pulls out. All of a sudden you go from being "in desperate need of help/support/observation", to "there's no more money- pack your bags". Seriously. I've seen it happen.

Americans may read this and not bat an eyelid- it's the system they know. I was shocked. The system, in both countries, is fatally flawed. No, I am not being melodramatic here. I don't even want to imagine how many people die each year as a result of the US money-making machine that they (almost laughably) call "Health care", and the British system, whilst free, is almost as bad with the "postcode lottery" and "care in the community at any/all costs" approach they take.

Either way, it's not your illness or symptoms that determine what kind of treatment you get. Whether it's an eating disorder or something completely different (cancer, diabetes, a broken bone), in the UK it's about spending as little money as possible to stop you racking up a huge bill to the Government. In the US it's about what insurance you have and whether that person sitting at the admin desk in the insurance office decides whether or not today is your lucky day (I wonder if they use some kind of magic-8 ball system? Or a spin-the-bottle type game each time a claim comes through?..)

Don't get me wrong. There are huge benefits to both systems too. I have seen some excellent doctors in both the UK and US. I've had some superb treatment both sides of the pond. I've met genuinely caring and compassionate people who really DO want to help patients. But they sadly seem to be few and far between.

Just my $0.02. feel free to disagree.


* quite how you make use of being held down and having someone stick a tube up your nose, I don't know