Education Equalities Health Human Rights Mental Health

The Best Way Is Always Through by Hilary Long

The Best Way Is Always Through. (Robert Frost)

An ancient building in the middle of nowhere. Now it is a luxury housing development. In 1985 when I entered its austere walls I suddenly found myself in a 40 bedded psychiatric ward amongst people of all ages and experiencing the most severe forms of mental illness. My bed was at the top of the ward next to the Sister’s station. She really was a Nurse Ratchet and I had arrived into a scene out of “One Flew Over The Cuckoo’s Nest”.

There was a hierarchy. The sicker you were the nearer you were to her. At 5.45am her booming voice would awaken us from our drug induced night terrors demanding that we get up to start a day of sitting in high backed chairs in the lounge area with breaks from the monotony provided by drug rounds and mealtimes. The food was ghastly. I do recall that. And I was very scared. Once up and dressed we weren’t allowed to return to our beds or lie on them during the day. The punishing regime was a million miles away from being therapeutic. When I wasn’t pacing up and down I sat staring into space. Occasionally a nurse would come and start talking to me about anything and everything and most certainly not about anything that I was remotely interested in. The regime was strict, the care and compassion was minimal and it was a one size fits all. We were no longer individuals with our own personalities and histories. Just one homogeneous mass of people with different diagnosis of mental illness and to all intents and purposes receiving the same treatment irrespective of the disease. We were all lumped together and all we had in common was that we were all “mad”.

On 25th December 1984 I gave birth to a premature baby girl who was in an incubator and under a lamp. Immature lungs and jaundice. Every day I travelled from my home to the hospital to feed her. There were no facilities for mothers to stay with their babies. On 10th January 1985 my mother was found dead in her home at the age of 63. My mental health was already poor but this event sent me spiralling into an episode of major depressive illness preceded by an episode of mania.

Initially I was admitted with my baby into a unit at Woodilee hospital that was occupied by patients who were in recovery. A half way house between the ward and home. Soon, however we were separated and I found myself sectioned under the Mental Health Act and admitted to the ward.

Thankfully my memories are fogged by drugs and ECT. But I do recall the noise, the smell, the communal bathroom and the unpredictable outbursts from people who were pounced on by staff and frog marched into a side room to calm down. From my middle class suburbia I was suddenly imprisoned in a mad house from which the law would not allow me to escape. It was a jumble of individuals who all looked terribly sad. This gloomy building was bereft of emotions. No stimulus just unimaginable gloom. An ambience of sadness and despair. Those who could not speak sat silent head bowed. Those who could not stay silent made a great deal of noise. There was no privacy or peace. Personal property got either lost or stolen. This place existed to control minds, bodies and lives. It would not be an exaggeration to say the practices were cruel and dehumanizing. The ward was locked and there was excessive use of medication. Largactil eliminates ambition, imagination, memory and intelligence. I was prescribed a drug that left me unable to close my eyes and they moved involuntarily around in their sockets and I was unable to do anything other than pace up and down. I think it is called Tardive Dyskinesia. The treatment felt as bad as the disease.

I can’t remember how long I was there. On the day of my discharge my premmie baby toddled into the ward with her dad to take me home. It must have been at least 9 months.

I had experienced depressive episodes before. I was prescribed anti depressant medication in my teens. My second year at university was completely destroyed by illness. I had some counselling but without effect. I could never identify any causal factors. Throughout my life my dark mood has come out of the blue and with such a mighty force that there was never time to make plans or adjustments. It has a life of its own and on many occasions has almost cost me my life. And not just because of the incapacitating brain attack but also due to losing half my body weight as I ceased to be able to eat and drink. Intervention was at the same level as you might see in an ICU without being on life support. The trick really was to keep breathing.

ECT is controversial. But it works for me. I have no doubt that I would not be here now if it was not for ECT. In 1985 when I had it for the first time it was a completely different experience to subsequent and more recent treatments. During my first hospitalisation I was diagnosed with Bi Polar Affective Disorder. Unresponsive to heavy duty anti depressants and tranquillisers it was a last resort. And it is a last resort. It is not offered lightly and in my case it was with my agreement. Twice a week six beds at the top of the ward were curtained off. The psychiatrist and anaesthetist would arrive in the morning and one by one we were given the treatment. I was very frightened and dreaded it but it seemed my only chance. The side effects were a bad headache and some short term memory loss. The course was 6 treatments. I had 12 before my mood started to lift and some normal activity could be resumed. Simple things like eating, drinking, sleeping, washing and dressing and eventually a walk in the hospital grounds. It really was a small price to pay. I started on Lithium and my mood began to stabilise.

I was completely taken aback when I received my diagnosis. I was in my thirties with two children. It had taken more than a decade to find out what was wrong with me. And then its “why me?”.  Well there is no reason why it shouldn’t be me and at the same time I couldn’t identify why it should. My father had experienced some mental health issues and was hospitalised when I was a child. My childhood had its ups and downs. My parents separated when I was a teenager. There was marital discord. I have 3 siblings who don’t have a diagnosis. Nature or nurture? Genes and an inherited pre disposition? Personality type? Above average intelligence (all those creative folk with BPD). About 1% of the population get the diagnosis. I’ve not bothered ruminating about the why. I have asked and have received a number of answers some of which fits. At a fundamental level it’s a chemical imbalance that gives rise to impaired neurological functioning and more recent research suggests episodes could be triggered by inflammation. There are two types of BPD: type 1 and type 2. I’m type 2 which means that the presentation of the illness is most often severe depression with hypomania. Type 1 is the reverse. The bad news is that both are considered to be lifelong and episodes severe and enduring. It was a lot to take in. I was a parent and a working professional. One thing I did know about was stigma around mental illness and the potential impact it would have on all aspects of my life. This was long before “See Me”.

Insomnia and I mean total inability to sleep or to stay asleep; sleeping and not being able to wake up; total misery and despair; darkness visible; weight loss; inability to cry but the ability to howl with the psychological pain but without the tears; extreme fatigue; zero motivation; personal neglect; anxiety; physical pain (this has become a more severe symptom as the illness has progressed over time); inability to relate to other people including my children and the feeling of disassociation. And this was before full blown psychosis with delusions and hallucinations. Catatonia meant that I was unable to respond to the world around me. One symptom that I found awful was the feeling that I was being throttled. Apparently it’s not uncommon to feel as if someone has their hands firmly round your throat. And I wasn’t a very nice person. From silent and motionless to full of rage in seconds followed by guilt and hatred of this person who had taken up occupancy in my head without invitation and without me having the wherewithal to evict them. When I’m well I can appreciate how ridiculous and bizarre and out of touch with reality my thoughts and behaviour were capable of becoming. I can even laugh about it and see the funny side. That’s quite an achievement don’t you think? Or perhaps reading this you don’t have a clue what I’m talking about. Lucky you!

Depression. A word we throw around so easily nowadays. A noun that means feelings of severe despondency and dejection, typically also with feelings of inadequacy and guilt, often accompanied by lack of energy and disturbance of appetite and sleep; a long and severe recession in an economy or market; the financial and industrial slump of 1929; the action of lowering something or pressing something down; a sunken place or hollow on a surface; a region of lower atmospheric pressure, especially a cyclonic weather system (hurricanes start of as loose regions of bad weather known as tropical depressions). So as you can see it is more than just a bout of the blues and you can’t simply “snap out of it”.

Trouble thinking, concentrating, making decisions and remembering things were incompatible with the work that I was doing. Anxiety, agitation and restlessness didn’t go unnoticed and remarked upon. These highly visible signs of severe mental illness along with slowed thinking, speaking or body movements meant that others were more aware of what was happening to me than I was. It was there for all to see “in plain sight”. But the worst was invisible; the feelings of worthlessness and guilt, fixating on past failures or self-blame. The relentless thoughts of death, suicidal ideation and suicide attempts.

Depression has been a more enduring feature of my illness than mania and hypomania. Before I went into hospital in 1985 I did experience a period of great energy, exuberance, flights of fancy, full of ideas and a feeling of invincibility. I also spent a great deal of money and drank vodka (I hate the stuff). I also was prone to great irritation and angry outbursts with few if any precipitating factors. I recall some of my behaviour and recoil in spasms of embarrassment. The inability to exercise any self control, judgement or self regulation is truly awful and has dreadful consequences. People like me didn’t have brushes with the law and end up occupying a police cell charged with breach of the peace. I should have been in hospital not sleeping on a mattress on the floor beside a toilet. But that is what severe mental illness does. It destroys you and your integrity as a person and replaces you with someone who you loathe and despise. Someone who was close to me at the time remarked that he preferred me depressed than high. More manageable I suppose. And that is what happens. You become infantilised and treated like a child and often without much empathy and compassion. Depression and mania two sides of the same coin.

After my third child was born the psychiatrist was outside the delivery suite to congratulate me and immediately prescribed lithium which had needed to stop whilst pregnant.

I have become much better at identifying a potentially dangerous change in my mood although I am still inclined to leave it a bit too late. Often someone else has noticed something is wrong before I do. The paranoia I experienced meant that the people who were trying to help me seemed like they were conspiring against me. I always ended up being sectioned. If you are out of touch with reality you are unlikely to voluntarily go into hospital. One day I went to pick my children up from after school care and was met by a police car. Earlier I had attended an outpatient appointment in a highly distressed state and had managed to get out of the building. The section papers were waiting for me. This time it was not the old asylum Woodilee. It was a new hospital in the east end of Glasgow called Parkhead. I was taken to the acute admissions ward and put in a single room under 24 hour surveillance. 72 hour section for assessment. 28 day section for treatment. 6 month section for more treatment. When I was discharged it was with a community treatment order which meant I could be recalled at anytime. I hadn’t committed any crime. I can’t remember how many times I was readmitted.

At the peak of my anxiety and depression my biggest enemy was the unhelpful voice in my head. The constant “chatter” was a stream of negative thoughts on a continuous loop. My inner voices were just a bit too loud. Negative emotions are ok in small doses but mine were running too high. And they did not stop even when I did manage to fall into a fitful sleep. Introspection can do more harm than good. Which is probably why I have found “talking therapy” unhelpful, and CBT. It’s not good either to avoid emotions. It is more about stepping back. The noise was paralysing. The task was to get some distance, step back, get some perspective, widen the lens; quieten that inner voice. Ruminative thoughts can take hold of us and destroy our happiness.

Back to Parkhead. Mixed sex wards. I am totally opposed to them. People should be cared for in an environment that makes them feel safe and keeps them safe. At least in prison I wouldn’t have had to put up with that.

This time it was a very long haul. And interestingly apart from the hospital building and location nothing had changed since 1985. At least at Woodilee there were acres of green space surrounding the hospital. At Parkhead once you were allowed an escorted visit outdoors only the Parkhead Forge Shopping Centre beckoned.

Quickly I became immersed in the general emotion. I found the place grubby and frankly disgusting and yet I didn’t want to fence myself off. I gave myself over to this communal sense of humanity. I wanted to be part of it, to experience it. There was a desire to remain aloof and to protect my privacy and at the same time the urge to be like everyone else. To belong to the madhouse and abide and suffer together. Do psychiatrists ever find themselves in situations like this?

Everyone seemed so miserable, so little like human beings any more. No hope or expectation. Captured and defeated that is how I felt. Too ill to care and too apathetic to oppose the oppression.

I am highly attuned when depressed and very sensitive to the world around me and the people in it. I can hear things that others can’t hear, notice things others don’t. This can be overwhelming if the sensory environment is hostile. The environment that I had been sent to against my will was very hostile and it had too much in it for me to process. The noise, the smell, bright lights, blaring TV and humans wailing or getting very angry. The occasional physical confrontation. Shouting, swearing. How long would my psychiatrist last without reaching sensory overload? Many of us find peace in nature. But here there was no green, no trees, no sky or sunshine to look out on in the middle of Parkhead. And even if there were, the windows were filthy.

The world rejects us as we are. We are incarcerated for our own protection. We are much more likely to harm ourselves than to harm others. Others are more likely to harm us. The rejection and the stigma exacerbates our conditions. The world tells us we are wrong. We are pathologised and many try to fix us. Often we are forced to mask who we really are, to hide our pain so that other people can feel better around us. No wonder they have to run advertisements and campaigns to encourage us to speak. They even have to ask others to #seeme and offer #breathingspace.

“Happiness in intelligent people is the rarest thing I know”. Ernest Hemingway. (Ernest Hemingway died by suicide shortly after an ECT treatment).

This time ECT was less traumatic. The last time I had it in 2011 there really was nothing to it. The one thing that it has had in common over two and a half decades is that it works. I’ve had it as an outpatient too.

My most recent episode of depression I was treated at home.  Reflecting back I appreciated why I previously needed to be in hospital. When you have a family (I became a single parent in 1989),and a full time job and have to do everything including making decisions about your children the home is not the best place to recover. I did need to be away from all that. Now that I live on my own I can stay home as long as I’m allowed to do so. It is a much nicer place to be poorly and to get better. And the support I received from my CPN was excellent.

I have been very fortunate to have worked in the public sector. The stigma is alive and well there but at least I had job security and sick pay. I did receive a letter whilst I was in hospital telling me that I was in breach of contract (not at my work even though they had a sick note). I was interrogated on my return to work in a manner unbecoming to a colleague in Education. I never revealed my diagnosis when applying for jobs and I would advise others in my situation to do the same. Even with the Equalities Act and “protected characteristics” and “appropriate adjustments” prejudice and discrimination stalks the corridors of institutions including those that should be some of the most enlightened in the world.

A pandemic is raging across the globe and we are in lockdown. Apart from the public health advice that is being beamed constantly into our homes to suppress the spread of Covid19 there is also a great deal of talk about people’s mental health and things we can do to protect ourselves and improve our general health and wellbeing. Scotland is the “sick man of Europe”. As a nation we have an unenviable rate of deaths from suicide and from drugs. “Deaths of despair” as Harry Burns described them. Being an introvert has been my saving grace. But then I’m retired with a pension and no mortgage or dependents. I feel immense gratitude for my situation when I see the destruction of people’s (especially young people’s) hopes and dreams, livelihoods and relationships. The Covid death toll today (26/1/2021) reached 100,000.

Over the years I have developed some strategies that work for me. I have an advanced statement regarding my wishes in relation to future treatment and I have a care plan that includes an early warning signs list. One significant difference I have experienced over the years is having more of a say in what happens to me. I feel listened to and consulted. I am very aware that isn’t everyone’s experience. I have an unfair advantage. I’m white, middle class, articulate and educated. That really isn’t right.

“I became insane, with long intervals of horrible sanity”. Edgar Allan Poe

The expectation from the medical team was that my mental health would deteriorate during lockdown. But on the contrary it has been pretty stable. When unwell well meaning people treated me a bit like Eyeore. Invitations to socialise, encouragement to get out and about. Go to yoga, pilates, mindfulness they said. I have done some of these things not because I thought they would be therapeutic but because I didn’t want to be seen to be not helping myself to recover. I also value my friendships and there are only so many refusals/excuses you can make before the invites stop. Lockdown and restrictions on movement and activities has worked well for me in the main. I can enjoy the company of one other person outdoors and I love walking. In the peace and quiet of a green space I can converse more easily and meaningfully. I have always been useless at small talk, hate noisy places and loads of people crowded into a confined space. This enforced slowing down, no forward planning, creating a structure to the day that works for me and no one else, not feeling guilty if I’m not making an effort and being allowed to shut out a mad and intrusive world has delivered peace of mind. I know it hasn’t reaped the same benefits for many others with mental health issues and it has exacerbated some people’s conditions and for many it is their first experience of mood disorder, anxiety and depression. On a personal level I am dreading the return to “normal”.

Everyone experiences things differently even if they have the same diagnosis. Mental illness is no different to physical illness in that regard. And it’s not a competition. Even mild disorder can impact on quality of life. In some respects I could imagine that persistent low mood with no major ups and downs, a life devoid of colour, a monochrome existence with the added disadvantage of the “pull yourself together, give yourself a shake” brigade would be worse than looking and feeling and behaving in such an obviously unwell way that people are rushing to intervene even if it is in ways that you resentfully resist. So I am grateful for my bi polar 2 diagnosis. I’m taken seriously and not dismissed with a contemptuous “we all feel like that sometimes”. No we don’t and those that say that never do. If they did they would show more empathy and compassion.

This week I will be 69. I received my (official) diagnosis 36 years ago. What saddens me most is that treatments have not progressed in line with the patient experience. Psychiatry remains the Cinderella service within the NHS. I imagine that it is not a very popular discipline. Patching people up and getting them to a stage where they can resume and sustain some acceptable (to them) quality of life is sometimes the only realistic goal albeit an admirable one. That revolving door must be a difficult thing to reconcile with. I’ve gone through 6 psychiatrists. And the problem is I know more about this disease than they do! I have mellowed with age and although episodes of depression are severe they appear much less often. I still don’t respond well to medication in spite of some very creative and thoughtful combinations of pills. It’s a bit like the virus. It mutates or rather it finds innovative ways of interfering with my neurological pathways. Winston Churchill referred to his depression as his “black dog”. It kind of sits there waiting to pounce.

Four years ago this week my son died of brain cancer. He was 37. I mention it because the expectation was that this dreadful event would trigger my depression. It was a very cathartic experience. I had all the stages of grief as are well documented although not in the prescribed order. For 11 months I was overwhelmed by sadness, loss, anger, guilt and just about every emotion that could possibly be imagined. I cried a lot, like every day and in unexpected places. People close to me were at a loss to know what to say. (We are terrible at dealing with death in this country). Some thought mentioning my son’s name would catapult me into paroxysms of terrible despair. He became a non person. This grieving was normal and natural and continues to this day and will forever although I don’t dwell on it as much. Grief doesn’t last forever. Love does.

Some people do become severely depressed following a traumatic event. But for me severe depressive illness and grieving are two entirely different things.

“You normally have to be bashed about a bit by life to see the point of daffodil, sunsets and uneventful nice days”. Alain de Botton

Recently I went for a walk around Gartnavel Royal Hospital in the west end of Glasgow. It is a psychiatric hospital that specialises in adolescent psychiatry. R D Laing was a practising psychiatrist there. It’s a very imposing and handsome building. Originally it was the Glasgow Lunatic Asylum and patients apparently arrived by horse and carriage under the impression that they were going on holiday and staying in a stately home! Back then the grounds would have been extensive before the emergence of the suburbs that now exist around about it. The grounds were used for agriculture and patients worked there. There is still a “healing garden” and the trails are lovely providing a panoramic view over the city. Woodilee had extensive grounds too that were used to provide employment. The old Gartloch Hospital in the east end (now luxury housing) also provided green space. These establishments were closed down in the 90’s as Care in the Community replaced hospitalisation. Today “Green Prescriptions” are becoming popular to improve people’s mental health. Perhaps that is why the old asylums had so much green space or was it a way of hiding people away? Out of sight out of mind. I must say I find being in nature extremely helpful for a troubled mind. I thoroughly recommend it.

I would have preferred not to have been diagnosed with BPD. I resent the loss of so much time. As I become older I resent it even more as time is running out. However, I am very grateful for having been able to hold down a job and have a family. I also recognise that many of the aspects of my work that I excelled at can be attributed to the illness. Energy, enthusiasm, creativity, eccentricity. And kindness. It’s spoken about a lot nowadays. For me it is not smiling sweetly and not causing a bother. True kindness is sticking your neck out and calling out injustices. Discrimination against people with disabilities (especially those that are “invisible”) has made me furiously, ruthlessly kind. I listen more deeply. I have confronted my demons. I think differently. I have made new choices and created new ways to live my life. I’m not infallible and that’s ok because none of us are. And I am not defined by this disorder. There is much more to me than that. I’m resilient and perhaps most importantly of all as an adopted Scot I have embraced the good old fashioned Scottish stoicism. Stoicism is much underrated. And if you’ve taken the time to read this some of those of you who know me may well be thinking I didn’t know any of this.

Hilary Long

Abbreviations

BPD. Bi Polar Disorder sometimes known as Manic Depression

ECT. Electroconvulsive Therapy. A treatment for major depression administered under general anaesthetic that induces a mild epileptic like seizure.

CPN. Community Psychiatric Nurse.

CBT. Cognitive Behavioural Therapy

 

 

 

 

 

 

 

 

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