"Invisible illnesses": turning judgement into compassion

The last few months for me have been swimming in illness. 

Not "hardcore" illness that have you in a wheelchair or agonising in bed or in hospital, or losing your hair through your treatment or losing a significant amount of weight, all of which I am sure you can't understand unless you have lived through it yourself or through someone close to you.

Not completely ill, not completely well

I feel that it is easy to think in black and white terms and judge that, because an illness is not visible, the person is actually well. But what about the in-between, the shades of grey, the people who aren't exactly completely unwell but aren't completely well either?

Don't get me wrong, I wouldn't trade what I have for any of the above, but if you see me for a couple of hours in the day and I am joking and laughing with you and am seemingly doing "normal" activities, do you assume that this is how the other 22 hours of my life are like (or at least the waking hours)?

My personal condition 

Let me share some of my personal suffering.

I was diagnosed with uterine fibroids 2 years ago, which apparently 70-80% of women have, with varying degrees of symptoms. Many don't have any symptoms or only mild ones, but many others do.

Mine cause heavy bleeding. My periods last for 2 weeks every 4 weeks, and during each monthly period, I lose around a litre of blood. It is the equivalent of donating blood 4 times per month, every month of the year, for 2 years (so far). Sometimes it means going to the loo every 15-20 minutes because the blood has soaked whatever protection you are using.

If you have the same issues and want to know what my strategies for this are, please let me know.

The result is that my body can't produce blood as quickly as it is losing it, and my red blood cells count is very low, putting pressure on my heart to pump faster to make the fewer blood cells carry oxygen around my body. The body uses iron to produce red blood cells, and my iron stores are low: this is anaemia.

Getting on with it

I spent the first year and a half of these 2 years working 50-60 hours a week in my accounting job, ignoring my symptoms as all the doctors originally dismissed my condition as common and benign.

On the doctor's prescription, I took iron supplements to help my body produce red blood cells and just "got on with it".

I felt exhausted most of the time but I got used to it. 

Six months ago I sighed in annoyance when I realised that when I lightly exerted myself, such as climbing a small set of stairs or walking to the end of the road, my heart was pounding and palpitating, lactic acid was pumping into my legs and I felt faint. I thought of the amount of work I had and my strategy to tackle my new project at work, and thought I should quickly check it out at the doctor's and get back to work.

It turned out that my red blood cell count level was a third of the normal level and I was at risk of a heart attack. The GP rang me at 7.30pm on a Friday and told me to pack a few things and go to A&E to have a blood transfusion. 

My response as I was cooking dinner and looking forward to chilling out after a long week was: "can this not wait until tomorrow?"

How's that for "getting on with it?".

Burn out 

After my blood transfusion (over 3 days at the hospital of waiting, chasing for my treatment, sadness looking at other ill women in my ward), and a few more weeks of trying to get back to normal, I realised that I had actually burnt out, and that the acute anaemia was how my body was telling me it had had enough and forced me to stop.

Once I gave in to the need to focus on my health, the exhaustion just submerged me. I haven't been able to function without at least 12 hours sleep a night. 

The blood imbalance and the deeper questions that the experience raised have triggered feelings of depression and anxiety.

Treatment 

I found "proper" care in the form of an upcoming surgery to remove my fibroids, and I am currently undergoing a 3-month GnRH (hormonal chemical menopause-inducing) treatment to shrink my fibroids in order to facilitate the hysteroscopic myomectomy surgery.

I won't indulge in useless NHS-bashing, but we do have to question why the system waits until the illness reaches an acute form to give the patient the right level of care. 

The N.I.C.E. has been encouraging patients to take the initiative to understand their health conditions and treatments in order to support their care, so I have my own copies of blood test results, and prompt my GP for any change in medication, or new blood test requirements that I may think I require. This has given me a sense of control and ownership over my health, but has also been putting more pressure for me to think proactively and chase people while I am ill.

Since I started the GnRH treatment a month and a half ago, the bleeding has not stopped. Generally, if I stay at home and do nothing all day, the bleeding will be minor. On the days that I decide that for my sanity I need to do something and lightly exert myself by taking a short trip to the shops, wheel my trolley around and carry a few groceries home, or other such light mundane activity, within 24 hours I get a backlash of bleeding equivalent to the quantity of one blood donation.

I am lucky, but vulnerable

I am lucky, that there is an end to the tunnel with the surgery in a month and a half, that my company has fulfilled its duty of care over and above expectations while I have been off work, that I have a wonderfully supportive partner and loving family and friends who are happy to see me and forgiving when I cancel plans at the last minute because I am just in the middle of an uncontrollable episode of heavy bleeding or just too exhausted to get up.

In the fewer waking hours of my days, I  am putting up with my clouded mind, my sad feelings of inadequacy for being unhealthy in my youth, my guilt for not contributing in the world while I am ill, my frustration for not being able to concentrate on simple things like light reading for more than five minutes, my anxiety and self-doubt about how I have been living my life to get to this point, and trying to find healthy outlets and healing strategies to get back on top after my surgery.

Denying our vulnerability 

The world sells to me the wonderful stories of people who had much worse illnesses in life than I have, and who beat their obstacles to become Olympic athletes and other incredible achievements. Such stories are inspiring but could also deepen the feelings of inadequacy if you are not able to measure up to these wonderful people.

I am just saying, everyone has a degree of vulnerability, and different people have it in different amounts. Everyone finds courage in their vulnerability in different ways, each person has their own version of how to "get on with it", and to sneer at others' vulnerability is a way to deny that we ourselves are not invincible.

David Whyte expresses this beautifully.

To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to be something we are not and most especially, to close off our understanding of the grief of others. 

Full passage (highly recommended reading):

https://awakencompassion.com/2014/06/05/vulnerability-by-david-whyte/

There has been a lot on social media lately to raise awareness on mental illnesses. Unless you have lived through it yourself or through a close one, you may not understand that the other person is going through hell in their mind and can't just "snap out of it".

A wonderful talk by Andrew Solomon on depression:

https://youtu.be/-eBUcBfkVCo

A few hours of normality in my day

When you see me behaving "normally", laughing and joking for 2 hours in the day, this is what I've most likely had to do to psych myself up for it: I've spent 12-14 hours sleeping, and the remaining waking hours chasing medical appointments and monitoring medication, trying to deal with heavy bleeding, finding the best way to nourish my body to sustain what it is going through, finding a useful activity for the day that is not too physically challenging, and finding healing for the disquiet in my mind through meditation, drawing, reading and just sitting on the couch looking at the birds and the trees in the garden.

And I am grateful for those few hours of normality in my day.

Compassion and love

I know that I am not alone in my in-between suffering, and I request that we all appeal to our compassion when we feel like sneering at how others should "just get on with it". Because we have no idea what the rest of their day has been like, or what hell they might be going through in their lives and their mind.

Be compassionate today, spread your love.

Do pleasures of the palate trump the yoga lifestyle?

As people are on the last straight of their Lent renouncing, I look back at my many different attempts at living life to the best that I can, and this question comes to mind: to over indulge or to never indulge? Let me explain.

I consider myself an epicurean, someone who enjoys the nice things in life and doesn't apologise for it. 

For me, this love of what life has to offer to our senses manifests itself in different ways: comfort in the house, nice toiletries, expensive make up and perfume, the feeling of speed (go karting, skiing,... never on the road of course...!), and other things, but the way that it brings me the most joy is in the enjoyment of food.

I often encourage my slender partner to eat more by appealing to his love of most things relating to Chinese culture: "Is this all you are eating? How are you going to survive Chinese banquets?". Chinese banquets are a 10 to 12 tantalising dishes affair, and there are most definitely different strategies to approach them. They need physical and mental preparation, whether your goal is to manage to eat as much as possible or to limit the damage on your waistline. My choice of goal is generally the former.

One of my favourite authors is MFK Fisher, who justifies my gargantuan appetite by talking about her "insatiable voracity" in a beautiful and compelling way.

In 'G is for Gluttony', she says: "It is a curious fact that no man likes to call himself a glutton, and yet each of us has in him a trace of gluttony, potential or actual. I cannot believe that there exists a single coherent human being who will not confess, at least to himself, that once or twice he has stuffed himself to the bursting point, on anything from quail financiere to flapjacks, for no other reason than the beast-like satisfaction of his belly. In fact I pity anyone who has not permitted himself this sensual experience, if only to determine what his own private limitations are, and where, for himself alone, gourmandise ends and gluttony begins."

As a human being, how can you not be attracted to this?

I recently watched an old Oscar-winning movie called 'Babette's Feast'. In the dull setting of a desolate and remote Nordic village in the 19th century, within a community of a Puritan flesh-renouncing sect, a French housemaid cooks a Michelin-star dinner. The tension from the petty discord in their frustrated lives is released by the culmination of a deliciously sensual meal, giving place to joy, goodwill and gracious disposition. 

I do believe that sensual repression can bring the worst out of us human beings. Look at how cranky people who are trying to stop smoking can get, but even more basically, if I were starving, I would probably be more tempted to forego my sense of morality and my respect of other human beings.

Having said that, there is a type of sensual repression which appeals to me, one that fits in a holistic lifestyle.

Two years ago, my sister and I attended a yoga retreat in an eco-friendly farm on the south-western coast of Turkey. The week-long retreat consisted of a daily programme of a very early meditation session, two 2-hour long yoga sessions, one of them being an Ashtanga yoga practice (a dynamic and physically challenging type of yoga), and deliciously nourishing vegetarian food.

My body took a beating in this violent change in regime from my usual lifestyle, to the point where I felt like crying a couple of times from pain and resentment from early rises (I am not a morning person).

My sister left the table hungry every day, but I strangely felt completely satiated from eating very little of food that I found satisfying not only to my physical needs and my hunger but also to my palate.

I hardly slept that week, yet I came back home feeling uniquely strong in my body and clear in my mind. Clearly detoxing is a real thing!

I continued on the path of early one and a half hour long yoga practice every morning at 5am, vegetarianism and teetotalling for a couple of months or so, and gradually, the cracks in my rigid disciplined routine multiplied, and I gave up the vegetarianism first, and the yoga second, in favour of too many hours spent at work (I know, please don't judge me!).

Since then I have often fallen ill, or felt physical pains that many of us who have sedentary lifestyles feel, and I have been finding myself longing for this sensation of clarity and strength that I experienced as the result of a somewhat sensually-negating lifestyle.

Perhaps my perfectionism makes me devalue any experiences that aren't hyperboles. The ordinary is less appealing than the sublime. Damn the media and their advertising, their overuse of "Amazing!", "Wonderful!" and other superlatives that suggest that I shouldn't settle for anything short of exceptional.

I guess I have to face the fact that life is made of the ordinary as well as the sublime, that the sublime cannot exist without the ordinary, and that consequently I must live with compromises in life that give me mostly 'good enough' health and sensual experiences, as well as glimpses of sublime experiences.

My next question then is: How do I strike this balance?

I didn't have a Catholic upbringing, but maybe I should follow the tradition of Lent, maybe that would help me strike the right balance over a year.

Maybe I should just follow a detox programme for a while.

The book by Mireille Guiliano 'French Women Don't Get Fat' illustrates how the French regularly indulge in 3-course meals cooked in duck fat and still come out looking slender and elegant. Maybe I need to get away from the schizophrenic tendency to abstain, then binge and rekindle with my French heritage.

I don't have a good answer, but the more important part of the goal for me is about striking a balance between indulging in what makes me passionate - or in a good friend's words, what keeps "the lights on" (the sublime that gives me a voice, and the accompanying inspiration) but has the tendency to keep me awake and working until too late at night and to worsen my back and neck pain from sitting in front of an electronic device, and the necessary activities and moderation that turn me off and force me to pace myself and disrupt my flow, but sustain my health.

In this endeavour, I feel that routine is my key ally. Where did I read that discipline is the enabler of creativity? 

Wish me luck and let me know how you do it!

A dream at the acupuncturist's

I like to lie down on that little bed in the little poky room at the back of the shop while the acupuncturist is reading and shuffling his papers softly. It is quiet, the air is a little stuffy, and particles of subtle and familiar Chinese herbal medicine smells hang in the air.

It transports me to afternoons in my early childhood, a time when I was living with my grandparents. 

Can you remember things that you saw and heard as an infant? I think I can. I can't have been older than 2.

My granddad would do that, turn the TV off and have the whole household very quiet for my nap time. Everyone else would have left for work or study or whatever they needed to attend to in their day. Only my granddad, my grandma and I would remain in the little flat.

I could hear and feel the love as I slowly dozed off to sleep, the reassuring sound of silence mostly, punctuated regularly by the turning of pages, a soft clearing of the throat, a brief clanging of pans in the kitchen where my grandma would be preparing a special afternoon treat for my granddad.

Sometimes she would cook him a steak, just for him, in the middle of the afternoon, when no other family member is around. 

We have always eaten very well, every meal would have at least 3 dishes displayed in the middle of the table, and enough for everyone and for leftovers. 

But that was his secret treat, her private way of saying how much she adores him over everyone else. I truly believe that food has much deeper significance in traditional Chinese culture. Many a time I was the privileged witness of the deep and private Chinese love between my grandparents.

Granddad would have that delicious piece of beef with Maggi sauce, and sometimes with a little Dijon mustard. He would feed tiny pieces to me, after dipping them in the soya sauce.

I feel a hand on my wrist. Ah. The acupuncturist is checking that I am alive. He is now proceeding to remove the needles and asks me how I feel.

I feel a bit stunned and spaced out after the session. After the cortisol and adrenaline of worrying are taken away and the Qi energy in my body is realigned, all that is left is my profound tiredness, unmasked and heavy.

My emotional attachment to soondubu jjigae (Korean soft tofu stew)

As I grew up, I was never very keen on spicy foods. I would watch my mother and brother eating very spicy curries, and biting into fresh bird's eye chillies, both intrigued and incredulous about how anyone could enjoy inflicting pain on themselves, especially in an area as sensitive and significant to me as the palate.

Fast forward to my last year of uni, which I spent in an incredible adventure in Shanghai, China, where I made friends, not with Chinese people, but mostly with Korean foreign students. 

The university was a popular destination for Korean students, and consequently the foreign student canteen served a variety of traditional Korean dishes.

15 years later, I am still obsessed with the dish I kept going back to: a spicy soft tofu stew, or soondubu jjigae.

My Korean friends made me try it the first time, their answer to my objections about my dislike for spice being that spice gives you a "fresh" feel at the same time as being warming.

I wasn't entirely convinced but I had intuitively rationalised the concept in my mind, enough to give it a try.

The first mouthful was volcano hot, firstly in temperature, being served still bubbling in the earthenware pot that it was cooked in, burning my mouth and my tongue, and secondly in spice, the deep red colour having warned me of the dangers of the experience. I looked at my friends through a tear in my eye, they were nodding and smiling encouragingly. 

We didn't have a fluent language in common, but body and sign language, and facial expressions turned out to be very effective ways of communicating our appreciation for each other and other emotions that built and strengthened our friendship.

I went back for seconds, determined to share the experience they had described, another way that I had at my disposal to understand them better. 

Sweating and gulping air to cool my mouth down, I finished my bowl of stew, feeling proud that I had conquered the challenge, but also feeling that I had understood an area of the human experience which had been closed to me until then.

The burning spice in one's mouth isn't just pain, it triggers many other things in your body: the heat, the sweat, the struggle of your mouth to cool down enough to keep going for more, as a small challenge that builds your character and makes you feel strong and winning, and the endorphins releasing into your body, making you feel awake, warm and happy.

I had this stew again and again during my stay in Shanghai, developing a stronger understanding of the experience and each time, giving in a little more to the pleasures of this black bowl of red volcano.

Today I take pleasure in this dish for all these reasons, and an additional one, which is the nostalgic reminiscence of those days of sharing meaningful human experience with wonderful people with whom I didn't even have many common words to express myself or my feelings for them.

It reminds me that the human experience transcends borders and languages, and fills me with the belief that the human race is good and that the world is a wonderful place for us to experience.