The other day I went to an informal work meeting to discuss my rather unstable health and the difficulties that may creep up in the coming months. The meeting was with one of the gentlest people I’ve met, a woman called Liz.
About 15 minutes into this meeting and as we were talking about all sorts of scenarios, Liz asked me what I wanted. Not what I wanted to do or what I wanted to plan or what I wanted to happen, but what I wanted. It was an impossible question to answer. We looked at each other until she said “Why am I asking you that? What you want is not to be ill”. I had to bite my hand to maintain my composure.
And that’s the long and short of it. The ugly truth of the matter. What I want is not to be ill. Eight years in, after struggling for years to reach a place that resembles acceptance, what I want is to wake up one morning and discover it was all a dream. It is such a contradictory place to be in, as I fully believe that I would not be the person I am today were it not for my ill health, all I’ve had to go through because of it and the people I’ve met as a result. I love my life and am endlessly grateful for it. And yet when I wake up with a temperature from yet another infection or swollen beyond recognition from angioedema or with creaking, painful joints that constantly give out all I want is to close my eyes and wake up to a reality where I am healthy, my body is dependable and my most prominent physical complaint is having a cold.
I can analyse this to death. In fact I am trained to analyse it. I can talk about how illness brings us face to face with the reality of our permanence on this earth and of our physical limitations. I can tell you health can serve as an illusion of immortality for people and illness can bring us closer to what is important in life and can force us to grow as human beings. And It wouldn’t be a lie. What is also true is that once in a while I am overcome with longing for an existence and a physical self that will never be. That sometimes I want to be able to get lost in spontaneity and not live in a carefully calculated balancing act of small disasters. That some days it feels like I’m drowning in a sea of lost possibilities and fear that’s all my life will ever be. It may be self indulgent, but it’s emotionally honest. And there’s nothing wrong with that.
William Cullen Bryant once called Autumn the year’s last, loveliest smile. For me it is also a living breathing example of permanence.
Today I’m grateful for Autumn and the incredible beauty it brings to this world!
Day 10 of the Challenge:
On the 5th of November 1605, a man called Guy Fawkes was arrested while guarding explosives members of the ‘Gunpowder Plot’ had placed in tunnels directly under the House of Lords. This failed attempt to assassinate the Protestant King James I of England by blowing up the House of Lords and replace him with a Catholic King, has been dubbed ‘Guy Fawkes Night’ or “Bonfire Night”. It is celebrated every year on the 5th of November by people around the UK.
Yesterday Dot’s nursery had organised a big celebration of the day. Older children had built Guy Fawkes effigies of straw and old clothes. Staff members build a huge bonfire. The effigies were thrown in the fire, while parents and staff recited the rhymes that typically accompany this celebration:
“Remember, remember the 5th of November
Gunpowder, treason and plot.
I see no reason why gunpowder treason should ever be forgot.
Guy Fawkes, guy, t’was his intent
To blow up King and Parliament.
Three score barrels were laid below
To prove Old England’s overthrow.
By God’s mercy he was catch’d
With a darkened lantern and a burning match.
So holler boys, holler boys, let the bells ring.
Holler boys, holler boys, God save the King.
And what shall we do with him?
Half an hour of stunning firework displays followed, accompanied by warm food and toffee apples.
It was a beautiful night, with lovely people and hundreds of mesmerised babies and toddlers! We drove back home to a sky filled with fireworks, as people in our area celebrated.
So today I am grateful for this wonderful commemoration I got to introduce Dot to this year. Hopefully we’ll celebrate the day many more times together!
Day 9 of the Challenge:
I’ve known Mrs. S. for nearly all my life. Fifteen years ago she was diagnosed with an aggressive form of breast cancer. She had a mastectomy and chemotherapy. The cancer eventually went into remission. Mrs. S. came out of a dark depression that had engulfed her during her illness. She started to hope, booking appointments for leg waxes and romantic weekends away with her husband.
A month later her previously healthy 20 year old son collapsed in his room. He had had a catastrophic brain bleed. Within seconds he was transformed from a beautiful young man with his whole life ahead of him to a bloated heap of bones and muscles. Mrs. S. wore black and retreated into herself, her face and body a contortion of pain.
Months after her son’s death, I was admitted to hospital for my first round of diagnostic tests. I reacted badly and ended up with mengingo-encephalitis. Mrs. S. came to visit me every single day, bringing me home cooked food she was sure would help my recovery. She continued visiting me after I was discharged.
Over the next few years I was in hospital much more frequently than I was at home and Mrs. S. was always there, coming by with silly stories and treats to try and keep my mind occupied. In truth she needn’t have said anything. Her existence was enough; strength and courage passed on by osmosis.
A few months before her son died he was trying to organise a family trip to Scotland, where I lived. When I was strong enough to leave hospital and go back to Scotland, I spent hours trying to figure out if I should do something there in his name… In the end took an empty bottle, filled it with sea breeze from the isle of Skye and took it to his mother back home. She put it on his grave where it stayed for years, next to pictures of boy scouts and smiling young men.
We had a ritual with Mrs. S.. Every Monday evening she would come to our house where a saucepan of prawns baked in red sauce and feta cheese and a glass of red wine awaited her. We would have dinner and talk. When we moved away, Mondays felt empty for a long time.
She was a housewife and a mother all her life. Five years ago she decided to open a food bank with her husband. They founded a charitable organisation that feeds 100 families a month for free and provides cheap, good quality, local produce to close to 1000 more families in need.
Mrs. S. visited us this year, her first ever solo trip anywhere. She had worn black for nearly ten years. This summer she put on a black shirt with grey dots on it. We welcomed her to our house with a saucepan of prawns baked in red sauce and feta cheese and a glass of red wine. It felt like one of our Mondays.
Today I am grateful for Mrs. S.’s presence on this earth and for the lessons her life has taught me and everyone who knows her. I am grateful for her love and the certainty of her presence in our lives. But mostly I am grateful for the existence of a creature whose capacity for empathy towards others is seemingly infinite and not altered or defined by the sum of her own pain or experiences.
We’ve reached day 8 of the 100 day challenge!
I’m generally a very guarded, private person. I tend to be careful with people at first and generally keep my guard up and my defences on high alert for a long time. I always thought that would be enough to protect me from ‘the wrong’ people. Oh how I foolish I was.
When Mr. Wrong, as he’s been dubbed by friends, and I first met it wasn’t just that sparks flew; it was that we seemed to complement each other. He brought out a carefree attitude in me that I didn’t know I could have while I grounded his, oftentimes not very realistic, ideas and thoughts. He was the first person ever to show me that my illness didn’t matter in a romantic relationship, that it was only part of who I was and not a part that anyone should be intimated or repulsed by. I danced with him, sang out loud with him, laughed and cried with him. I am sceptical and guarded, but I trusted him more than I had ever trusted anyone before and got softer, older and wiser for it.
Hindsight is 20/20 as they say and I will not even try to go into the whys and hows and buts of the small personal tragedy that unfolded. Suffice it to say that when Dot was born I was still angry, hurting and raw. Very few people know the story, so I talked to no one about it. It just slowly ate at me.
It’s nearly been two years since Dot’s birth. And I’ve reached the stage where I can own the experience and just be grateful. Grateful to have trusted and laughed and lived regardless of the outcome. Grateful for the spiritual and personal growth that came out of the pain. But mostly grateful for the biggest personal mistake I’ve ever made that was the only thing that led me to the miracle that is Dot.
(Slighty delayed) Day 7 of the 100 Day Challenge:
Edward Calvin Kendall was a chemist. He went to Columbia University, worked at Mayo Clinic and in 1950 he shared the Nobel Prize for Medicine with a colleague of his, Philip Hench. Working together, Kendal & Hench were the first scientists to ever identify and isolate adrenal gland hormones such as cortisone and hydrocortisone. Today they have been made into, oftentimes, lifesaving drugs used to treat a variety of ailments. Thousands of people can’t imagine life without them.
A very dear friend of mine (and calling her ‘only’ a friend isn’t quite right, but alas there are no other words for that weird place between friend and family) has Addison’s disease. That is to say she has no functioning adrenal glands and relies entirely on hormone replacement treatment with hydrocortisone pills to survive. In times of physical stress, like when she has a fever or is otherwise unwell, she has to inject hydrocortisone. Kendall & Hench’s work means she is alive and has a fighting chance against a monster of a disease.
In 1914, long before his Nobel Prize, Edward Kendall became the first person in the world to isolate the hormones of the thyroid gland. He received very few accolades for this discovery and in truth, on a scientific level it may have been less significant than his work on the adrenal gland.
But it is because of his work that another biochemist, Charles R. Harington, was able to synthesize the first hormone replacement pill for thyroid disorders (aka levothyroxine) in 1926. Levothyroxine first went into mass production in 1958.
There are millions of people in this world with thousands of disorders, diseases and congenital defects (as sour as that word sounds). As one them is my child I think I’m allowed to be a little biased.
Every morning at 6:30-7am, Dot has her thyroxine. Afterwards she has to wait an hour to eat anything else to allow for maximum absorption of the drug. Because she’s under the age of three and her brain is developing at full speed, not taking thyroxine or taking the wrong dose of thyroxine would equal irreversible brain damage. As the thyroid gland isn’t dysfunctional in Dot’s case but absent, not taking her thyroxine would eventually kill her.
Before Dot was diagnosed with congenital hypothyroidism, I had never heard of Edward Kendall. When she got her diagnosis, I wanted to find out who made her medication possible, who first isolated the substance, who discovered it. In short I wanted to know who we owed her life to. I’ve since memorised Edward Kendall’s name and am so grateful every single day for his existence and work. Not just for CH, but for everyone he benefited through his incredible discoveries. I am also grateful for the thousands of men and women like him and for the work they do.
It is beyond me that people like him don’t have celebrity status in our society, but that’s perhaps a whole other discussion….!
Day 6 of the Challenge:
No introduction needed:
Today I am grateful both for the piece and its composer. A truly magical motet that transcends place, time and language.
Day 5 of the Challenge:
I first met Dr. V when I was 12 years old. He was a friend of a friend of the family and when he went away for the summer, I got asked to look after his budgies. I had never talked to the man in my life, but that June he gave me his house key, instructions on what to feed the birds and left me in his kitchen. In September he returned and I gave him his keys back. The budgies had had an uneventful summer.
13 years later I found myself in his office, as a patient. I went to him to start an intravenous treatment that in all likelihood would trigger allergic reactions and/or other short term side effects. Being aware of the possibilities, I was unusually nervous that day. In response he asked me to sit on the exam bed in the middle of his office, set up my iv, had a nurse to sit next to me and then called his next patient in.
I observed all the consults of the day. I watched as he told a middle aged woman she had lung cancer and heard him speak to her oncologist on the phone after she left. I was there when he advised an elderly gentleman on what to do for a recurrence of his bone cancer. At some point he got a watermelon out of his fridge and cut it up. He shared it with the nurse, myself and with yet another patient, a young lady who came in clutching her CAT scans in violently shaking hands. Relatives and friends of mine randomly came in the office through the day to bring me food or keep me company. A good friend who happened to be a well known theatre actor at the time, even offered his opinion on treatment options for a patient during her consult, before signing an autograph for her. He brought souvlaki with him, so this surreal experience became even more so with pots of tzatziki and aubergine salad around us and the smell of gyros permeating the clinic office.
By the time I went home that night, the possibility of complications and reactions from my treatment was the last thing on my mind. Even now my memories of the day are only of the stories I had the privilege to bear witness to.
I haven’t seen Dr. V in years. And yet he is the first doctor I call when I have a problem. I have met many specialists through the years, some good, some bad. I’ve also come across a handful of truly excellent physicians, people who have dedicated their working lives to research and clinical practice.
What I have only encountered in V. is a person with such an unorthodox way of making patients feel like they are part of a family, visiting him only for a chat. That doesn’t mean he doesn’t he doesn’t deal with the medical side of a patient’s issues in a serious way, he does. But when I call him, it’s not for his medical expertise. It’s for his humanity. And that’s not a small thing to have in a world and a profession where humanity is sometimes seriously lacking.
So today I am grateful for Dr. V. and for his unique creativity and empathy!
Day 4 of the Challenge:
After three sombre posts in a row, this is a conscious effort for something a bit peppier!
Today I am grateful for the very decadent chocolate cake I had for lunch! It was rich, but felt deceptively light and I ended up having two pieces. Actually who am I kidding?! Only one piece is left and I highly suspect that’ll shortly become my midnight snack!
And on that note….see you tomorrow!
Ps. Don’t forget the clocks change tonight!
It’s well past midnight, but technically we’re still on Day 3 of the 100 Day Challenge.
As I’m writing this post, my 21 month old is in my lap watching an episode of Peppa Pig. She’s having one of her hypothermia ’bouts’ at the moment, so she’s wearing a winter hat, thermal pyjamas, socks and shoes and is also wrapped in a duvet. The house is at a tropical 72 degrees. Dot’s temperature on the other hand is 94.8.
Today I’m thankful for the trust my daughter places in me and my abilities to fix whatever problems she may be having at the time. Whether she has a fever and is shaking or she’s hypothermic and trembling or her thyroid meds are off and she’s miserable, her solution is the same; she shouts for me, pleading for a hug and when I take her in my arms she relaxes completely. It’s like she believes I can solve whatever is wrong with her or that even if I can’t that the sound of my heartbeat and the feel of my arms around her body are somehow enough. It is a very odd feeling and a tremendous responsibility.
But on days like today I am especially thankful for that trust and grateful that Dot can sit content in my lap absolutely confident that she is safe, while I secretly tremble in terror and count down the seconds until I can measure her temperature again.