LDUK is delighted to welcome James Herbert to our team of volunteers as our Business Development Manager!
When you go through trauma in life, if you are lucky enough to come out of the other side, you start looking for positives. Have you developed as a person? What have you learnt from the experience? It isn’t easy. I can’t really say that anything about what has happened to my daughter, Molly, since she was bitten by a tick just over a year ago feels positive. I would rather she hadn’t had to grow as a person and my family hadn’t learnt all we have over the last year. I would rather we hadn’t learnt what Lyme does to a young body; how it paralyses them, how an 11 year old can have symptoms of dementia, how they have crushing, unrelenting pain in their head day in day out, what its like when they are found unconscious at school, how they give up friends, then school, then life. How in three months an active child’s world reduces to the four walls of their bedroom. I’d rather not know that it will never leave their body and that it shares many characteristics of HIV and Syphilis – and that it can kill them if not treated.
More generally I would rather not know that when your child has this particular disease the NHS denies you relevant treatment. That testing is poor and guidance, although improving, is misleading. I’d rather not know how ignorance, arrogance and complacency infest the most august echelons of our medical system. How far Doctors can move away from the essence of doctoring and how keen so many Doctors are to win intellectual battles with each other instead of listening to patients. I would rather not know that getting your daughter better from Lyme Disease can destroy you financially and means that you have to take traumatic journeys to the US or Germany to start healing. I’d rather not know that ticks carry many other infections other than Lyme but we just don’t bother to test for them – yet.
I would rather not know that this whole situation appears to be caused by the corruption of the US Health Insurance industry and that the results of that corruption have been imported to other countries. I’d rather not know that there is a significant percentage of people in the UK right now suffering from blindness, paralysis, heart disease, memory loss and despair, who are mis-diagnosed with all sort of non specific conditions, who have in fact been bitten by a tick.
But…but, I still (just about) believe that its always darkest before the dawn. And that when it comes to Lyme we are moving towards the dawn. And the UK can play a leading role in that change. So what are my positives?
First, I am privileged to have been invited by the most incredible group of women I have ever come across to join Lyme Disease UK. Natasha Metcalf, the Chair, Co-Founder and inspiration behind the organisation was bitten by a tick at 16 years old and undiagnosed until she was 24. She endured years of all of the above symptoms. Seizures, brain fog, intense pain – ignored by her own country’s health system but now healing under the brilliant work of a courageous Doctor in the US. I’ve met Natasha, we speak and we talk on Slack, regularly. You’d think you’d trace bitterness, anger even rage. But all there is energy, passion, vitality and an inner strength to change this farcical but tragic situation. Not only did she co-found the charity, she’s unpaid so she has to work at the same time as being only 70% better and undergoing gruelling treatment. All the other people working for LDUK are in the same boat – unpaid, feeling unwell much of time, supporting families, working and paying for their own treatment overs\eas. The sudden increase in coverage about Lyme you’ve probably noticed over the summer – on the radio, on the TV, in the Nationals – much of that is driven by the tireless, self sacrificing work of this group. I will join with them to help with business development – we will raise awareness, especially in schools, we will stop people from getting bitten in the first place, especially children. We will challenge our politicians and medical professionals until this changes. We will advocate for proper research so cures and treatments are found. I couldn’t be happier and more privileged to play my small part in the mission of this heroic group of women. Sorry to LinkedIn and Twitter followers, but I will be banging on about Lyme until things change – I’ve now even got a title that says I can do so officially.
Second, I chose today to go public on this as its our first Community Action Day as part of The Panoply. I’m fortunate to work with a group of people who put their money where their mouth is. Many companies talk about purpose and contribution to society. But actually when you’re in the start up years its enough stress just making sure you stay around. Its tempting to say you’ll do the purpose stuff once you are bigger. But Neal and Olly have always said it should run through our veins from the start. So I will be using our first community action day to have a kick off meeting with Natasha and then I will be going round putting up posters and being a nuisance in GPs surgeries until they put them up too. Everyone at work, The Panoply, Not binary and Human+ has been incredibly supportive throughout all of this. Its not the best situation when you acquire a company and one of their key people is immediately hit by a huge personal trauma. But everyone in our group has never missed a beat in being supportive, understanding and compassionate, something for which Sarah and I will be eternally grateful.
And finally, having received proper treatment in the US Molly seems to be better. She’s back at school, playing with friends and enthusiastic about living again. Life will never be quite the same; diet is restricted, the immune system has to be optimal at all times and she is in remission rather than cured. But she’s out there, she’s up for it, not wallowing like her parents and keen just to be normal again – in many ways, in the end, she and we are the lucky ones. She is an inspiration to us and the lessons she has taught us will shape us for the good.
The bitterness will fade and the hope for change will grow.
Next time you go outdoors take 5 minutes to make sure you stay lucky too. Find out here.