The 12th of September

On the 12th of September 2003, I arrived in Thailand. It was pouring with rain the day I arrived. Monsoon rain, the type I had only ever heard about but never experienced firsthand. It poured for days on end that first week. When the heavens open in Bangkok and the rain comes, life comes to somewhat of a standstill, as one can hardly go anywhere without getting soaked unless you are driving from one covered parking garage to another. Once the rains have stopped, the roads are often flooded and the dirty rainwater mixed with the filthy black drain water becomes the humidity that you feel and smell and wear on your skin until the next rainfall comes to wash it all away again.

On the 12th of September 2015, I was lying in the ICU of a government hospital in Thailand. Unable to breathe on my own, I was on a respirator. The monsoon rains were again falling. I could hear them, and see the rain falling through the tiny window that was just at the right angle for me to peer out of. The rain seemed to be taunting me - being on a respirator, I could not drink anything, but the thirst from not having any water for so long was almost unbearable. As I watched the rain out of that small window, not being able to communicate with anyone, I thought about the thirteen years that I had spent in Thailand, and how life can change so suddenly, but yet the seasons remain the same.

Today is the 12th of September 2017. I have been in Thailand for 15 years. Ironically, the sun is shining today. The monsoon rains have not shown their face for a change, and perhaps it is a sign of encouragement - that despite the certainty of the seasons, one can never truly know what the 12th of September, or any day for that matter, will bring. It is neither the beginning of a new chapter of my life, nor is there a major twist in the plot as there was two years ago. I am neither healthy, nor would I really call myself sick - although I suppose once you have had to use a machine to breath your standards of what healthy is do change to a certain degree. In the past two years I have fought to achieve remission, but much more so, I have fought to find out what it means to live life. I am not in remission, but still, I am very much alive. Over the past three months, I have had the chicken pox, bronchitus, been hospitalised with a serious sinus infection and been on five different antibiotics and various other medications - none of which have touched the bacterial infection that my immune suppressed body has been trying to fight off. My disease is again suspected to be active, and my medication will be changed to a stronger one to try and put the disease into remission. Neither I nor the doctors know if the treatment will be effective. It's pretty much a guessing game on all sides. Yet, each day, I wake up and think 'I'm still alive.' 

You see, living, is something that although we do each day, many of us don't really think that much about. How many more 12th of September's will I get? I have no idea - but I hope that it is many. Many more monsoons and many more surprising sunny September days. I have come to realise that really living life for me means being present, no matter the season - no matter the torrential rain that taunts us with promises of refreshment that never seem to come, or the cycles of life that seem like the smelly, dirty humidity that sticks to us and leaves us no respite. Those are but the challenges of life that urge us on to the sunny days, to not give up hope for the knowledge that they will come, even if they are but sunny moments and not whole days or seasons at a time. It means loving those that are with me today, for who knows if there will be a tomorrow. It means intentionally doing and saying things - looking my children in the eyes and telling them I believe in them, every chance that I get. Taking a little extra time to look at the sunset, and listening especially carefully to the birds in the trees. It means taking the time to encourage others at every opportunity - for although my battle is tough, I have come to realise through my struggles that we are all fighting some kind of a battle and each of us needs someone to help us to know that now is not the time to give up. 

Live intentionally. Love intentionally. Encourage others intentionally. Be the sunny moment in someone's monsoon rain. Wake up each day and remind yourself, that no matter the challenges that life may bring, today, you are alive, and while you are alive, there is hope. 

The Medical Power Shift

Modern medicine is truly a miracle and the fact that I am even alive is a testament to that. It is astounding the things that they can do with the medicine and the modern medical machines that are available. People, who today are diagnosed with diseases that could have meant a death sentence just half a century ago, are now given the opportunity to see their children and maybe even their grandchildren grow up and flourish. What amazes me even more is the young and nimble minds of the new doctors, who are armed with technology and are not afraid to use it. The world is changing, and these are the doctors who are going to change the face of the medical world.

 I marvel that even though almost every doctor I meet looks at me like a ghost from one of their med school books - having Granulomatosis with Polyangiitis (GPA) is something many of them read about, but since practicing have rarely, if ever, seen in real life - yet, the modern medical world gives them access to the information that they need in order to treat me. The miracle of modern medicine goes beyond borders with information now freely shared all over the internet. The biggest miracle is not the machines, or the drugs, but rather the ability of any doctor anywhere in the world to access information about a similar case even without ever having seen one in real life. 

When my rheumatologist came into the ICU to talk to me, my parents and my husband about my initial diagnosis, she came armed with her iPad and pulled up files from the Vasculitis foundation in the UK. She answered questions, that would make many doctors cringe, with ease as she pulled up the information right there in front of us from the internet. She is a remarkable lady but she is currently on leave and there isn't another rheumatologist within 100kms from us. I recently was examined by a doctor of another speciality who had to make the use of a medical camera as a diagnostic tool. When the new doctor found something she was concerned about, she took my phone and recorded the video from her computer screen for me to keep in case I needed to urgently travel to see another rheumatologist before mine came back from leave. She then sent the video in a message from her phone to my rheumatologist who was on leave. I sat there dumbfounded. The fact that they can see inside my body with advanced medical cameras is amazing enough. The fact that the piece of apparatus that really saved the day on this occasion was a simple iPhone camera is quite another. The big expensive piece of equipment in the hospital was necessary, but the fact that the doctor was young and smart enough to understand the power of the phones in my pocket and hers in getting the information to where it needed to be was just mind blowing.  

Since being diagnosed in 2015 I have also discovered that the power of social media in assisting patients and their families is phenomenal. When you live in a corner of the world where your doctor has never even met someone who has the same disease as you, it is hard to imagine that you would ever be able to share your struggles with anyone in real life. To be able to connect with hundreds of patients at the same time who have gone through or are going through the same struggles has increased the value of social media for me one hundred fold. Shared struggles seem much lighter, and being able to talk to people who are actually going through what you are going through, as opposed to only medical professionals who have only ever read about what you are going through is something that holds an enormous amount of value for patients with rare diseases like mine. The doctor who took the video with my iPhone explained my options to me, but was surprised that I knew much more about the procedures that she was talking about than the average patient due to the information that I have been able to gather from patients with similar conditions. It may not be everyones cup of tea, but I have even watched a similar procedure being performed on Youtube to better inform myself in case I have to have the procedure that they are recommending. The information is out there, and it is now up to patients and doctors to work together using wisdom and mutual respect - patients after all are not qualified doctors and should respect the imperative role that their doctors play in taking care of them, but the doctors must also accept that in many cases the patient is no longer uninformed, and now plays a much more active role in their own care than they ever did before.

The internet is shifting the power of the medical world. With more young doctors open to using technology and more informed patients, who knows what it will look like in the years to come. The shift is understandably difficult for many doctors. It must be incredibly frustrating to have patients coming in declaring that they have some disease that they have found on Google, without any genuine medical basis for their self-diagnosis, disregarding years of medical school and medical experience and insisting to prefer Dr. Google. But in the cases of patients that genuinely do have diseases that doctors have rarely seen, the shift is welcome, and the faster that it happens the better. The medical world is no longer a place that is accessible only to those who study to be doctors. Our world is changing and as much excitement as the enormous medical discoveries of the future are going to bring, perhaps the wonder of the shift is that sometimes the solution is as simple as the iPhone in your pocket, or the iPad on your doctors desk, and the source of information that you may really need is a group of patients from all walks of life that have the same disease and a Facebook page in common.