PART XI: The Research

Here, I have to move a little back in time again. When I worked at my 2^nd job as a Software Developer in the late '90's, we were given free reign of internet usage, as long as it didn't interfere with our jobs. It was so exciting! Very few people in my country at that moment, had that priviledge. The Internet was still newish and expensive to access. So during lunch hour and after work, I could spend as much time on it as I liked. Wow. A new world opened up for me. I joined groups, learned how to use a search engine and accessed libraries previously hidden from me. I'm a bookworm, so libraries, reading, books, research papers, it all has a very special place in my heart. 

In 1999 I was diagnosed with endometrosis and I knew where to go for answers. I joined forums on Endo, and became part of “the community”. The people were wonderful. The stories inspirational. And it contained a wealth of information. For the first time, I didn't feel despair, but empowered to make my own decision. The doctor wanted to do a major operation, similar to a c-section. And the newest research on it was that a laparoscopy is much better. Especially if the woman still wanted children and wanted to try for a normal birth instead of having c-sections. Which I did. 

I thus realised something on that day. Something others, many times since, both friends and doctors, maligned me for. But it came from that point in time. When I realised, I can search on the internet, and prove a doctor to be in err. 

The people in the forums were completely shocked that this doctor wanted to do a laparotomy on me, something that haven't been done for years anymore in cases like mine. It was old school and considered bad practice at that point in time. They were also shocked that he did a laparoscopy on me to diagnose the endo (which was good practice because it's undeniable proof, I even got photo's, eek!), but then closed me up without "zapping" the patches and wanted to operate again via a larger operation (not good practice).

I used “Doctor Google” and they proved the doctor wrong.

You have NO idea how empowering and strange and shocking and amazing this realisation was for me. I grew up in a conservative country, amongst people regularly taunted as “backwards” by other countries, as we tend to hang onto the past ways. In small towns, the words of the Doctor, Principle, Pastor and Police Chief were law. NOBODY contradicted those handful of people. Ever. So to now find people who actively encouraged me to do JUST that..... to contradict my doctor... to NOT do as he told me to do. To refuse to do the operation that was already scheduled for January 2000.... it was mind blowing in those years, amongst my generation. 

That's why we went on the holiday end December 1999 (where I watched the fireworks ringing in the New Millenium). So that we could clear our heads and make rational decisions instead of rushing into a major operation. I spoke it through with my mother and she encouraged me to listen to the advice of other women “who've been there”. Who understand. Who tries to share their knowledge out of the kindness of their hearts. Not to be malicious or lead people astray. But to help. So I decided to see a 2^nd doctor. 

He was just as shocked as the women on the forums, that the first doctor wanted to do a laparotomy. It truly was horrifying in his opinion, and he urged me to rather try either a laparoscopy or hormone injections. After research and following his recommendation, I started the hormone injections. The rest is history as they say. I recorded it in the “Mr N's Pregnancy and Birth” posts on this blog.

The point is, I learned something so valuable that day. That I have the right to make decisions over my own body. That I have the know-how and opportunity to seek my own answers. And that I have the common sense to look for the best for me. That doctors cannot be trusted on face value alone. That they're not all powerful, all knowing nor necessarily the best decision-maker over me or my body. And as an extension, later over my children. And that forums can be invaluable. Precious. Others can mock and scoff them as "Dr Google", but nothing beats the personal experience of thousands of women who collectively share it freely.

That's why it angers me when people maligned me for "seeing Dr Google”. They maligned people who helped me, for no other reason other than to want to help. And they did help me, it wasn't lies or wrong, but they steered me wisely.

Why is it wrong to empower oneself with knowledge? I'm intelligent, I can learn, I can gather information through what doctors share in books and research papers, and through the personal experiences of other women or mothers. Then still listen to my personal doctors' recommendations and advice based on their own experience and knowledge, which is also invaluable. And I won't be so presumptions as to say I can do their job. Not at all. They have the practice and know-how and degrees. 

But I gained the practice how to research and gain information. And together, we could either be a team or I could be berated as a fool that trusts “google”. As if I read the first article that comes up and base all my decisions on that. When in fact I read at least 10-20 articles, sometimes hundreds. I read several websites from organisations working with that particular condition in people. I read personal doctor's recommendations in their practices. Then I usually read tens of personal stories, sometimes literally hundreds. I'll download books and read the relevant chapters. I look for different studies from different countries, usually at least 3-5 countries, and compare the different methods, recommendations and results and statistics. Then I look at what's considered old practices and modern practices. I'll compare stats of different methods or medications or practices or natural methods or plants or whatever was tried for the past 100 years. And then I'll catalogue all that I learned and summarise it for my husband. I'll list the options, the benefits, drawbacks and possible risks for each, and the stats on it all. Then we'll make a decision together.

Are other people as thorough? Maybe not, since not everyone has the time for it. So I understand there indeed are people who only look at the wikipedia entry and believe that's all there is to consider about a certain medical problem. 

So I learned how to research during those days after I was diagnosed with endometriosis. From there it was a short step to do the same with Mr N's epilepsy in 2006. Quickly I found moms of children with epilepsy. I joined forums and learned of the different types of seizures and epilepsy diagnoses. What to do and what not to do. How to deal with the side effects of the medication. How to prepare the child for MRI's and EEG's. It was invaluable. Extremely valuable. 

Then Boeboe happened, and my research started really in earnest when she was 5 in 2009 and we realised there truly were many little things up with her. In the end, I believed she had Occult Tethered Cord and took it to the Pead around 2010, who quickly googled it herself, and agreed. Yes. It fitted perfectly. And with her encouragement, we ended up finding the one that operated on her. She also worked WITH that doctor as they were in the same hospital, and visited Boeboe every day during her stay in hospital after the untethering. Making sure she was as pain free as possible and stable and doing well from her pediatric perspective, since the surgeon was an adult neurosurgeon. Not pediatric. All for free. The medical aid didn't pay her, as she wasn't the registered doctor responsible for my daughter. Still, she checked up on her twice a day and spoke to us daily. It was wonderful to have doctors that believed in “Dr Google” and not maligned a mother for it, but supported her every step of the way.

I didn't just google and diagnosed Boeboe after one search. I spent more than a year, working until early morning hours, researching. Comparing studies. Reading loads and loads of blogs of moms with children that have occult tethered cord, tethered cord and spina bifida. I downloaded books on anatomy and the spine. I watched video's on such operations. I joined forums and message boards, and one particular one was absolute worth gold. They had all the knowledge I wished doctors had. They knew everything inside and out, because they lived it, daily. They were actually the ones that told me in no uncertain terms that they were pretty sure that's what my daughter has, and that I have to delve into that possibility. I would forever be grateful to them. And for God for bringing them over my path when I needed it.

It was also shortly after I learned how to successfuly navigate the Net, that I was called the first time to start researching into the evil running our world, in 2000. Then around 2011 and recently in 2018, I was also urged by God, to study our country and my people's history, and politics. It was hard for me. Oh, I love history and have always read a lot of books about it. But until about 2007/2008, I refused to have much to do with politics. In our country, it's a very hot potato. But I did. First from around 2008. 

Unfortunately, it caused me much despair. So much so, that a few years later we started to get the ball rolling to even emigrate. I despaired for my children's future in this country. But that wasn't why God wanted me to research, and He put a stop to those plans. First only gently, by His Spirit, but I rejected it and wanted to follow my own way. So He used a more effective way. Both me and hubby came to the realisation at the exact same time.... we're staying. For better or for worse. 

So we closed that door. But I kept an eye on the politics, the country and events here. Knowing it's a pressure cooker. That WILL blow off steam or spill over.

My research on the rest took off from where it left off in 2000, and just continued when I was called again in 2017. I knew how to research. How to gather massive amounts of information. How to Google for answers. How to find the truth and sift out the unnecessary. I had so much experience now. I was practiced in the "art" of researching. God prepared me extremely well. He gave me the skill set. The experiences. The knowledge. The know how. What He needed me for, suited me perfectly. I could research. I knew how to research. And... I love researching. Have always, but with the advent of the Internet, enjoyed it even so much more. And now I have had decades of experience in it, with the successes to prove that I know what I'm doing. 

In 2017, God wanted to introduce me to another media of information sharing. I was called to Youtube. My children had a good laugh about that. I registered around 2012, I think, but never used it. I found it boring. But the kids all loved it. So when in 2017, I out of the blue went onto Youtube and started searching for very specific information, they found it hilarious that I was now watching “Youtube video's”. :-)

It had a purpose though. God called many people from around 2005, it seems. Some later, some a bit earlier. To start preparing. Many were called to make video's of the information they themselves gathered. Others did interviews with people to share their knowledge. Some read books or letters and recorded it as video's. Others relayed dreams or visions or prophetic words God gave, in a video. Many sermons were also posted on Youtube. Even some of Pastors who lived long, long ago. Many teachings were shared of His Word, and the deeper meaning behind some verses, in video's.

So I started watching these video's, listening to podcasts, audio books, interviews, etc. in 2017. God told me several times (much later only) that every video I was lead to, was carefully prepared by His Spirit and chosen for me to watch, at a very specific time and everything had an order and a reason. Because everything I was studying, was training. He was the teacher, I the student. He was training and preparing me, overseeing everything. Every tiny detail. Making sure that I was taught and shown everything I needed to know. Later on, I was to use this training in practising sessions with others, on the "battlefield" of Twitter.

I wasn't alone. There are many of us that were called to train in different ways and for different reasons. Many were called to share, others were called to learn. I was called to learn. And I did. From many, many, many people. I listened to thousands upon thousands of video's. Literally. Some I listened to twice or 3 or more times even. Some a few minutes long, others an hour or even longer. I loved learning and has always been open to people teaching me. I watched the video's and listened to interviews, audio books and podcasts for hours and hours and hours on end. In 2017, I was still working part time, but afternoons, evenings, weekends and all school holidays were mine. I spent most of it on my research. Somedays only about 4 or 5 hours, other days easily 16+ hours. I didn't go to bed before 1 or 2am. Weekends or holidays, I would go to bed as the birds started singing around 4 or 5am. I learned and learned and learned. Every waking moment I wasn't at my job or busy with one of the kids or cooking dinner. Though, I usually had my earphones in while cooking dinner!

Quickly, it turned into my new obsession. I learned and studied as fast and as much as I could, about history, theology, mythology, geography, physics, politics, other languages, etc. Many many topics. I soaked it all up. I read the books I was pointed to. I delved into the histories I was shown.

And thus I kept my word. My promise of 2000. Faithfully doing all I can, in the time I was given. Giving it my all, when I was called again. I studied and studied and studied. I refused to take a break. Even when we went on holiday end 2018, I took it all with me and studied some more there. Every day.

Until in March 2021, I was told.... It's almost done. I can stop the incessant studying. I knew I didn't need to prove myself, but God understood I had to feel like I accomplished my promise to Him. To give Him my all, when He calls again. But then in March 2021, I was thus told, I can now slow down. Still study, but it would be more like part time. Keeping an eye on things, but also start scribing. I was given specific things to scribe. 

So I did. It was a nice change. And I felt the peace. I started to relax and slow down my incessant studying. I took some days off. Just to read a normal book for a change. Spend time on myself. Clean the house better instead of always hurrying. Spend more time with the kids again. It was good. Especially for little Peanut. Things normalised and stabilised a bit after a very hectic almost 4 years. It was still very busy, the workload actually increased, I just spend a few hours less on it per week.

In fact, one day in September or October 2021, I was looking at the mountain of projects I had to scribe for God. For His people for one day. And I despaired. I specifically looked at this one project that contained over a thousand pages that had zero editing. No punctuation. No capital letters, paragraphs or sentence structure. And I felt like crying, at the magnitude of it all. And I wished, couldn't someone help?

Just then, my daughter came to me to ask if she could stop working as a school assistant for me. She did it for about 6 months, but it wasn't what she was interested in. She wanted to move on to a few art hobbies before starting her full time studies (in art). I said yes, of course. But as she walked away, I thought to myself... wish she could help me with the scribing, since she will have a bit of free time now.....

But I didn't call her back. It wasn't my project. I wasn't the Leader of it. I wasn't the Project Manager. I had no business appointing people to work for Him. That was His decision, His job. So I prayed and asked: “God, if you put that desire in my heart, that she just chose that moment to come and talk to me, as I was despairing about the mountain of work... if it was all your working... please, guide her. I'm not going to ask her and interfere when it's not your Plan for her. Please, let it come from you. Not me. Let her come to me, then I'll know it's from you.”

A few weeks later, my daughter approached me and asked me. Is there any of the things I'm doing, that she could help me with? Not the school stuff, but the “prophecy stuff” as she called it.

I was flabbergasted. Amazed. Astonished. God heard my prayer? And granted it! It has happened before. But still. Each time it amazes me. Wow. How amazing. One day, she'll realise what a monumental thing happened to her, but I was just so very grateful for the help. 

So I gave her some of the workload and it made a huge difference. Middle January when her classes were to start, I told her to rest for a week or 2, and then concentrate full time on her studies for at least the first 6 months or first year. It was too expensive, too hard, too important to screw it up because she was distracted with other work. She wasn't someone that could easily have multiple pots in the fire. She needed focus and clear boundaries. She herself got a confirmation that God approved, she could now concentrate on her studies first for a while.

I continued for another year, until this day, August 2022. Scribing, still studying “part time” and preparing everything I could. But much much more relaxing now. I was even urged in March this year to join the Kindle Unlimited library and get back into reading fantacy regularly. Not just for the enjoyment and relaxation I get from it, but it actually too teaches me some things, which I'll get into later on. Oh, how wonderful this was. To search for a book and get that all exciting feeling. Even if you don't hold the book in your hands, can't smell it and feel the pages with your fingers. Still, it is one of the best feelings in the world for me. So these days, I'd easily take a whole day off and read. And most nights, I only work until about 3am, and then read an hour (or 2!) before going to bed. I then sleep mornings as that's easiest on Monkeyman and Peanut with her insomnia. Then we do schooling.

After the change from only studying, I not only had to scribe, collect, store and organise data, but also had to start practising what I learned. As mentioned, most of this took place on Twitter/X. And other social media, as well as in real life. The first part of studying was 3.5 years long. The 2nd part of studying and being tested on that studies, took another 3.5 years. And recently, God informed me, that it will now change again as I approach the end of that second 3.5 years. I do not know what it will be, but it sounds like a larger change than what happened between the first to the second 3.5 years.

So this was my life the past 5 years, and especially since I stopped working again about 3 and a half years ago. I'll get more into what the research was about in time, but for now, I just need to touch on one last aspect of the past 5 years, unfortunately. Because it too, needs to stand as part of my testimony. It's the one subject I actually hate talking about, because I hate feeling "weak". It's about my health, recorded here.