“If you fall into a mud hole, check your back pocket. You might have caught a fish.” Darrell Royal
She was diagnosed with dystrophy or CRPS (Complex Regional Pain Syndrome), osteoporosis, osteoarthritis and thrombosis. One of her specialists was puzzled, since she would be the first dark skinned person with dystrophy ever. It is slowly becoming accepted by mainstream medical science that all the above illnesses are caused by chronic infections. Yet they do not know what is causing these infections.
Who is Carla?
Carla is my ex-girlfriend that my mother liked the most. She was almost fifty years old during the time of this interview and has a Dutch mother and a father from Surinam. Both her parents were very tough characters. Similar to Ben and Bregje, she also had a home situation with a lot of emotional tension. So much tension that both she and her twin sister were hospitalized as babies with intestinal problems.
Carla has a son who is sixteen years of age. He was a very happy child of six when we had our relationship. He wanted to become a professional soccer player. Now he is more timid, but he is still a sweet young man. Carla was a professional dancer, who later started a dance theater company for toddlers. She felt it was important for young children to learn how to use their bodies in a playful way. She made all the costumes and decorations herself in her small living room, which was so packed with pieces and tools that she had to come and stay at my place during the preparation phase for a new play. I saw many of these plays and really liked what she was doing. She even went to Africa with only one suitcase from which she would conjure a whole show in which the delighted kids would participate.
Carla was a healthy lady, although she was born with a “small hand”. She was told her hand did not have enough room in the womb to grow properly, because her twin sister was “in the way”. Carla never paid much attention to her small hand, but I remember that my attention was often drawn to it, as if it was a separate living creature that needed special care. She was always careful not to injure her hand and was creative enough to build special tools to help her overcome this vulnerability.
Carla has one of the most independent characters that I have ever encountered. The only thing that she really could not stand was to have to rely on bureaucratic institutions. Somehow they would always annoy her. Yet being an entrepreneur, she was not bothered that much. She would take her small truck and do her plays at libraries, schools and private homes.
At some point she did however break two fingers of her “small hand”. They never healed and the joints in her fingers disappeared, leaving her hand even more fragile. She started to wear a brace to protect it. She found other ways to continue to work except that driving and unloading her truck became harder. After five years it began to start to hurt even more instead healing. Slowly her hand was becoming an alien, as if it was being eaten away from the inside. Being as tough as she was did not want to worry anyone or show it.
Carla moved to a spacious artist house in another area of Amsterdam and we did not have the chance to see each other very often. Until my mother received an email from her in which she explained how her health had deteriorated badly. Carla now had to buy an electrical wheelchair. She was lucky to have had it paid for by her friends who helped her by donating money, including my mother. Her insurance refused to pay for it.
I went to visit her and I was struck by how poorly she was doing and how fast her health had gone down. She had to sell her truck and give up her business. Her family and a few friends helped her adjust to her home. I started to go by her place once a month to cook for her and I watched her progress as she was going downhill steadily.
Ever since Carla became ill five years ago, I had a strong intuition that she actually had Lyme, causing a multitude of problems including chronic infections. She would not hear it, which left me pretty frustrated. In a way this experience turned me into a reader of my own book. How to help when someone is entitled to their own choices, road, and pace and defense mechanisms?
At a certain moment we took a small walk outside with my dog. She showed me her hand, which was now completely wrapped in a brace to protect it from touching anything. I don’t think that I will ever forget the sight of it. It looked grey and rotten. She was in so much pain that she considered ending her life. The only thing that stopped her was the thought of leaving her son behind. So, creative as she still was, she had thought of a solution. She had asked her doctor to amputate her arm.
Doctors do not do amputations on demand. The only time that they do amputations is after a heavy accident; when there is no other option to act in order to save a life. The doctors in the Amsterdam hospital did, however, consider the amputation, but were reluctant to take the risk after assessing the state Carla’s legs were in. One doctor asked her directly, “How can you live like this?”. It took her one and a half years to find a doctor in the north of the Netherlands, who was brave enough to do the operation. One and a half years of relentless suffering. The skin of her face, which had been brown before, looked grey from exhaustion and pain.
Did it the amputation of her arm help her?
I had to drag myself over to visit her after her operation as I really dreaded to see her without her arm. Yet she looked great! Lifting the weight of that unbearable pain made her look like her old self again. She started to develop new plans, including creating a cartoon book to teach disabled children that a wheelchair can be their friend. She even went to play ping-pong for disabled people. Until a car ran a red light and rammed into the taxi that was taking her home. The taxi bounced off a sidewalk and Carla almost fell out of her wheelchair. The other driver, who proved to be a professional nurse when she was tracked down later, shouted that it wasn’t her fault and took off in a hurry.
This accident made it impossible for Carla to continue her ping pong. Her knees were hurting so badly now, they could not even stand the touch of clothes or water anymore. Per her direction, a tent was made for the wheelchair. The only things that she had to wear were the stockings on her lower legs against the thrombosis.
Disliking to be dependent on institutions, her mood was tested dearly. One professional “home care” professional after the other came to help her and messed up in any way that they could think of. If it didn’t fit their planning, Carla had to wait for hours to be able to go to the toilet or to bed. Now she does have a good care company that works with freelance professionals who adjust to her needs and wishes. She even has the choice to get the ones she prefers to take care of her. Yet the Dutch government is making it impossible for this type of companies to survive, so Carla might need to get used to the idea that the organized “idiots” will take over again.
What did she do after the amputation?
Carla made new plans again. She could go and work at a hospice, listening to the stories of dying people. In a hospice there is always an abundance of volunteers doing practical and nursing work, yet she discovered that everybody there is so busy that nobody takes the time to sit and listen to the dying people. Well, sitting and listening is something Carla is great at.
Yet again her situation got worse because suddenly spasms started to develop. She became so tired again from these spasms that she had to give up her new plan to feel useful and socially included. Although she did not say anything about this, I could imagine that she was reaching her limit. Five years is a long time to make plans, to be disappointed by seeing them blocked by your own body and to have to bounce up again.
How did her environment react?
At first, many people visited her, however, eventually people went on with her own lives and Carla became increasingly isolated. Her twin sister started drama about Carla getting more attention than she did. This twin sister managed to smash a door against her wheelchair when they were shopping together. She had no attention for anyone except herself. Carla, after having done several attempts before to create a healthy relationship with her twin sister, decided to end it once and for all. Her other sister and brother did step up though and Carla’s house was adjusted to her needs. Her brother built a ramp so she could drive up to the second floor where the bathroom is. He even paid for this himself, since the local government found some excuse to duck their responsibilities.
Carla’s close family, my mother and close friends like me came over about once a month, to cook and keep her company. I discovered that I had to write the day on my calendar, since despite my good intentions I would forget it otherwise. Out of insecurity, I would only ask her about herself, yet she told me it was actually nicer for her to hear something about my life in the “outside world”. Somehow I felt embarrassed to do this, as if it was unfair that I could go out and do things while she could not. But seeing how she enjoyed hearing my stories, I forced myself to share them. Sometimes I did mention Lyme again, yet since she told me that she became so sick and tired of all the tips and advices people gave her, I stopped mentioning it at some point. I could relate to her statement from my own experience.
In the Netherlands – yet maybe that is a general human feature – everybody tries to tell others what to do. Probably people think that is helpful. I think it is a way for them to deal with their own feeling of powerlessness. I know that I am tempted to do the same when I see someone like Carla suffering, and when I feel unable to change the way things are going. But when about twenty people do that, it becomes hugely annoying. These well-meant tips and advices increase Carla’s feeling of being seen as a “patient” that needs to be fixed, instead of as a human being. It also constantly forces her to focus on being ill. That stresses her, because she finds it increasingly more difficult to create new hope for herself as she had been disappointed enough.
Yet it felt pretty horrible to see her go downhill, while I was still sure that she did not really have the diseases that the doctors told her she had. In my mind finding, Lyme could give her hope to at least become stable and maybe even get a little better. I tried to block thoughts like, “If it really is Lyme, she might not have had to lose her arm.”
I was in high spirits when I visited her a month ago. The On Lyme Foundation had just gone online and pictures were being sent in from different continents. My idea to write this book was taking shape, supported by a class on how to write a book fast. So I just happily shared my adventures without wanting to convince her of anything. I had also involved my old co-workers, who had direct personal experience with an unpredictable health situations, enabling them to relate to the emotional turmoil of our future clients. I told her that I asked them to watch Under Our Skin to get a good first impression about the different aspects of Lyme.
So I had no hidden agenda. I just came to cook and chat, and I was happy with what was going on in my life. I am sure this created space for her to become interested. In the five years before she always backed off the moment when I mentioned Lyme. Now she asked me if she could see the documentary too.
Since her English is not fluent and the DVD was not subtitled in Dutch, I went back the next week so we could watch it together and I translated the parts she could not follow. She was impressed and touched by the stories shared in the documentary. We talked about the chances of her having Lyme and why she would want to find out if she had it or not.
I said that I could imagine a few very strong reasons for her to not want to know: for starters the realization that if she did indeed have Lyme, the amputation of her arm and her being in the wheelchair would maybe not have been necessary. In my mind that is a powerful reason to not want to know. For her, the potential insecurity mattered. At least now she had a fixed diagnosis of what she was suffering from. A new diagnosis would bring her back five years, in her experience, to a place where she does not know who to turn to and what to do.
We went through all options and pros and cons that we could think of. In the end, the fact her ex-husband is also diagnosed with dystrophy and the risk that her son might also be infected with Lyme if she had Lyme herself, brought her to the conclusion that she did want to test for it. She decided not to go to her GP, but to use the same method that I used to find Lyme in 2007. You can read more why we did this in the next chapter.
What did she find?
Since neither Carla nor a Dark Field Microscope is easily transported, we had to devise a way to get her blood to the microscope. On February 11, 2014, the analyst found her blood swarming with Borrelia spirochetes. I could see them crawl out of her blood cells and swim right past killer cells, which were not responding at all. This meant that her immune system could not detect the spirochetes.
I called Carla to tell her about these results and she was understandably confused. She hardly knew anything about Lyme, apart from that documentary we watched together. Carla did not know if she could trust the lady who had looked at her blood. She even became suspicious because this lady had not charged any money for the test. I had asked her if she would not charge, since Carla did not have the money to pay for it. Carla was not even sure if it was really her blood we had looked at. When I laughed and said that I really had not switched her blood sample with another one, she relaxed a bit and laughed at her own thoughts. Yet it still did not sink in.
Three days later, the CD with the recorded blood images arrived at my place. I went back to Carla’s to look at the images of her blood with her and to explain what they showed. She told me that she had asked her GP to do an official Lyme test too. I explained to her why the odds would be about 100% that he would not find it with his test. Seeing the images for herself made a world of difference, as it had for me in 2007. Never before had I seen Carla cry, yet now she had tears in her eyes. I just stroked her back, while her body was shaking from the spasms.
How did she react?
Her first thoughts went to how her family would react. She was afraid that her sister would regard everything outside of the medical system as quackery. By coincidence her brother, who works at the Dutch police, had just told her about a colleague who had also discovered he had Lyme and is now visiting a natural doctor to treat it. So he was less inclined to discard alternatives right away. I suggested to Carla to not do anything for a couple of days, to let it sink in first. She decided to cancel her appointment with her GP.
We talked about what this news meant to her. I also wanted to find out what she was experiencing as research for this book. Because you can be sure that if people close to you find out they have Lyme – after having been told for years they are either crazy or when they just had to believe their doctors that they had other diseases, a whole cascade of emotions will be triggered. She indeed discovered that this Lyme diagnosis was confronting her with a trust dilemma. Who could she trust? Why would she give up the security of having a range of diagnoses, even though the predictions of recovery were nil? Where or who could she turn to? How could she afford treatments that would surely not be covered by her insurance company, which already flatly refused to pay for the painkillers she needed for her dystrophy?
You can read the rest of Carla's story the Priceless e-book Shifting the Lyme Paradigm; the Caretakers' guide through the Labyrinth'.