Greek mythology tells of a monstrous fire-breathing hybrid creature of Lycia in Asia Minor, composed of the parts of more than one animal. It is usually depicted as a lion, with the head of a goat arising from its back, and a tail that might end with a snake’s head, and was one of the offspring of Typhon and Echidna and a sibling of such monsters as Cerberus and the Lernaean Hydra.
A Genetic Chimera is an organism that contains more than one DNA type in its system. It can present visually with attributes associated with the dominant DNA type (lion) or present with mixed features (lion, goat, snake). Some humans have been identified as being chimeras in that they carry the DNA of two individuals in their cells. It is a rare phenomenon which usually occurs as a results of two identical twins merging at early gestational development stages.
Lupus – an autoimmune disorder. Your body’s defense mechanisms (immune system, white blood cells etc) turn against what they are supposed to protect (cells, tissue, organs), causing pain, inflammation, rashes, skin disfigurement, organ failure even death.
By now, you must be wondering why I’m going on about chimeras, genetic chimeras and Lupus.
To further discombobulated you, I’d like us to stop thinking about DNA, biology, Greek mythology, chimeras and the medical implications of Lupus.
I’d like us to focus on a person for a moment. This person has to live with Lupus. Aside from the fact that this person has been diagnosed with and suffers the symptoms of Lupus, this person is a woman, a man, a boy, a girl, a mother, a student, a worker, an artist, an accountant, a designer, a Doctor, a nurse, a car salesperson, a nanny, a teacher, a writer, a software engineer and so on and so on.
Let’s use a woman as our arche type. Her name Angela. (the following story is purely fictional. Resemblance to actual places, people, circumstances is completely unintentional.)
Angela grew up in Nakuru, raised by a wonderful single mum who unfortunately died a few weeks after Angela completed high school. Angela had performed well enough it wasn’t hard for her to get a scholarship which meant she could complete her studies in business and information technology. She eventually chose software engineering as her path and was soon employed at intern level by a global information company. Following graduation, her path eventually led to taking up an entire software development department with acclaim as one of the youngest women to ever do so in Africa.
Shortly after this she got married, at the age of 29, to her best friend, Stephen. Angela and Stephen had in university though he had taken the path of Criminal Law. At the time of their marriage he has just started up as a junior associate with a prestigious law firm in Nairobi.
Soon they found that they were both at a great place financially, emotionally. So they decided it was just the right time for them to start a family.
Getting pregnant was easy! Angela and Stephen saw a gynecologist before who told them they were just fine and good to go. And they were. Conception happened as soon as they stopped using contraceptives. The first six weeks were a breeze. Just a bit of morning sickness but nothing adverse. They kept up their medical appointments and on the 12th week they told their respective families! How ecstatic they all were!
Then it happened. The migraine from hell. Angela wasn’t new to migraines. As a techie she’d often get those made in hell headaches and blame them on too much screen time, or perhaps all nighters coding or trying to finish a hack in time for presentation to a client. Rest, Syndol, or MIGR 10 when it got too bad, and lots of water and usually her system would right itself.
But this was different, not just because there was a pregnancy involved. Angela could feel something was wrong. So she went into the doctor. A few tests suggested watching out for pre-eclampsia because of the high blood pressure noted. Otherwise once her blood pressure was stabilized she was sent home.
Extreme fatigue set in. Followed by hair loss; clumps of hair would just fall off. Then came the rashes. All were expectations of a tough pregnancy. Angela took time off work earlier than she had planned. The pregnancy was rough. Angela was ill most of the time. Stephen started to feel the strain. At first he arranged for his mom to come and help. But the fall out escalated fast – Angela who had previously gotten along well with Stephen’s mum couldn’t stand the woman. And Stephen’s mum complained that Angela was lazy and simply making it out as if the pregnancy was too rough.
Finally, as Angela entered her third trimester, her mum in law had to go back to her farm in Kericho.
With Stephen’s mum gone, they had to consider outside help in managing their rather large 4 bedroom apartment which they had acquired in expectation of children. So they hired a housekeeper. Martha was an older woman who turned out to be a blessing for Angela.
A few weeks after hiring on, Angela experienced another of what she thought was a migraine. But in Martha’s experienced eyes it was something else. She insisted that Angela go in to hospital. By then, Angela’s sight was blurred and she could barely stand on her own. Martha called a cab which fortunately managed to get her to an emergency room in 30 minutes.
Angela’s blood pressure was through the roof. Within a few minutes of arriving at the hospital she suffered a heart attack, which was a result of pulmonary embolisms they later found out. In the course of stabilizing her, it became necessary to deliver her 32 week baby. She was in eclampsia and that resulted in uncontrolled bleeding once the baby was born by Caesarian section. Angela barely made it alive and for days after, her husband and family could only pray and wait.
Surprisingly, once in neonatal care, though in an incubator, baby Gabriel stabilized really quickly.
Not so for mum. Angela had both pulmonary embolisms, indications of clotting improperly and extreme bleeding from the womb, indications of not clotting properly. Between stabilizing her clotting factors and her blood pressure doctors found even more embolisms in the brain and lungs. Fortunately, the cardiologist called in to assist the obstetrician and obstetric surgeon had seen a similar case during his training at Beth Israel Hospital in New York. He decided to call in a rheumatologist, but went ahead and ordered a batch of rheumatology tests.
Over the next few days, Angela’s condition seesawed. Eventually her test results came back indicating Systemic Lupus Erymathotus with Antiphospholipid syndrome and secondary Deep Vein Thrombocytopenia.
Angela probably didn’t realize it then, but her whole life, her whole life with her husband Stephen, her whole life with her husband Stephen and son Gabriel was now going to revolve around the fact that Angela had Lupus.
Several years of coping, learning, unlearning, relearning, and Angela is the stay at home mum of a boisterous 4 year old. Martha is still the godsend nanny, mothershelp that Angela needs to keep her home organized. Stephen is kind, understanding, but the strain is showing. He is taking more jobs at the firm not just to prove his worth so he can get a high level of income and privileges, but so that he can over for the income Angela can no longer earn. This means longer hours at work and fewer at home with Angela and their son.
Angela does her best, when her energy is higher and the flares are in remission, she takes short term jobs here and there. But it’s really not the same. There are times when Angela feels like she has lost her identity to Lupus. The dominant part of her life revolves around making sure flares stay away, or when in flare, keeping symptoms to a minimum. Raising her son has to be within parameters set by Lupus. Dealing with her husband has to take into account so many things, such that a simple date night feels like planning a whole wedding. Sex is not spontaneous. Life is not spontaneous.
Angela is no longer Angela who grew up in Nakuru became a software engineer and married Steve then had a kid named Gabe.
Angela is now the Angela who has lupus.
But is she? Does lupus completely wipe out all other identities?
I often find it hard to use the ‘person before the disease’ rule because of how intensely lupus pervades a person’s life.
Using the chimera analogy has its problems, but it works for me. The butterfly goes through such intense metamorphosis before finding beauty as a short lived but awe inspiring winged creature. The wolf is yet another awe inspiring creature, powerful and resilient, often surviving the harshest conditions. Both are used as symbols of lupus because the lupus rash often resembles the wings of a butterfly or the facial markings of a wolf.
I often add in yet another symbol, one chosen for me by someone I love dearly. A blossoming cactus. A blossoming cactus lives in the harshest of deserts. It survives the long dry season but during the very short lived rains it blossoms with a blushing pink orchid.
When I think of a Lupie, I think of them as a combination of these 3 things. The beautiful butterfly. The powerful wolf. The resilient Cactus. That is my Lupus Chimera theory.
But my Lupus Chimera theory also takes into account that being ill does not take away our thinking abilities. Yes, we might have brain fog, fatigue, but often Lupies remain sharp mentally and quite creative.
I thought of the lupus chimera to explain to a fellow Lupie that we don’t have to be one thing only, a Lupie. A Lupie can be a mom, a sister, a career woman, A biker chick (this one amuses me), a hiker, a teacher, a bookworm, a movie nerd, whatever she is able to be.
In the process of thinking through the lupus chimera, the thought of the Chronic Creative was born to represent creatives living with chronic illnesses. While wearing their illness as a badge of honor for teaching them courage, honor and resilience, they add beauty to the world with their creativity.
With a little planning, a little help, some teamwork, Chronic Creatives can find pleasure in creating beauty, developing solutions, and even providing services in a way that can build self worth & earn us some income without draining away all our spoons.
What do you think of:
a. Lupus Chimeras?
b. Chronic Creatives?
Would you like to be a member of either? Lots of fun creative activities planned for both! In the meantime, Support She Blossoms and friends on Facebook. Talk on Twitter with @Sheblossoms about Lupus and any other ideas you might have.
The Lupus Foundation of Kenya holds support group meeting every month where you can learn how to cope, find doctors and friends to leans on.
If you have a question, or just need someone to talk to please feel free to Facebook us or talk to me on twitter!