Books Six and Seven: "A Discovery of Witches" and "Shadow of Night"

This is a double-book post for a good reason. Deborah Harkness' A Discovery of Witches and Shadow of Night are two-thirds of a trilogy whose final part hasn't yet been released. They are fantastic.

In A Discovery of Witches we meet Diana Bishop. She is an historian of alchemy doing research at Oxford. We soon learn that Diana is a member of a family of witches and that she is a reluctant witch. She uses her magic to fix a clogged sink or to repair a broken  washing machine periodically, but refuses to let her magic influence her work as a scholar. One day, she fills out a call slip for a manuscript that is unlike anything she's ever seen and is unwittingly thrown into an adventure that spans continents and millenium.

On the day Diana discovers the strange manuscript, she is being watched by the other player in this story.  Matthew Clairmont is an Oxford scientist studying DNA. He and Diana meet and quickly fall in love. Like Diana, there is more to Matthew than meets the eye. He is a centuries-old vampire. The facts of Diana's lineage and Matthew's status as a vampire mean their  love is forbidden by the terms of an  ancient agreement struck between the three non-human races/ As their love deepens, things start to happen. 

The story continues in Shadow of Night. After discovering that she can travel through time, Diana brings Matthew back to sixteenth-century England to try to find someone who can help her understand her growing magical talent. When they get there, Diana discovers that Matthew is harboring many secrets.

Part Harry Potter, part The Historian, these books are a fun escape. I am very excited to see how the story ends.

Escape Fire: The Fight to Rescue American Healthcare

Last weekend I watched the feature-length documentary, Escape Fire:The Fight to Rescue American Healthcare. It was enlightening.  It talked about what was broken in America's healthcare system. The thesis of the film seemed to be that while systems are in fact to blame for the dire strain our healthcare system is under, it is us, the people of this country who bear the brunt of the responsibility.

How did I come to that conclusion? Because the film spent the majority of it's two hours enumerating the high costs and consequences of obesity related illnesses. All of the experts interviewed said that our systems need to devote more resources to helping people prevent costly illnesses like diabetes, strokes  and heart attacks. They were emphatic that we don't have a "health care" system, rather we have a "disease care" system that is reactive rather than proactive. One example of this was a woman who had uncontrolled diabetes and high blood-pressure. These unchecked conditions led her to undergo TWENTY-SEVEN different cardiac procedures that included stenting and open-heart bypasses. Twenty-seven. Unbelievable. Once she was seen by the Cleveland Clinic her chronic conditions were addressed. She required another bypass even after that.

I don't dispute that obesity is epidemic in this country. Two-thirds of us are over-weight or obese. Fast food is everywhere, even in schools. I also can't deny that the illnesses that result from obesity must be a drain on our healthcare system.

You may have sensed there's a but coming. There is.


BUT, there are a slew of chronic illnesses and conditions that are not triggered by lifestyle choice and which cannot be reversed once they manifest. Gastroparesis is one of them. More resources should be spent increasing awareness among the medical community of the impact of these poorly understood conditions. The chronically ill deserve compassion and appropriate care. Too often  we get brushed off, told it's in our heads when we have a defined illness.

So yes, doctors need to be able to spend more time with patients  Yes Medicare needs reform. Finally, yes society needs to address the forces behind our obesity problem. Don't forget the rest of us, though.

The Chronic Illness Clock: A Treatise on Waiting

In the last two years, my conception of time has changed dramatically.Before GP, my day was governed by mealtimes, commute schedules, TV shows and sports events. Now, my life revolves around med schedules, nursing schedules and when I need to take TPN out of the refrigerator.I don't need a clock to tell me when four hours has passed. My escalating nausea level does that for me. I don't need to know when typical mealtimes are, I no longer feel hunger. On the rare occasion that I do, the urge doesn't last more than about five minutes leaving me little time to actually act on it.

Other than the practical day-to day realities of time when living with chronic illness, time plays a huge role in my life with both illness and disability. At the beginning of my journey with gastroparesis, I kept waiting for this horrendous "stomach thing" to go away. That's why I didn't dash right to the doctor. No one thinks that a symptom like nausea will become chronic and will effectively ruin your life, Once I realized I needed help, time seemed to crawl. I was always waiting. Waiting to see that first clueless GI. Waiting for the things he told me to do to help me. Waiting to see the second GI. Waiting for the testing to be done and then the results to come back.

Even after my diagnosis, I was still perpetually waiting. Waiting to see the Motility Specialist. Waiting for the testing the surgeon needed to be done and results to come back. Waiting for surgery dates. Waiting to recover. Waiting to see if I had any improvement from a surgery. I'm still there when it comes to the stimulator. I ask myself daily WHEN will it start working? When will I be able to ditch TPN? If anyone could tell me that, it would make the huge changes I've been forced to make to accommodate the need for TPN worth it. All of this waiting has got to be worth something, If not, I'll feel like all of this has been a waste of time.

I'm tired of waiting.Get with the program body.

On Inclusion Part One:The Early Years

Today I finally watched Including Samuel. The documentary tells the story of one family's journey to educate and integrate their son Samuel, who has cerebral palsy. I've wanted to watch the film for a long time. The family is from New Hampshire, my home state. I also consider myself an inclusion success story.

I began my public school career at the age of three. I had been receiving therapy through my county's Early Intervention program since about nine months old. Federal law says that at age three services should be provided by the public school. So I was bussed about an hour each way every day to a preschool program in another district that was tailored to meet the needs of students with disabilities. After that first year, my parents led the charge to bring the teacher from that program to my district. The program that was born out of that idea still exists today. I  spent two years in the preschool program. The hope was that with the right support my motor skills would catch up and I could join my classmates. At age five, I became one of the last kids to participate in what was called "Readiness." It was a class between preschool and kindergarten  I spent a lot of time working to improve my fine motor skills.

 I had a fantastic one-on-one aide in those years. She was literally an ever-present helping hand, She also learned the range of motion routine that we needed to do  twice a day to maintain my flexibility. I admit it wasn't always easy to have to be pulled away from my class to do the stretching, but as I got older we were able to find time during the day to do it that was minimally disruptive. Eventually, we did it either during gym or recess.

Aside from needing more physical help than my peers, I and my parents wanted me to be treated just like the other kids. I did the same classwork, took the same tests, completed the same projects as everyone else. I had accommodations  yes, but academic expectations were no different for me because of them. Starting in second grade, I was provided with a computer for use in completing class and homework. This accommodation was made once my school team realized that writing by hand was never going an easy thing for me. I was provided a laptop every couple of years through the end of high school.

There were battles at every turn it seemed. I participated in a summer school program of sorts focused on maintaining my physical abilities over the summers and minimize the risk of physical regression. My parents always went to the mat to get the district to continue paying for my aide so that I could start each year in the best shape possible, One year, the district even threatened to cut my aide's job during a round of spending cuts. I wrote a speech and was ready to deliver it at a school board meeting when the matter was somehow resolved without any job losses.

There's a lot more to say on my experiences with inclusion, so I plan to make this a series of posts. Stay tuned for more!

Book Five: Room

Imagine being five years old and never going outside. Imagine that all you know of the world comes from a television set. That is Jack's reality in Room. His mother had been kidnapped two years before his birth and imprisoned in a sound proof garden shed. Jack grows up in the shed and is comfortable there. Until the day his mother decides to show him more of the world. This is the story of what happens after a daring escape. I can't say too much without giving it away. Trust me, just read this book.

Book Four: The Spiirit Catches You and You Fall Down

This next book was fascinating. Part medical case history, part sociology text with a smattering of anthropology thrown in for good measure. The Spirit Catches You and You Fall Down chronicles one family's journey through America's broken healthcare, immigration and social service systems.

In Western medical parlance, 18-month old Lia Lee has severe epilepsy. Her seizures are often so severe as to require her to need ventilatory support and she often contracts aspiration pneumonia when she inhales stomach contents into her lungs. Her pediatricians in Merced California prescribe the standard anti-seizure medications. Lia continues to have several grand mal seizures a month. It is determined that the little girl's parent's are not giving the proper dose of medication, Lia is removed from their care  and made a ward of the State for almost a year. She is returned to her parents. Then a catastrophe strikes.

To Lia's Hmong parents, it's clear that one of their precious daughter's souls has gone missing. They do not speak English and have limited understanding of the doctor's direction as to how they should treat her seizures. They look on her epilepsy as a gift. In their culture, people with epilepsy are often marked as shaman as their seizures bring them closer to the Gods.

This is the story of what happens when two cultures clash in huge ways. It raises questions of cultural sensitivity in medicine, what it means to be a good doctor, a good parent, even shedding new light on the definition of disability. Simply incredible.

Why?

I am not religious in the slightest. Wasn't raised to believe anything in particular. As I have aged, I've started to believe that *maybe* there's a higher power. I just can't bear to think there isn't some reason for all that has gone wrong in my life. I am at a low point right now. The way things are going is just SO unfair. Why did I have to be diagnosed with gastroparesis? Why was median arcuate ligament syndrome not the reason behind it all? Why didn't I respond to the stimulator like I expected? Why did my only option have to be TPN?

Why, when I was already born in a body that fights me every single day? When I already have to work ten times harder to accomplish the simplest things? I always think it's no good to complain about how unjust my life is. I figure I lost any claim to living a fair life in the common meaning of those words, when I was born with CP. I can't help it though. What did I EVER do to deserve any of this? All I've ever done is try to live a good life. I fought so hard for this life, and I'm slowly losing my grip on it. I can't give up. I know that. Giving  up would be tantamount to suicide  This disease has stolen so much from me in the last 18 months. It will NOT kill me. If I'm sure of nothing else right now, I'm sure of that. That doesn't mean I don't wish it away with every thought every single day.

People say that God doesn't give you more than you can handle. Yes, yes he does. I am desperate for something to change. I'm not  strong enough for this. It will break me soon, I can feel it. I know these things are meant to show people's strength but I happen to have plenty of strength. I do not want to be tested. Please, I'm bruised. Leave me alone.