Sunday, February 17, 2013

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.

Wednesday, February 13, 2013

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.

Sunday, February 10, 2013

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.

Thursday, February 7, 2013

Coughlympics Redux, Or Fuck you GP

It''s 2 AM here. Instead of sleeping, I am writing. My back, chest and stomach all decided to have a bit of fun tonight. It hurts to breathe, hurts to move. It's all GP's fault.

If you can remember back to my catch up posts from last summer, you might remember that I spent a chunk of April coughing my lungs out. Then I spent a week in the hospital trying to figure out why but no answers were found. When I got home, the cough came too. It hung out until the end of September, after I had the stimulator put in. It had gotten dramatically better. Until about two weeks ago.

It's back. Just as obnoxious. Just as seemingly unsolvable. I am on a long steroid taper because first we thought it was my asthma, then when I didn't respond, we lengthened the time frame to ensure adequate absorption by my broken stomach. When I still didn't respond we started a moderate-strength antibiotic. No dice.

So today, I went and had a chest x ray taken and then schlepped to see Dr, Lungs. Good news is I don't have any infection. Bad news is we have really no earthly clue what is wrong. Our best guess is bronchospasm triggered by reflux. My reflux is 100% gastroparesis caused. See? It's all GP's fault. So, for now I've been put on liquid morphine to try to turn my unbelievably touchy cough receptors off. He also mentioned admitting me several times. Not sure what the point would be, if we can't fix it. If I can't tolerate the morphine, or don't sleep well soon, I might be forced in that direction. I'm so tired. This is not a life. This is a miserable existence. I don't want to do it anymore.

Fuck you gastroparesis!

Tuesday, February 5, 2013

And She's Down!

So today was interesting. At around 3:00 this morning, I got up to go the bathroom. Thanks TPN. Routine over, I ventured back to my bedroom to pull my shorts up. I stood up, got my shorts up, then promptly lost my balance. I was able to control my descent, but I wound up on the floor. Well hell, what do I do now? I haven't fallen in a *very* long time, so was rather clueless as to what to do.

When I walked, I was a skilled faller. They taught me how to fall-and to recover from a fall -in phyiscal therapy. They fully expected me to fall, so I was taught the safest ways to do it. I think my last fall was at age 15 maybe. Anyway, my falling skills are very rusty.

I tried for a few minutes to get on my hands and knees  My knees voiced their strong objection to that idea, though. Trying to work around my running TPN was not happening. So, getting up on my own was not an option. My two choices were to wait the two ish hours until my home care nurse got there. I would be on the floor, but wasn't in danger or injured. Or I could call 911 and get off the floor. The cons to this idea were that my apartment door was locked, and the firemen would have to break in to get to me. I almost chose to stay on the floor. Until I remembered that my TPN was still running and would likely make me need the bathroom again. My bedroom is carpeted, this would've been a disaster. So, I fished my phone from beside my chair and dialed. After about twenty minutes, they were here. It took another ten minutes for them to dismantle the lock and get inside. Then it only took two guys all of two minutes to get me back to my bed,

They recommended I have my complex put something called a Knox box on my apartment. It's a box that only they have a key to. Inside would be a key to my apartment. This would eliminate the need for future breaking and rescuing's to happen. I called my complex to ask about such a thing. They had no clue.

Never a dull moment around here!

Monday, February 4, 2013

Book Three: Schuyler's Monster: A Father's Journey with His Wordless Daughter

I've always been interested in memoirs of the disability experience. From the time I was small, I have always felt a connection to the people who tell these stories. I know they get it. I'm more drawn to autobiographies of people living with a disabilities for obvious reasons. My next book broke that trend in a big way.

Schuyler's Monster:A Father's Journey with His Wordless Daughter is as the title implies,is written from a father's point of view. When his daughter Schuyler is born, he has no idea that her monster already lurks in her brain. When she is diagnosed with a brain condition at around two years old, he feels extreme guilt for not knowing that anything was wrong. The disorder, polymicrogyria effects Schuyler's oral speech most profoundly. She  has very little intelligible speech. When she is small, she uses some Signed Exact English,but because of some significant fine motor  delays signing wasn't going to be a good long term communication tool. Always resourceful, her  parents strike out to find her a voice. When she's about five, they discover Augmentative Alternate Communication (AAC) technology. The book tells the story of her parent's fight with several uncooperative schools to get Schuyler the device that she needs to be able to reach her full potential  It is by turns funny, sarcastic and heartbreaking. This father reminds me so much of my own. I even told my Dad about the book when I was finished.


Hooray for hard-working tenacious parents!

Sunday, February 3, 2013

29 Things About GP

29 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Gastroparesis and moderate probable Colonic Inertia
2. I was diagnosed in  November 2011 just having turned 26.
3. But I had symptoms since:July 2011 thank God for good doctors
4. The biggest adjustment I’ve had to make is :Finding ways to be social without food. Food is everywhere!.
5. Most people assume that I miss food. Not so. I have not been truly hungry in 18 months..
6. The hardest part about mornings are: The nausea. It overwhelms me and it takes a lot of energy to push past it and get out of bed.
7. My favorite medical TV show is: It was ER. Then House. If anybody knows of a real life House please let me know! I liked Grey's Anatomy a lot more in the early years than I do now, still watch that too though
8. A gadget I couldn’t live without is: My Ipod. Music is my happy place. Always has been, but has become critical to maintaining my sanity since getting sick. After that, my laptop or tablet are great for staying in touch with family and friends who are spread out all over the place.
9. The hardest part about nights is Right now, it's being hooked up to my TPN. I'm on it 12 hours a day now. Either 5P-5A on weekdays, or 7P-7A on weekends. I have to get up at least twice to pee. It's about to get more annoying since I'm chronically  clinically dehydrated and am finally going to let them add more sterile water to my bags. The dietitian will be happy since she's been suggesting it the last couple of weeks.
10. Each day I take Nine pills, two inhalers and a nasal spray. With the arrival of my PICC I now get IV zofran twice a day. I'm on a long course of steriods right now too so they're in the mix.
11. Regarding alternative treatments  Fine by me.
12. If I had to choose between an invisible illness or visible I would choose:Since I already used a chair before GP joined the party, I don't get a choice. I have found myself wishing that I didn't have CP a lot lately. Generally it is easier to live with CP, if only because the chair does a lot of the explaining for me. I am still really bad at making why I don't/can't eat make sense to people.
13. Regarding working and career:  My work is extremely important to me. It's become a great distraction as my health has gotten shakier. My coworkers are a great support. I will do everything in my power to continue working.
14. People would be surprised to know:  That I have seriously considered medical school several times. If I was working with a full compliment of body parts, I totally would've gone. I think my life has taught me so much that would benefit other people. I really like the puzzle-solving aspect of medicine too.
15. The hardest thing to accept about my new reality has been: The unpredictability. I just get used to a progression, the idea of needing the next more invasive surgery or intervention and it all changes again. I think of TPN as the last resort so some of the living on shifting sand feeling has gotten better. The next thing is death, and I'll be damned if I'll let that happen!
16. Something I never thought I could do with my illness that I did was:  I have made some great new friends through the online support group. Even though we will likely never meet in real life, that group has become like family to me. I hate having GP, but without it, I would never have met some truly incredible people.
17. The commercials about my illness: Don't exist  Even though GP is *not* a rare disease, there is very little awareness about it. The lack of awareness is particularly evident and problematic in the medical community. Case in point, the last time I saw my primary doctor, she asked why we were considering nutrition support. In her eyes I looked great!
18. Something I really miss doing since I was diagnosed is: Taking advantage of the great things my city has to offer. Before GP, I was always going somewhere or doing something on weekends. Now even managing to shower every day is a stretch
19. It was really hard to have to give up My conception of health. I always considered myself a healthy person. I had a disability, yes, but that didn't make me sick. Now I am very sick and have a disability.
20. A new hobby I have taken up since my diagnosis is: Blogging. It is very therapeutic for me to come here and express myself in a much more articulate way than I could manage when I speak.
21. If I could have one day of feeling normal again I would: Eat at my favorite restaurant  in the city. Then I'd go spend the day with friends at the museums or at the movies. Then I'd eat at another restaurant  Then come home and eat some more!
22. My illness has taught me: Never to take anything for granted. Eighteen months ago, I had no idea how radically life would change for me. I should've appreciated my life before a whole lot more than I did.
23. Want to know a secret? One thing people say that gets under my skin is: "But you look good!" Thanks, I know I needed to lose weight before but those three words are a surefire way to make me feel like you aren't paying attention to *how* I've lost the weight.
24. But I love it when people: Ask thoughtful questions or listen without judgment. Sometimes I just need a listener.
25. My favorite motto, scripture, quote that gets me through tough times is:I do hard things. This is something my mom often told me when I struggled to find a job. Every day I say it to myself. Yes, this is hard, maybe the hardest thing I've ever done. I can do it though because I do hard things.
26. When someone is diagnosed I’d like to tell them: Educate yourself. Find the best doctors you can. Speak up. Take a deep breath. The worst may happen for you but it will be OK.
27. Something that has surprised me about living with an illness is: the loss of control. I now feel like my body isn't mine. I'm just a visitor.
28. The nicest thing someone did for me when I wasn’t feeling well was: Call and tell me a story. Ask me for advice. When I'm miserable, I feel like it's the best gift ever to be reminded that I'm valued and important.
29. The fact that you read this list makes me feel: loved and understood.

Saturday, February 2, 2013

Book Two: Fed Up with Lunch


For the last year and a half, I have become very interested in food. My favorite shows and channels and shows are food-centric ones. At first I watched these shows dreaming of the day I could rejoin the eating world. Now that eating is no longer fun and I'd much rather do anything other than that, I watch these shows to satiate what seems to be a kind of psychological hunger. My brain wants me to feel hunger and is demanding I eat. Instead of listening to that ever insistent little voice, I watch food on TV.

As the flip side to  the obsession I've developed for good food, I've also become very interested in how food can go wrong. I've watched a lot of documentaries lately about the obesity problem. I'm also growing more and more interested in the politics of food. How everybody from the food manufacturers to grocery stores and marketing firms are either making us fat or are trying to stop us from eating ourselves to death. This interest is a lot more useful to me now than it was in the beginning. It helps me to validate that at least for now, it's alright not to want to eat. Food is bad for everyone in some way.

My second book of the year fed right into my "bad food" interest. Fed up with Lunch is the story of a school speech pathologist who decided to eat lunch with her students every school day for a year and then blog about the experience. What she found was very surprising. The food served at her school was far from the healthy fare you'd expect to be fed to kids trying to learn. Most of the food was processed to within an inch of it's life and served in slimy plastic packaging. Most of her students didn't have enough time to eat the entire meals because lunch lasted just 20 minutes. She explained that frozen fruit packed in sweet syrup counts as a fruit under the USDA's school lunch nutrition standards. She also explored how theco lack of good food in schools is compounded by the slow disappearance of physical activity built into the school day. Many schools have either done away with completely or drastically reduced gym classes and recess to accommodate shrinking budgets and shortened school hours.

The moral of the story? Pack your kids a good healthy lunch if you can. Most school food is bad food.