Tuesday, January 20, 2015

Home Is Wherever I'm With You

When you finally go back to your old home, you find it wasn't the old home you missed but your childhood.

I took my dog Whiskey for a long walk this morning to explore our new neighborhood. Even though we've been moved into our new home for over a month now, the weather in Houston hasn't really allowed me to go out much (rain, cold yuckiness). But, it has cleared up the last few days and the swelling in my joints is minimal so I couldn't resist. 

The backyard...and Whiskey

I love the outdoors, despite it's potentially negative effects on my health, it makes me feel whole and alive, so for now I will enjoy it as long as I can. In fact, this post is being written on my new back porch. And I feel so at peace. 

Well, as Whiskey and I explored the new "hood" I realized what I loved about it, why I have always been drawn to older suburbs rather than new ones: they remind me of the homes/houses I grew up in. As a military brat I am from "nowhere and everywhere all at once." I have always struggled with the concept of home, because for me, it was always just a "house until"... There was always a set expiration date. I knew we would move, it was not permanent. (For more on this part of my life read my memoir Island of Dreams)

And yet, my parents DID manage to make each house feel like a home. With warm yummy smells, a garden, parties, family and friends, love, religion, comfort and overall happiness. The houses I grew up in were all built in the 60s, 70s and 80s with shag carpet or wood floors, wood paneling (my new house DOES NOT have wood paneling, thank God), gas stoves, large back yards, wire fences, tall 30 year old trees and a lot of quiet. 

The front of the new house!
My new, permanent home is much the same. Sure, it's been remodeled to look new on the inside, but the neighborhood itself feels like a flashback to a much simpler time in my life. I can honestly say that I was blessed with a very happy childhood. We made popsicles in the ice tray during the summer, ate watermelon till we got sick, splashed around with a hose, ate home cooked meals at the dinner table every night, and went on family road trips at least once a year. 

We lived the American dream. I was an extremely healthy child who grew up in a home where my dad worked and my mom stayed home raising the kids until we were all in school. It was quite idyllic. And truthfully, I am thankful for that. 

Me on my 6th or 7th Birthday. 
My childhood may not have given me the life experience to deal with something as big and as life-changing as chronic illness but it did provide me with the support system to do so. My mom gave me faith by taking us to church every Sunday. My father gave me strength by always telling me to just shake it off (when I fell off a bike, or didn't get a part in the play). My sister added color and creativity. My brother showed me resilience and confidence by introducing me to theatre and writing and poetry. Our military life has allowed me to always go with the flow and embrace change. I learned to depend on myself and take care of others by being a latch-key kid who made my brother and sister an after school snack because mami had to work when papi went to war. It wasn't always easy, but it wasn't a childhood that hurt. 

In recent months, I have come to the conclusion that most people either have crappy childhoods and a pretty awesome adult life or a great childhood and a pretty crappy adult life. (Some people get a raw deal on both ends sometimes which is unfortunate) Which, at first made me quite cynical, because after all, adulthood lasts SO MUCH LONGER than childhood, but now, after some deep reflection, I realize that our childhood is what shapes us as a adults. It creates our character and informs our decisions as we get older. 

My favorite room in the house- the library/office
I can't imagine how I might be dealing with chronic illness had I also had an ugly childhood (alcoholism, depression, drugs etc.??) I can say that I am grateful for the ease and joy with which I lived my young days. I reminisce about those days often as it brings me comfort and hope  when I don't know if and when the pain or fatigue will end. I deal with never ending facets of these diseases by praying, meditating, calling my mom, taking care of myself and my husband, and knowing that if simpler times are behind me, I can still believe in simpler times ahead. 

It's quiet here. The sunlight comes in through windows. I hear the train whistle every night and every morning. I cook happily. I clean out of pride. Even though I miss our old townhome, the one where Lupe and I spent our first few years together, it never really felt like my home. I tried very hard to feel at ease there, but I just never could. I believe that living in a house and in a neighborhood that reminds me of simpler, happier times, a home we bought and will build together, will be good for my soul and my overall health. I am hoping that this new house, in this old neighborhood will be the place where Lupe and I can plant our roots and watch our lives grow (in whatever way the Universe intends).  It won't be easy, but I also believe that it won't hurt. 
Closing day...we bought a house!

Sunday, January 4, 2015

Looking Back, Moving Forward

Happy New Year! Time let go of the old and look forward to the new.

2014 wasn't easy but I was blessed. I lost a fingertip but gained a new house. I turned 30 and went back on hard core meds. The rest of the year is kind of a blur to be honest. I spent a lot of time in the hospital. A lot of time in pain. A lot of time recovering from one surgery or another. A lot of time "finding the joy." A lot of time crying and asking why. A lot of time trying to be grateful.

In 2015 the only thing I resolve to do is finish my second book...oh and continue doing the things that make me happy (cooking, yoga, loving my husband). I have no intention of trying to write every day, or drink more water, or lose weight or anything that requires a certain amount of dedication that I just won't be able to commit due to the unpredictability of my life and flare ups.

All I plan to do is take it one page at a time. (My book that is) If I can write more often, I know I can get it done. And I know that now is the time.

Look forward to progress blog posts in the coming months! That's it for now...I'm emotionally drained at the moment and have no more words of wisdom or insight to share. I hope you and yours had a great holiday season...till next time!

Hugs & Chocolate

Sunday, December 14, 2014

A Book Review

"Great books help you understand, and they help you feel understood." –John Green

Laurie's Website
I realize that I have never done a book review on this blog. And as a writer, I know that is somehow wrong, very wrong. So I apologize to my readers for taking so long to do this, but perhaps that is because it has only been recently that I have intentionally looked for and have been reading books by and about people with chronic illness.

I recently felt that I wasn't getting anywhere with my second memoir and needed to be able to approach the story more objectively. I felt like I was spinning my wheels, complaining too much, and struggling to find an adequate and fulfilling ending. So, as any good writer would do, I stopped writing and decided to start reading. I decided to focus my reading on what I found out are called "illness narratives." Stories, both fiction and non-fiction abot illness (living with it, managing it, understanding it etc.) Over the summer I read Autobiography of a Face by Lucy Grealy (Cancer-not as great as I'd hoped), The Fault in Our Stars by John Green(Cancer-MUCH better than expected), and Waiting for Daisy by Peggy Orenstein (re read it, very objective book about infertility).

As I continued to research books and illness narratives (preferably about something OTHER than cancer, not hating, just feel like cancer is the Marsha Brady of illness) I came across the non-fiction sociology book In the Kingdom of the Sick by Laurie Edwards. I was intrigued by the book reviews, the prescription pill bottle on the cover and the very catchy title. I recently made a comment on Facebook about how I used to live in the light but now I live in the dark but can see the beauty of the stars, and the title of this book actually comes from a quote by Susan Sontag precisely about that:

So, I picked up the book, delved right in, and have learned SO much.

For those of you that follow me on Facebook, you know I've been ranting and raving about this book for a couple of weeks. I'm about 75% done with it (have slowed down my reading due to moving) but even if the end sucks (which I doubt it will), I have gained a new and better understanding of not only the medical community, but of where my own biases, insecurities and overall mentality about my chronic illness comes from.

And guess what...all the feelings I have felt in the past (and I'm sure many of you have also)...THEY'RE NOT YOUR FAULT! And those feelings are real, it's not in your head! I'm not neccessarily talking about feelings of pain, I'm referring to those feelings of not being heard and understood by your doctors and nurses or those times you felt belittled by a male doctor (if you're female) for dismissing your symptoms and telling you it's in your head. Guess what? You now have the priveledge of blaming our society, and the social bias against accepting and understanding chronic illness and pain.

These are just a few of the insights I've gained from reading this book so far. Although I started reading the book a little apprehensively because I didn't want to be bombarded with technical terms, cold statistics, hard to read jargon, and a boring timeline of illness, after just a few pages in, I realized this book was none of that.

What I love about this book is the following:

1. Laurie Edwards suffers from chronic illness and pain herself. She has made it her job in life to study the psychosocial effects of illness, and to advocate for patient rights. I trust her research, personal experiences and information more than I would someone else's.
2. The book effortlessly combines meaningful statistics and information with real life patient stories and anectdotes.
3. She dedicates two whole chapters on breaking down why women's health issues are so misunderstood, undervalued, and misdiagnosed.
4. She makes it a point to discuss illnesses that are not just cancer.
5. She really helps you understand why doctors struggle with diagnosing and treating chronic pain.
6. It's easy to read, supported by data, and provides various sides of controversial issues.

What I wish this book did more of: (Although I'm not finished, so it may do this near the end, but doubtful)

1. Study the different experiences with doctors and hospitals of minorities with chronic illness vs. those of caucasians. She often makes a note of how there are differences but doesn't expand on them.
2. Discuss how (socially and culturally) minorities manage chronic pain and illness differently and how that impacts survival rates, treatment etc.

As you can see, there is not much more that I would change or add and the little I would like to learn more about it is clearly based on my own racial bias. This is a book I wish I would've read the day after my diagnosis. It would have saved me so many years of heartache, frustration, guilt and shame. But perhaps it came into my life right when I needed it most, I don't know if I would have had the same openness to accept the information then as I do now.

This is a book I want to gift to all of my chronically ill friends. I highly recommend reading it, as anyone, from a health professional to a patient to a caregiver can gain a lot of insight on how and why the medical community is the way it is and why we think and feel what we do when we see doctors.

I'd love to share more about all the things this book has made me feel, but I'll just let some of my favorite quotes and "aha" moments do it for me...and perhaps it will entice YOU to read the book or buy it for that friend of yours that has Fibromyalgia or MS.

Aha Moments and Favorite Quotes:

Chapter 1:
"Chronic illness is the leading cause of death and disability in this country, with seven out of every ten deaths attributed to chronic diseases"(Edwards, 11).

"'The fact that you're just not going to get better seems unbelievable to most people.....There must be something you can do that you aren't doing.....something should work, and if you're not better, then you're not working hard enough. It's frustrating, it's everywhere...and it's just wrong....I can't think or eat or exercise my way out of these illnesses, no matter how hard I try'"(27).

Chapter 2:

"The very nature of chronic illness--- debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress--- is antiethical to the cult of improvement and enhancement that so permeates pop culture" (34).

"'For decades now, life expectancy has been rising. But the longer we live, the longer we die'"(Gever/Edwards 44)

Chapter 3:

"We should not treat incurable people as unsolvable problems"(67).

Chapter 4:(Women's Health Movement and Patient Empowerment) 
Probably my favorite chapter

"For years, it didn't occur to me that I could argue with my doctor's results, even if they were contrary to what my body was telling me" (74).

"'Just because we don't understand the cause doesn't mean it is not real...This is part of what's so bad about this disease. People feel responsible for it'" (75).

"A survey taken by the [AARD] found that 45% of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment" (78).

"Unless you live with and experience the looming threat of symptoms firsthand, you can't possibly understand the emotional and physical toll of chronic illness" (85).

Chapter 5:

 "Another potential consequence of cause-related marketing and activism is the expectations put on patients...'the tyranny of cheerfulness' is associated with many of these events (runs/walks). We know how comforting and necessary images of empowered survivors are. However such emphasis doesn't leave room for people who don't see this diagnosis as a lucky gift..The issues apply with chronic illness...For one, there is obviously no finish line...we just live with the symptoms that wax and wane...Without the finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases" (100-101)

"The phrase Tired Girls has stayed with me for years, because I know so many Tired Girls, because when some of my conditions flare, I am that Tired Girl who pays for the eneregy she expends...The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better...She is far removed from the cancer survior triumphantly crossing the finish line....[she] has few cheerleaders...and often... wouldn't even know how to define what or where [her]  finish line is" (103).

Chapter 6:

"'The Girl Who Cried Pain' found that women's reports of pain are taken less seriously than men's and they are less likely to receive aggressive treatment than are men. In fact, research shows that men who report pain are more likely to receive painkillers...while women are given antidepressants" (115).

"Lack of understanding from physicians is both an individual and institutional problem; even in the last years of the 20th century, pain was not an established part of medical school curricula"(118) - My WTF moment

"While chronic pain is as prevalent as cancer, cardiovascular disease, and diabetes combined, the NIH spends 96% less on research on chronic pain than on these conditions"(126).

That's it so far...I am in the middle of Chapter 7 of 9 chapters total. There were so many more quotes, but I'll let you pick up the book to read more. I am fascinated by what I've learned so far and intend on picking up her first book: Life Disrupted: Getting Real About Chronic Illness in Your 20s and 30s

I truly appreciate this book because it has allowed me to better understand why my doctors behave the way they do, how fortunate I am to actually be living in this century and not just a few decades earlier when technology wasn't as advanced and Scleroderma was a death sentence. And even though I get frustrated by the lack of answers I get at hospitals and doctor's offices, I now know that the field of medicine is still a very new field and doctors are only doing what they can with the little knowledge they have. While I will always demand respect as a patient and intend to have a say in my care and treatment, I cannot get upset with the trial and error process of treating my disease anymore.

It is what it is. Kind of like when I try a new lesson on my group of 25+ students and somehow only 12 get it....what do I do? I reteach, and try again until I get it right. But you know there's always that ONE kid...either way, it doesn't do any of us any good to get mad at me or the kid(s)...we just have to keep trying till the light bulb turns on, or in my case, the treatments work.

I hope to use what I learned from this book to approach my memoir more objectively and reflect on past experiences with my illness and with doctors and hospitals in a more compassionate and understanding way. I also hope it will inform and guide my future interactions with the medical community so that I can receive better care and learn to thrive in life and not just survive.

My next book review will be on The Wounded Storyteller by Arthur Frank which discusses the literary theory and structure of illness narratives. (Basically the three stypes of narratives that authors can use to tell their story). I am also still very much interested in reading memoir about illness so if you have any recommendations, please share!