Friday, May 31, 2013

Book Review: Hot Cripple by Hogan Gorman

Property of Hogan Gorman, found via http://www.hotcripple.com/

I had to pick up this book. Something just called to me - I'm not sure if it is the hottie on crutches or the bit about the health care system. But I am glad I read this book.

Hogan used to be a model traveling around the world and then began to waitress in New York City while auditioning for acting gigs. One day, she's walking to work with her favorite chai in hand and is hit by a car. With how bad off the car was, it was clear that Hogan should have died. Instead, she lived and began a fight lasting entirely too long navigating the medical world with no insurance and trying to get help from several organizations.

I'm not going to lie - growing up being sick I immediately began judging this girl at the beginning of the book. She is a fucking model right? She's gorgeous and has had the opportunity to live a life that I wish I could have. She was always one of the beautiful girls and knew it. She needed a wake up call, but probably not one calling for what she's gone through. This book is about really coming to terms with illness when you're not used to it and learning to fight and learning that it is okay to accept help - I definitely have issues with the last one.

At the end of the book, I felt like I could identify with Hogan more than I thought I ever would be able to. She clung to her fashion life when she was sick because it was what was left of what she assumed was the real her. I'm just finally being okay delving into fashion, accepting that my body the way it is now is really me finally. I mean, it only took 20 years right? Nonetheless, accepting what you are or have gone through is really one of the hardest things that anyone can do let alone anyone with new and long lasting limitations.

I think it is a good book to read, but probably better for those of you who lived an actual life before falling ill. It's probably a million times easier to connect with the author, and that is kind of critical for these memoir types of books. Plus, I take issue with how she doesn't necessarily think about invisible illnesses in the book - i.e., getting pissed with people and automatically judging them as different because they're normal.

In keeping with how I seem to write every book review, enjoy some quotes!

I have been issued a food stamp card with a rather unattractive picture of myself on it. I will now be allotted 141 dollars a month for food, which breaks down to about four dollars and seventy-something cents a day. That's what we poor folk are allowed to eat a day... four dollars and seventy-something cents' worth of food... The card is in the middle of my kitchen table, just begging to be used, but I don't have the fortitude to accept it quite yet. I find myself picking it up and staring at it in disbelief several times over the past day. I am  scared of this little piece of plastic, scared to walk into a grocery store and use it, scared of what it says about me. If I use this card in public, I am branding myself a failure. There is a stigma attached to people on public assistance in this country - that they are lazy, that they should get a job, that they have a welfare mentality - and it has clearly crept into my subconscious and is wreaking havoc on what little ego I have left. (120-1)

I have almost made it past the Mohawks and combat boots when a guy with purple hair says, "Man, that is so cool... it's not that often that you see a hot cripple." I can't believe he just called me a cripple. You can't do that. That is so un-PC that it's almost to XYZ. It's wrong and bigoted and prejudiced. Only I can call myself a cripple, and I do it in a self-depreciating way, but you can't. I don't see you limping on a cane or in braces. You are not part of the group. If you were injured or disabled, you would be allowed to call me a cripple, and I would say, "What's up, gimp?" But you're not, so, stranger, step softly when you walk, and don't fucking talk. I want to go all Rosa Parks on his wannabe punk-rock ass and blurt out this monologue in my head... (154)

I feel like an alien in my own country. Every time I turn a corner I seem to hit another brick wall. My body feels like a prison. The pain is still unrelenting. Maybe they're right; maybe I'm not getting better, but I try. I never miss a doctor's appointment; I follow their instructions and take my prescriptions; I go to physical therapy (or as I like to call it, gimp gym) as if it were a religion; I eat a healthy vegan diet on a food stamp budget of four dollars and seventy cents a day; I do children's memory games on my computer to try to regain my short-term memory and strengthen my brain. I think it might be better to be an animal; if an animal is sick or injured and not getting "any better" they are put down, so they don't have to suffer. We have a Humane  Society for our four-legged friends, yet I am struggling to see any sense of humanity in the society I am living in. (159)

I am sobbing like I have never sobbed before, and I can't stop. I have reached my breaking point, the end of my tether. Whatever you want to call it, I am there. I can't take it anymore: the lack of humanity, constant pain, doctors who can't fix me, memory loss, food stamps, disability, Medicaid, lawyers, poverty - I'm done. I don't want this life. I find myself turning almost without thought and walking toward the Brooklyn Bridge - the bridge I used to run across when I was healthy - and with each sobbing step I take I am more determined and convinced that this is the only way out. I've had a few friends end their own lives, and I didn't understand how things could get so bad that someone would want to kill themselves. But now I understand. When you wake up and it's dark and you know that there is no hope that today the clouds will drift away because you've been hanging on every day, for days, months, maybe years, and the sun never comes. When you've been down so long that a smile feels wrong. You're not fun anymore; all you talk about is your misery and your pain, and people listen (sometimes), but you watch their eyes gloss over in a distant stare. They can't help you; nobody can, not even yourself. You dress each day in something you used to love, praying that it will magically transport you back to a time when you were happy, but it never does. You've stopped dreaming, you've stopped hoping, and you've stopped living. So this final act will merely be a formality. Finally, it will stop. Finally, I will have peace. Finally, there will be relief. I understand now, my friends, and I am coming to meet you on the other side of this cesspool that's called life. (190)

Sunday, May 26, 2013

30 Things About My Invisible Illness You May Not Know, 2013 edition

I've done this survey a few times but every time I do it things change. Since I haven't done it for a while, I thought I'd give it a go. Enjoy!

1. The illness I live with is: Still's Disease (juvenile onset juvenile idiopathic arthritis), fibromyalgia, hypermobility, asthma, Sjogren's Syndrome, psoriasis, gluten intolerance, scoliosis, and bouts of uveitis (I had to look this up on the blog because I can't even remember it all now Jesus)

2. I was diagnosed with it in the year: Still's - 1994; fibro - 2012; asthma - 1993?; psoriasis - 2010; gluten intolerance - 2011; scoliosis - 2012. The others have been mentioned multiple times so I'm not sure? That's bad haha.

3. But I had symptoms since:  Still's onset was in 1993, but the others all follow this so in reality I have no clue.

4. The biggest adjustment I’ve had to make is: slowing down. Since I can remember I've always done a lot - I did plays in high school and didn't get anything less than a 4.0 until my junior year. I was one of the valedictorians. At one point in college, I was taking 4 classes and working 3 jobs. Most of my working life I've had 2 jobs, but I can't do that anymore. Resting is terrible for me.

5. Most people assume: I'm fat because I eat twinkies all day and sit on my ass. They don't know about the 2 years on steroids and the terrible hungers. They don't know that I work myself to the bone and still barely lose weight no matter what I do. And they almost always assume when I use my parking placard that I'm using my grandma's illegally. I love the stares I get, I really really do.

6. The hardest part about mornings are: Actually waking up. My night time meds make me incredibly woozy so it is really hard to physically wake up to my alarm clock.

7. My favorite medical TV show is: House, always House.

8. A gadget I couldn't live without is: my laptop/phone/iPod touch. They are my connections to the outside world so that even when I feel the worst I can still take part in being a part of the world. Plus it's where most of my friends are :)

9. The hardest part about nights are: both getting to sleep and dealing with the Still's. It is most active at night, so that is when I get my fevers, chills, and rashes the worst. After about 5 pm I look a mess no matter what I do.

10. Each day I take approximately 14 pills and I do a shot once a week.

11. Regarding alternative treatments I: think some of them can work but I trust those that have been scientifically proven because most of the ones that do work only do so for specific illnesses and have little impact on autoimmune arthritis. I do believe massage and changes in diet can help but by no means can these things cure us.

12. If I had to choose between an invisible illness or visible I would choose: I'm down with what I got. There are plenty of days where these things aren't invisible - people just don't know how to look.

13. Regarding working and career: I miss having a job that made me feel more important and helpful than my current one - don't get me wrong I know I help so many people captioning calls for the deaf and hard of hearing, but I don't usually get admiration save from my supervisor. My volunteering efforts are my real jobs.

14. People would be surprised to know: Just how much pain I am in every single day and the fact that I'm not on narcotics to deal with it would probably blow their minds. Just right now I'm hitting a 4.5 on my pain scale, but I feel like to others this could be 7 or 8 territory.

15. The hardest thing to accept about my new reality has been: losing my independence. It isn't like I've lost that much, but I'm very stubborn and I will do things myself no matter how much it hurts... or at least that's how I used to be. The fiance had to help me walk to my bed last night - 20 feet I think. He often has to help me take off certain clothes like sports bras because of how my shoulders hurt. I know he loves me and would do whatever I asked, but I'd rather think of him taking off my clothes in a funner way than it happens.

16. Something I never thought I could do with my illness that I did was: I FUCKING RAN. I haven't run a lot lately but oh my god. I used to run a lot in high school and I lost it to this disease. The day that I decided to run again earlier this year I was almost in tears at the gym over how proud I was. Every time I run and push myself a little further, from running half a mile to three quarters say, I can't even describe the feeling I get.

17. The commercials about my illness: well, actually, there aren't any commercials about Still's because like no one knows it fucking exists except for those of us affected by it and other volunteers/doctors/etc. I will say arthritis commercial piss me the fuck off though. "Hooray, I can run with my puppy because of my shots!" is not the norm. And a certain golfer certainly has got moon face from steroids along with his Enbrel...

18. Something I really miss doing since I was diagnosed is: I've been sick since I was 5 so... um... I guess everything? Everything I've done really has been post diagnosis and with a good amount of pain and fatigue involved so it is hard to answer this question.

19. It was really hard to have to give up: graduate school and being spontaneous definitely. I'd love to wake up on a Saturday and look at the fiance and say "Hey, let's go hiking today" but I really can't. Even when we are able to go, I have to carry certain things with me that make it a pain in the ass. Grrr.

20. A new hobby I have taken up since my diagnosis is: Again, being sick since I was 5, this would include just about everything but singing, dancing, and Disney movies. But clearly I'm enjoying blogging.

21. If I could have one day of feeling normal again I would: choose to save that day for my wedding day. Please please please I need this to happen.

22. My illness has taught me: virtually everything I know about perseverance and fighting. I often wonder what I would be like without this illness and how lame I would be haha.

23. Want to know a secret? One thing people say that gets under my skin is: when people fucking tell me to take a Tylenol or do xyz or take these herbs or just stop taking meds or when my soon-to-be-ex-primary-doctor treats an issue I'm dealing with with less importance because he thinks I'm a hypochondriac or assumes that something doesn't hurt when I'm used to 8s and 9s on the pain scale and might not realize how that changes things. Fucker.

24. But I love it when people: do something to show me they care. Some of my favorite experiences have been when someone recognizes I'm having a rough day and does something to help it get better, whether it means offering physical help or emotional care.

25. My favorite motto, scripture, quote that gets me through tough times is: "Living with Still's can still be life." - Laura Jayne Kenyon

26. When someone is diagnosed I’d like to tell them: learn every single thing you can about your illness. Discuss an elimination diet to see if foods make it worse. Connect with others to form not only a support system but also a group that can analyze new treatments for each other and such.

27. Something that has surprised me about living with an illness is: that no matter how much I hate these fucking diseases I wouldn't be any other way. All the kids I know with this need someone who can help their parents understand and if I can help just one parent help make their child's life better then everything I have been through is worth it.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't even pick out one thing. I can say for sure that no one helps me like my fiance does, from making food special for me that he knows I like so that I eat even when I have no appetite due to this disease to trying to carry me to the bathroom even though maybe I am a bit too heavy and he's not quite strong enough for him to do that haha.

29. I’m involved with Invisible Illness Week because: I am tired of being judged, but more than that I don't want the kids I know to be judged and to feel the fire unbelievers can have in their stares or their words. It has to change.

30. The fact that you read this list makes me feel: like you are awesome!

Friday, May 24, 2013

On the DL: My two days listening to the Dalai Lama

Many of you may know that my bachelors degree is in religious studies. I've always loved different religions but never really agreed with one myself until I took a course my sophomore year of college on Asian religions, which is the course that made me a religion major instead of a chemistry or math major. I had been doing meditation and yoga since I was 12 (thanks Seventeen magazine!) to help with my pain but I only knew vague bits of the religions that made these practices common.

Buddhism is a wonderful religion that, much like Christianity and Islam, has different sects and different focuses depending on where you are and who you learn from. The professor I had for this class was one of my favorites and the next semester I ended up taking two or three classes in a row with her. She herself practiced Buddhism and Christianity together - something easy to do as most schools of Buddhism don't really address at all the notion of gods. It's not that Buddhism is atheistic, but instead it is non-theistic. Many call Buddhism more of a philosophy than a religion, and it definitely can be both.

Buddhism rests upon the Four Noble Truths:

  1. Life is suffering, plain and simple
  2. The origin of that suffering is attachment - cravings, wants, material goods, etc
  3. We can end that suffering through attaining Nirvana, or freedom from the cycle of rebirth (samsara)
  4. We end the suffering and reach Nirvana through the middle path, a balance between being over indulgent and an ascetic. This path is outlined in what is called the Eight-fold Path (right understanding, right thought, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration).
Many people I know with chronic illnesses find Buddhism extremely attractive, given that the first notion of this religion is about suffering and how it is so prevalent in our lives. We can't escape the suffering, and so there is a huge attraction to the notion that if we do work hard enough we can lessen and eventually end that suffering.

During my studies on Buddhism, I sort of fell in love with the Dalai Lama (don't know who he is? Check out this link). He talks about how compassion and love are at the center of all religion and how we all just want to be happy and not suffer. This isn't from a primarily religious perspective that he says these things either - what he wants is for each of us to treat each other with compassion and love and to make the world a better place. For him, Buddhism is the tool he uses to promote that but he doesn't downgrade other religions and believes that they can be just as beneficial - that it merely depends on what religion helps you to bring compassion into the world and feel fulfilled. He believes in humor and the ability of laughter to heal and add to our lives. Needless to say the man laughs a lot and his laugh is more infectious than a baby's laugh. I also feel the need to add that Michael Palin met him once on one of his travel shows he did after Monty Python, only to have His Holiness be more excited to meet Michael than Michael was to meet him! His Holiness said something along the lines of how a huge part of why he had a satellite dish was not to keep up on the news but so he could watch Monty Python reruns on BBC. He has got to be the coolest person ever.

So a few months ago when I learned that His Holiness would be in the city I live for two days giving speeches, I freaked out. When I was done half crying and jumping up and down like a four-year-old, I got tickets for both days.

The first day His Holiness spoke on a poem written by a fellow Buddhist after an intense meditation session called In Praise of Dependent Origination by Je Tsongkhapa. He was only supposed to talk for two hours, but ended up talked for almost three and barely at the end touched on this poem. I definitely didn't mind though! He spoke so much of the time about Buddhism as a religion, but also as a philosophy and what it means to have compassion for others. I honestly don't have many notes to share with you from that day because I was just so in awe of how lucky I was to see him.

The next day, he spoke as a part of a panel on global health and sustainable well-being as a part of the Global Health Institute from the University of Wisconsin-Madison. There were economists, people with the WHO, psychologists, etc. I took a ton of notes there, both because I think the shock had worn off and because I felt like I wanted to share some of the information from this panel with you all. I'll indicate the person's name and then in later spots their initials from whom the information came. The Dalai Lama will be DL for example.

  • Richard Davidson: Stress decreases growth of new brain cells and inhibits connections between cells
  • RD: There was a 2012 study on 2500 health plan members over the span of one year. For each increase in well-being an individual was less likely to go to the hospital due to an illness and had overall better health. Well-being was measured as emotional - self-respect, etc. These people spent on average $1185 a year on healthcare as opposed to those who did not have these improvements, who spent $5172 per year on average - two and a half times the annual expenditure on healthcare.
  • Don Berwick: Despite what our senses would tell us, the best health is in places spending less money on health care.
  • DB: Often we believe that more is better - with healthcare that is often false. We focus on more technology which is so costly and does not help as many as focusing on other areas might. We falsely believe that the way to get healthy and stay healthy is through the health care system. Environment and our own actions are 400% more of an influence on our own health than the health care system. We almost always separate mental health from physical health also and we just cannot do that - our minds are so integral to how our bodies do that these two are just too intertwined to really separate.
  • Ilona Kickbusch: People create their own health and the health of others in their community through support.
  • IK: We at the WHO are seeing an epidemic of non-communicable diseases (i.e., chronic illnesses).
  • IK: In order to move forward and improve we have to focus on the past and engage in reverse innovation - looking to countries and communities with more communal views on health.
  • The highest obesity rates are in the United States for those in poverty. However, the WHO is seeing obesity rapidly rising in developing countries due to the lower costs, longer period of food preservation, etc, of junk foods.
  • Richard Layard: The British government's new focus officially is the well-being of people in the nation. Most departments have a well-being section focused on the employees and how to help those concerned with that field.
  • RL: Income only explains 20% of the variation on who is happy and who is miserable according to studies. Instead the most important factors include family and community relationships, and mental and physical health.
  • RL: Most chronically ill people develop mental issues caused by their illnesses.
  • RL: According the the workplace wellness alliance, an organization that works with several big and successful companies, up to 40% of disability cases and absences from work are more mental than physical.
  • RL: Only one-third of those with mental illnesses are really getting treatment, and some of that is sub-par.
  • DL: When asked why he thinks so many people assume mental illness isn't something to be focused on, he said that he believes a lot of it has to do with the societal religious beliefs. The Judeo-Christian tradition focuses on faith not on discussion or action. If you have a problem, you pray and you ask for help and guidance versus making a strong decision based on what you think and what you talk about. In Eastern religions there is a huge focus on you as a person from your overall well-being to actions, etc, instead of just on faith. It is more secular, focused on tolerance and respect for others and yet containing humanistic morals as well. Here in the US secular is almost a dirty word for people see it as removing their morals. Since every person sees his or her religion differently, the best way to combat this would be to focus on really cultivating ethical and moral humanism instead of relying specifically on religion for guidance. If for you religion guides your personal life, that is fine and no one is saying that is wrong but we all need a common ground to stand on not founded on religion because of how it can cause competition, hypocrisy, and hate for some.
For me, attending these two days and having time to think on each presentation was a life changing experience. I began, for example, to be annoyed with children crying during the first presentation. It was already so hard to hear His Holiness due to the noise issues with the venue's speakers. And suddenly what he was saying about being compassionate got through to me. Instead of being annoyed with these children, I was empathetic towards them - they were bored, tired, warm, hungry, and just wanted to play. Another example is at work there was someone audibly crying last week and having a tough day in the row of cubes ahead of me. I was on a call and couldn't go check on this person, but I wanted to so badly. I practiced a compassion meditation, breathing in the negative feelings he or she was dealing with and breathing out good thoughts. I don't know who this person was or why they were having a bad day or if what I did made any difference. But it made me feel like I could do something to help and it calmed the nerves I had for that person. Even dealing with situations I will never be able to change, these two days have helped. Instead of wanting to physically assault idiots I know for their actions, I'm trying to combat their negativity with compassion and voicing how tough it is for me to feel like I am not heard trying to draw compassion from them. It is really hard for me to tone down my anger (being Italian and Irish is dangerous!) but these two days did so much for me. I'm focusing more on the good in my life than the bad - I have my days still and yesterday was definitely one of them, but this is bringing me more and more peace the more I invest into it.

I've always flirted with Buddhism as a religion, with the tenets I wholeheartedly agree with, but could never bring myself to really act on those feelings aside from within myself. At one point, the Dalai Lama asked to see who were Buddhists and I half raised my hand until my future sister in law pushed it up higher. So much  of my lifestyle screams Buddhism and I keep not wanting to label myself. Brynne saw it and the Dalai Lama saw it too, so I guess I'm officially a Buddhist. I can't wait to explore this even more in the next decade than I have in the last.

Thanks for reading!
  • For more on Buddhism, please visit this PBS site, where I found the Eight-fold Path information because I was a little rusty on that
  • Definitely check out Toni Bernhard's website. She suffers from chronic illness and talks about how Buddhism helps her.

Thursday, May 9, 2013

May 10th: Wear Blue & Gather in Memory of Laura

Here's what you should do:

First off, you should wear blue in honor of May being Arthritis Awareness Month. Paint your nails or dye your hair or whatever you want to do with it.

Second, what are you doing at 4pm UK time? That's 11am ET in case you're confused.

On May 10th, a bunch of us who knew Laura of Still's Life are getting together on a page dedicated to continuing Laura's mission of raising awareness that her fiance's mother runs called For the Love of Laura. We're getting together for 10 minutes in memory of Laura being gone five months. If you were touched by Laura in any way, please stop by even if it isn't during that 10 minute time frame.

It seems like every day is both harder and easier to deal with the grief of losing Laura. How does that even work?