#HAWMC Day 1: Getting Started

Today’s Prompts:

• Why you write – tell us a little bit about why you write about your health online and what got you started.
• Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?

 This year marks my second EVER participation w/#HAWMC. Last year I was very hesitant about participating because a.) I'd never written about my health, and b.) to do so for a whole month felt beyond overwhelming. Yet, not only did I do it, I'm back for more! Last year's participation turned out to be very therapeutic for me. It was challenging to gather the strength and energy to write on a daily basis, however the prompts proved rather helpful (yes, even those to which I felt a bit resistant). I found the prompts to help me remain on point, and I sometimes need that structure, especially on those days in which I have writer's block.

The only reason I ever got started writing (and continued to do so) was because of my #chronicallyawesome superwoman mentor, Jules (check out her blog, or follow her on twitter) This woman is ah-mah-zing! really and truly! love her! Jules not only gave me a space on her blog for my #HAWMC posts, she provided me with endless support and encouragement. Without her mentorship and support, I don't know that I would've made it as far as I did. But I didn't want to let her down, so I blogged away. And she was right to encourage me to do so, because writing proved to be very cathartic. It helped me look at my life in regards to living with Crohn's Disease, Fibromyalgia, and PTSD. And by that I mean, it validated my existence, because I was able to reflect on what it was like for me to overcome so much on a daily basis. Because let's be honest, I am my own worst enemy, and don't give myself enough credit.

Through my participation with last year's #HAWMC, my writings became not only a part of the health blogging project, but served as my online journal and even led to the creation of this blog . I enjoyed my participation w/#HAWMC and was sad when it ended. I was able to keep up my writings on my blog for about a month or two, and then.... I don't know what happened. I got lazy, I slacked. I will not make up any excuses. Life happened. A lot of changes have taken place since last year, and I'm hoping that by participating again this year, I will be able to get out of my writer's block, and also reflect on and process all my experiences from this past year.

Whilst I don 't consider myself to be a newbie, I'm far from a veteran, though when it comes to my health experiences, I am a veteran, complete with battle scars! In the year since I last participated with #HAWMC there have been many changes where my health is concerned. In some ways things have changed considerably, and in some ways, things feel as if they are the same. #HAWMC serves as a great platform to help me self-reflect and process, as well as record, all my experiences. Stay tuned.

**********Spoiler alert: I survived***********

#HAWMC Day 18: Open Book

HAWMC Day 18: Open Book

Open Book. For today’s post, open the nearest book (or find your favorite and open that!) to a random page and point to a word or phrase on that page. Using that phrase or word as your inspiration, free-write for 20 minutes – to be sure, set a timer and see what you’ve come up with.


What book did you choose and why?





“You are always going on about quotes and words and how wonderful they are. And they are, but remember you can play with them. You can put one in front of the other and make them say anything. You can hide behind words, but you can’t hide from feelings. At least, not forever… But actions and behaviors always speak louder than words. ”

(From the book: Girl on the Couch: Life, Love, and Confessions of a Normal Neurotic by Lorna Martin)



I randomly opened to this page and it’s ironic and shocking how fitting this passage is. Nail meet head! I do this. I “hide behind words”, because it’s safe. It’s easy to tell someone I’m fine when I’m not. It’s easy to say that I don’t need help or support. It’s easy to say ” I’ve got this”, to say “I’m strong”, to say, “I will beat this”, to say ” I am strong, I am a survivor.”


But in reality, what I am hiding is that I am afraid. Terrified. Of being vulnerable. Of being hurt. Of being rejected. Of being alone. Of failing. Of not being good enough. Not being strong enough.


It’s so easy to intellectualize feelings. It’s a defense mechanism, which I put up as a shield by which to prevent anyone from getting too close to me. And in that sense, I don’t run the risk of getting hurt. I mistakenly think that I am in control. Yet I’m not. The only thing I’m doing, by keeping people at a distance, is preventing them from helping me.









It reminds me of one of my favorite quotes from the movie Breakfast at Tiffany’s in which the character Paul Varjak tells Holly Golightly:


“You know what’s wrong with you, Miss Whoever-You-Are? You’re chicken, you’ve got no guts. You’re afraid to stick out your chin and say, ‘Okay, life’s a fact, people do fall in love, people do belong to each other, because that’s the only chance anybody’s got for real happiness.” You call yourself a free spirit, a wild thing, and you’re terrified somebody’s going to stick you in a cage. Well, baby, you’re already in that cage. You built it yourself. And it’s not bounded in the west by Tulip, Texas, or in the east by Somaliland. It’s wherever you go. Because no matter where you run, you just end up running into yourself.’ “









I identify with Holly, because I too have put myself inside a cage, and I try to run from myself only to find that it’s not possible.



I use many mechanisms to do this, as stated above and as I am doing now, (Ha!) by writing about it, and by intellectualizing. But words are not substitutes for people. For actual physical contact. For actions. I can say I’m sad or depressed or scared but am I really allowing myself to FEEL my feelings? It’s so scary to open up wounds that hold so much pain. Yet lately I’m learning (through therapy and through my writing) that it is very important to learn how to recognize my feelings and sit with them, no matter how uncomfortable it may make me feel. Because for too long I have “felt” numb (yes, quite the oxymoron). The only way to promote healing is to feel.


Yet all these words I’m typing are useless if not put into action, and by that I mean, by stepping outside of my comfort zone, outside of my “cage”. I need to let down my guard and let people in. That is the true way by which I will really heal and grow. It is called living, which I don’t really think I’m doing much of right now. Sure, I interact with people on twitter, and it’s greatly beneficial to me. But I’m using twitter as a substitute for real- life interactions. I joke that I “ran away” from facebook to join twitter, because it provides me with anonymity. But how is that benefitting me? I have run away from SO many people! I am avoiding lots of friends and family members. I feel so much guilt because these were the same people who provided me with so much love and support during my most difficult times. Those who visited me daily when I was in the hospital. Who never left my side. Who visited me when I was in the I.C.U. I am avoiding them because they saw me when I was at my most vulnerable state. At my lowest, most weakest point. And they accepted and loved me and supported me.


So why is it that I am so afraid of letting them back in? Fear. Of what? That is my biggest issue. I don’t allow myself the opportunity to be authentic. I am living in fear. And it is such a lonely and miserable existence. I realize that part of my avoidance is driven by my PTSD. I am avoiding people, places and things, which remind me of that horribly traumatic time. Yet how can I truly heal, if I don’t overcome this fear? How long can I go avoiding?


What’s your reaction to your free-write?
My reaction is that I am a scaredy - cat who can talk the talk but is NOT walking the walk. All these words are meaningless if not put into action, and yet… I have to let down my guard. I am fully cognizant of that. I acknowledge that behind my words is at heart, a 16 year old girl, who is *still* coming to terms with the fact that she has a life-threatening, incurable illness, but at the same time, this girl is *not* alone. This girl is also no longer a girl but an adult who has so many resources to help her get past her fears. I keep writing about how I want to live and have strength and hope and blah blah psychobable blah blah. I must reach in and give that 16 year old girl who is terrified a huge hug. Then I must open the door to the cage and step out. Then I must find a way to destroy that cage. Otherwise the temptation to go back into it will be too strong. And do I really want to “live” my life inside of a cage for the rest of my life? On the inside looking out? Is *that* really living? No, it’s not. I feel guilt, because I was given a second chance at life, and I am not living as fully as I should be, as I could be. (I SO hate feeling guilt and also the words: should’ve and could’ve). I guess what I’m dealing with, in addition to my PTSD is “survivor’s guilt”. Now that I have identified what is “blocking me” I must find a way to move beyond that block. To find the power within.


What did you uncover that surprised you?
I uncovered that I hide behind words but it didn’t surprise me, as I am aware of how much I am avoiding. It’s ironic that that which I am avoiding is that which can help me heal. I’m bleeding and a simple band-aid won’t suffice. The wound from which the blood is spurting requires immediate treatment. I can no longer run from myself, from my feelings, from my pain. I am vulnerable. I am very afraid. But deep down, there is courage and strength. A will to live, on my terms (whatever those terms may be). I am afraid and I don’t know. This is me. Right now. And I am letting it out, and putting it out there, rather than suppressing it. It is both terrifying and liberating to make this admission. But it is honest.



@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/327-hawmc-day-18-open-book

#HAWMC Day 10: Letter to my 16 year old Self

HAWMC Day 10: Letter to my 16 year old self

Wow. This post has been such a hard one for me to write (I know I say that with each post, but I really mean it with this one). It is without a doubt the most intense, painful and meaningful that I’ve written (and may write) to date. I was diagnosed with Crohn’s disease when I was 16 years old. It was a very difficult time. One which I don’t know how I got through. But I did, and I’ve avoided thinking about it for far too long. And now, I have to go back. And I’m so scared of going back to that place, of re-opening those wounds which have not fully healed. Yet how does that saying go, “what you resist, persists”?


*Takes a deep breath and in the spirit of Hemingway, prepares to “bleed.” *


Dear Kat,


You’ve just been diagnosed with Crohn’s disease, after spending a summer in pain, and dealing with some very difficult symptoms. It began with a stomachache, frequent trips to the bathroom, and unimaginable pain. What should have been an exciting summer has been a scary one for you. Then you ended up spending 10 days in the hospital, undergoing a series of medical exams which were invasive and scary. You have never been so scared in all your life. Yet you have been so brave. You have kept a smile on your face and have kept your fears to yourself, so as not to worry your parents, because you see how much they are suffering.


(Here is where I’d like to tell you, that while it is an admirable trait to put others’ feelings before your own, you have to remember that you and your feelings are also important. It will take you over 10 years before you realize that suppressing your feelings and internalizing them will only lead you down the rabbit hole that is depression.)


I wish I could tell you that all the medications and symptoms you are experiencing as a 16-yr old will go away years later, but they won’t. You will get much more sick before you get better. I won’t tell you to do things any differently than you are doing them now, because though I wish you (or is that we) had done some things differently, you don’t. In some ways you still are very much the 16 year old girl: still trying to find herself, still understanding what her life is like to not only live w/Crohn’s disease but also with depression, still trying to find her place in the world (both as a person and as a professional).


One thing I do wish, my dear 16 yr old Kat (please don’t think I’m being condescending here) is that you worry less about things. You really stress yourself out way too much. Things have a way of working out, you know. Take some time to enjoy yourself and live in the moment.


Despite starting the school year off with a bang (a week after being discharged from the hospital), you do very well both Junior and Senior year. You are a bookworm and love school. Being sick only makes you more determined to do well with your school work and it pays off as you graduate with honors and go on to do well in college.


But my dear Kat, once again, another um, scolding, or word of wisdom. Don’t hide behind your schoolwork. Yes, you like studying but don’t use it as a crutch or substitute for hiding your feelings. *sigh* You will do well in college, and meet some very interesting people (professors and classmates). But becoming what you think is the “perfect student” will come at a great price to you and that price is your health.


You will be hospitalized MANY times for flare ups due to your negligence when it comes to how you care for yourself and your Crohns! I am not reprimanding you so please don’t get defensive or blame yourself. I don’t blame you or hold any grudges. I understand why you do what you do. You see, you are so scared that your fear has manifested as denial. You are very afraid of taking a look at the impact that the diagnosis of Crohn’s disease has on you. On your life. On the quality of your life. Deep down you are petrified. So, rather than confront this fear and talk to someone about it, you put it out of your mind. And the fact that despite being thin you look healthy, does not help. People assume it must not be that bad, as not only do you look fine, but you say you are when really you are not! You mistakenly think that admitting you are in pain, or admitting your fears makes you a weak person. So you become quite a master of hiding your feelings. You even try to hide them from yourself. Yet you can’t, can you? This only makes you conflicted because by denying yourself from dealing with your feelings you are never at peace with yourself.


You are very vulnerable yet hate admitting it. But it does have its benefits as you are drawn to others in whom you see qualities similar to yourself. This is one reason for which you are drawn to the field of psychology. You excell in this field and a significant class for you will be Community Psychology, as that class will lead you to have an internship in an outpatient clinic which serves a population that is chronically mentally illl and homeless. You have never worked with this population, yet from your first day at the internship, you feel such a kinship with these individuals. Here you see human beings who other people would ignore. You see how vulnerable they are. How fragile and broken. You see yourself in them. And in that instant you know that this is a population with whom you want to work upon your graduation from college. And you do!


Once you graduate college you get a job as a residential counselor and you love it. You are doing work you’ve dreamed of as you are helping others and in doing so you are also helping yourself. But once again, because you continue to be in denial, you put your work before your health. Once again you become ill frequently, but continue to work, choosing to ignore the pain. Until the day comes when you can no longer ignore how sick you have become. The Crohn’s monster, who will not be ignored, once more rears it’s ugly head.


So, my dear Kat, just be who you are and don’t be so worried about how life will work out. You will have bumps along the way, and fall many times. But you always pick yourself back up. Don’t do anything differently, even if it makes it harder for you. Accept yourself as you are now and as you will be when you catch up to the person writing this to you.


Before I close this letter, I want to take you in my arms and give you a hug, stroke your hair, and encourage you to feel safe enough to cry. To let down the walls you put up that keep others out. The most important piece of advice I can give you (which you don’t want to hear because you are 16 and think you know EVERYTHING!) is that you don’t have to take on the weight of the world by yourself. It is okay to ask for help. Please don’t try to do this alone. Because you can’t. And it doesn’t make you weak for seeking support. In fact, it makes you stronger. And you are such a strong individual. I am proud of you and I hope you will proud of who you later become. As you get older your realize that you are a fighter, a Crohn’s warrior and you never give up, no matter how difficult things get.


Ps. Enjoy high school (don’t argue with me, just listen). It will be one of the best times of your life. Pss. Ok, only giving you one spoiler, Can’t help it, so listen up: When you have that surgery in 2010, two of your favorite high school English & Lit. teachers not only visit you in the hospital, they bring you books! Yes, you are still very much the bookworm. Ok, that is it, yes, probably *not* the spoiler you want, but *the* best parts, well, you have to wait for them! ;)


Never forget how much I love you!
-Kat




@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/311-hawmc-day-9-letter-to-my-16-year-old-self

#HAWMC Day 8: Best Conversation I Had this Week

#HAWMC Day 8: Best Conversation I had this Week.

Not knowing what to write about for today’s topic ended up giving me anxiety which became a conversation that led to this post. Lmao. isn’t it funny how this works?


Kat: I am frustrated, irritated and annoyed because I don’t know what to write about for today’s topic.

Chronically Awesome Person: What is your topic?

Kat: I’m supposed to write about a conversation I had this week and I have no idea which conversation to write about. Gah! *head desk*

Chronically Awesome Person: Hahah. Relax. Think about a conversation that stands out to you. I’m sure you’ve had many good ones this week.

Kat: *Sigh* Yes, I’ve had lots of great ones. Hmm. Will have to focus on one or maybe sum up a few… what do you think?


Chronically Awesome Person: LOL. Sure. Whatever you think is best.
Kat: Ok. I will try. Thank you.


The following conversation is actually a summary/morphing of a few conversations I had this week, which I’ve changed so as to maintain the anonymity of those with whom I conversed.


Chronically Awesome Person: Kat, great job on your post, it took courage to expose yourself, yet you opened up, which takes strength.


Kat: I don’t feel strong. What does being strong mean? How do I acknowledge my strength?


Chronically Awesome Person: You are showing your strength through your writing.


Kat: Thank you. I don’t feel that what I’m expressing is any different from anyone else. We’ve all experienced difficulties through our diagnosis and what we’ve been through. I don’t consider myself unique.




Kat: I’m blogging for myself. To help me come to terms with my feelings. I don’t think about how what I’m doing is affecting others, much less consider how it will help them.


Chronically Awesome Person: Today’s blog seemed like a departure from previous days. I sense you are reaching the areas you find most difficult to expose yourself to, the uncomfortable reality of living through such a difficult experience


Kat: It is difficult to go back and open up the wounds of the past yet it is also a cathartic experience. I feel that the only way for me to truly heal and move on is to look at the source of pain. I hope that will help me grow.


Chronically Awesome Person: You have more courage than myself, i would find it difficult to open up the entirety of the physical and mental damage endured, I think you are brave and your writing is wonderfully honest. As the blog continues i hope you will fully come to terms with how the illness, the trauma and recovery you have lived through has formed the strength of character that you clearly have


Kat : I feel I’m growing stronger.


Chronically Awesome Person: We are getting stronger everyday even if we aren’t aware of it. But we are.


Disclaimer: While these conversations did happen with real people and not the voices in my head (ha) it just feels so cheesy to me. I mean, I am focusing on the support I’ve received from people who have taken the time to read & give me feedback. Yet I’m concerned that I may come across as self-congratulatory. Which is not how I want to be perceived. I do appreciate the support, as it reinforces my decision to take part in the writer’s challenge. I would be remiss to ignore the impact that others’ feedback has had on me. Whether good or bad, I welcome comments, not only to help me as a writer, but to open up a dialogue about our experiences & how we cope (whether it be w/Crohns/Mental Health/or our Chronically Awesomeness)


For this past year and a half I have pretty much been in “survivor” mode. By that I mean, the “fight or flight” mode. Just focusing on getting through each day, but not really stopping to analyze myself, for fear that I will get lost in my thoughts and in my depression, fall apart, and like Humpty Dumpty, never be put back together again. With the start of attending therapy back in October of last year, along with my participation in this HAWMC project, I am able to slowly move beyond just “being” in survivor mode, to actually living. If that makes any sense at all. What I’m trying to say, is that I’m slowly healing. I am slowly moving out of my depression, connecting with others, and making peace with what I’ve been through. That is not to say that I don’t have my bad days: days in which I have a fear that is so strong, it renders me unable to move, unable to want to do anything but just “be.” I am slowly having an interest again. This is a big step for someone who has depression, because I’ve had so many months where I’ve found it hard to have any motivation or interest in anything. To feel even a tiny spark of hope, is significant. And that spark is ignited by the people with whom I have contact everyday via twitter.


To those people who have had faith in me when I haven’t had faith in myself, I cannot thank you enough for your support. Your kindness and support means more to me than you will ever know. Or hopefully, if you read this, then you will know how touched and inspired I am by you.

Thank you. <3

 

~~~~
@hipsteralice
April Blogger in Residency
Alice in Crohnsland
for

http://www.whatthejules.com/april/305-hawmc-day-8-best-conversation-i-had-this-week

#HAWMC Day 4: I write about my health because ...

#HAWMC Day 4: I Write About My Health Because

There is nothing to writing. All you do is sit down at a typewriter and bleed.”
                      - Ernest Hemingway

When thinking about why I have decided to write about my health my first thought was, because I am selfish and it will help me as a result of putting my thoughts and feelings down. But I wonder if selfish is the right word. Because “Selfish” connotes negativity, yet to do something like writing for oneself is not negative. Especially when doing so with the hope that someone finds something in what I’ve written to which they can relate. Thus, maybe selfless is a better word? Because while I acknowledge that in writing I am primarily helping myself, it is my hope that I am also helping others. That is not to say that I consider myself the voice of authority of the Crohn’s experience. But I am the voice of MY experience with Crohn’s, and how it has impacted MY life.


I write about my health because it helps raise awareness about Crohn’s Disease, from a personal perspective, that goes beyond the “textbook case” of the disease, by humanizing it. Crohn’s disease doesn’t just affect the body, but the whole person, and even beyond the person, the person’s surroundings, loved ones, friends. So far writing has been a cathartic experience for me. The ease with which I have written these pieces has surprised me, as it tells me that I have kept my feelings bottled up for far too long. The fact that these pieces flow out of me so easily reinforces my decision to write about my health. I have something to say that needs to be told. I have been silent for far too long, which has affected my mental health. Repressing my feelings is one of my symptoms of my depression. It is my hope that I can begin the healing process by writing about my health, to help me get closure on what I’ve been through in the past, as well as to help me grow.


I write about my health because it helps me connect with others. This is only my 4th piece of health writing. Ever. I was so nervous about participating in this project. I don’t consider myself a health activist or a health writer. To do so would be too intimidating and would definitely prevent me from writing. I’ve tried to be as open as possible, in the hopes that others can relate to what I’m going through. To help them see that they are not alone, to help ME see that I’M not alone. To not only raise awareness, but HOPE. The responses and support I’ve received thus far have been great. I’ve heard from fellow Crohnies who find something in what I’ve written to which they can relate, which then opens up a discussion. And by talking about what we are going through, we begin the healing process. We see that we are not alone, we help each other cope, we feel hope, we feel encouraged, and the healing process is set in motion.


I chose the above quote by Hemingway because it is one from which I get inspiration when writing about my health: ” There is nothing to writing. All you do is sit down… and bleed.” I have found it easy to ” sit down and bleed” by allowing myself to express my vulnerability through my writing. And in doing so, it has become a very cathartic experience. I am thus far enjoying my participation with the #HAWMC challenge and look forward to seeing how far I go in my growth process as a “health writer” (which, by the way, I don’t consider myself to be a “health writer”, but for the purpose of this exercise, I am using the term, mmmkay? )

@hipsteralice, April Blogger in Residency
Alice in Crohnsland for

http://whatthejules.com/april/293-hawmc-day-4-i-write-about-my-health-because