Full Disclosure

April42010

In Plain SightBefore the wheelchair and the Prednisone, I could hide my illness in plain sight.  This is me right after a hospitalization.

Before I was in a wheelchair and now a walker, my illness was pretty invisible.  Though there are many downsides to invisible illness, one thing I did appreciate was that it gave me a choice of how much I wanted to share if anything about my illness.  If I wanted, I could mostly hide my symptoms, and no one had to know.  But my wheelchair became a physical sign of my illness and suddenly everyone, everywhere I went, instantly knew something was wrong.  And the big question that lingered in the air was “WHAT?”

I have always been a very open person.  Though like everyone I want to be accepted, I really don’t fear rejection.  Or at least I’d rather be rejected up front by someone I just met than a close friend far down the line.  So my policy about my illness has always been to share as much as the person I’m talking to in curious to know.  And the interesting thing has been that this has brought many blessings in itself.  When I share about my illness honestly and openly, I generally find that people respond with genuine empathy.

Sharing so openly has also given me the opportunity to help many people.  There are so many people out there going through similar experiences to me themselves or have a loved one or friend who is going through something similar.  I find that when I follow my intuition and share I find I’m speaking to someone who can benefit from what I have to say.

People are usually dying to ask me why I’m in a wheelchair or using a walker, but are afraid of being rude.  So I’ll steer the conversation that direction and put them out of their misery.  In this fashion, I often find myself sharing about my various illnesses with people I just met.  Sometimes I share the story of my physical illness and sometimes I share my struggle with mental illness.

Sometimes sharing doesn’t go very well.  Though most people are supportive and understanding, there will always be the ones who are judgmental or want to tell me what to do.  Either way I never regret sharing about my illnesses.

I find it’s important though that when I talk about myself, my illnesses aren’t the only thing I share about.  I am not my illness, and if I can communicate one thing that sticks with the person I am talking to I hope it is that people like me with chronic illness are so much more than the sum of their diagnoses.  I am also a women with hopes and dreams, talents and aspirations, fears and weaknesses.  I am human just like everyone else.  I am a graphic designer and a game designer and a novelist and a blogger and a scrapbooker.

I hope I never lose my desire to share fully and genuinely, and that I never forget to share the most important thing of all – what makes me who I am.

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posted under Awareness, Chronic Illness, Life Issues, Mental Illness | 2 Comments »

Dreaming Big

October142009

When you are faced everyday with a chronic illness, it is easy to find your life suddenly defined by the things you can’t do which is why its why its all the more important to remember to find things you can do.

2947840674_a36744017e_oIt can be little things you still can take pleasure in.  For me it is things scrapbooking, writing this blog, reading a good book.  But sometimes you have to dream big and push yourself.  Sometimes you have to WRITE a good book.

There are a lot of things I really can’t do.  So many things I gave up due to my illnesses.  I no longer can go hiking or play tennis.  I can’t even go out in the sun much due to sun sensitivity.  Before I got sick I dreamed of being a filmmaker and was attending University of Southern California’s film school in pursuit of that dream.  Sadly illness and the financial hardship that often comes with made me a college drop out.  I used to love acting and community theater… another passion I’ve had to let fall by the wayside.

But it hasn’t been all giving things up.  My illness has made me push myself to find new ways to stimulate, entertain, and express myself.  I discovered my passion for scrapbooking and other crafts.  With nothing to do but sit at my computer all day long, I learned I had a knack for the technical .  Now I can build websites and social networks from bed.  I got involved in alternate reality games as a player and later as a game designer.  Through these games I found an online community of the most supportive, caring, and talented people I know who I feel fortunate to call my friends.  Friends that have accepted me illness and all.  I started writing this blog and rediscovered my passion for writing.

nano_flyer_thumb2009Which is why next month I am going to push myself once more.  Next month is National Novel Writing Month, and I have signed myself up for the second year in a row.  And along with the other participants, I am going to try and write an entire novel in a month.

It is scary to announce this here on this blog because now I am in a way accountable to someone other than myself.  But I think that will be a good thing as last year I barely managed to write 1000 words.  Last year, I was fresh out of a 6 week hospitalization, but my novel succumbed to the pain and the fatigue and the brain fog.  I am worried that I won’t be able to concentrate this year.  That the pain will be too distracting.  That I’ll be too tired.  But then I remember all the things I have already given up and all the things I have gained since this illness began and decide that if I give up trying and I give up the DREAM then I have already lost.

If I don’t end up writing a novel in a month, so be it.  Frankly I would be happy to make a big dent in a rough draft.  Even that would be a huge accomplishment for anyone.  But I’m dreaming big, so I’m going for the whole thing.

During the month of November, I invite you to track my word count as I write on my NaNoWriMo page.  I invite you to cheer me on, or even join me!  If writing a whole novel in a month isn’t you’re thing, I hope you’ll think about the things you’ve given up along the way due to your own pain (physical or otherwise) and all the things you’ve gained along you’re own journey, and still remember how to dream big.

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