Being so open with my illness has certainly brought me many blessings.  I’ve had so much vital support especially during difficult times from the people that read this blog.  Sometimes just reading caring comments from people left here have made the world of difference in my ability to get through the day.  My friends and family also have been better able to know what’s going on with me and stay in the loop, so that they can better understand and support me.  I’ve been able to help others by sharing my story and helping people who are going through similar situations not feel so alone.  And I’ve had an outlet for catharsis for myself.

There have also been some downsides.  Sometimes I get unkind and unwelcome comments left here.  Being so open about my illness opens me up to everyone’s opinion on the matter.  I also sometimes have to be careful of what I say because I know that a person I care about in my life will read what I write and I don’t want to hurt them.

But lately I’ve been working really hard to get myself off disability by starting a career in Transmedia.  I went to ARGFest, a conference for Transmedia and Alternate Reality Games, a few weeks ago where I networked and learned a great deal from the panels and speakers.  I had a blast and came back energized to continue pursuing this as a career.  But while I was there I discovered that a lot of people follow my blog, and I started to wonder how that might negatively effect my chances of succeeding in that industry.  Would people not hire me because they had read my blog and knew I was ill?

So that leaves me in sort of a quandary.  This blog is a big part of my life, but I don’t want to give it up, but I also don’t want to sabotage my own career.  So what do you think?  How has being open with your illness been a positive or negative experience for you?  How has it affected your career?  Please leave me a note in the comments!

Here are some photos from my trip to Atlanta, Georgia for ARGFest!

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Post tags: ARGFest, Baptized, blessing, blog, Busy, caregiver, Christianity, Chronic, Chronic Illness, Church, church of jesus christ, church of jesus christ of latter day saints, clear liquids, Conference, energy, feeding tube, games, hope, hospital, illness, jesus christ of latter day saints, Latter Day Saints, LDS, life, living my life, pain, patient, picc line, Religion and Spirituality, walk, walker, WALKING

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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• Kris commented on The Grieving Process of Chronic Illness Thank you for writing this! Today I was looking for support on this topic- I was diagnosed with Myas
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Arise, walk through the land in the length of it and in the breadth of it; for I will give it unto thee.
Genesis 13:17

He answered them, He that made me whole, the same said unto me, Take up thy bed, and walk.
Then asked they him, What man is that which said unto thee, Take up thy bed, and walk?
And he that was healed wist not who it was: for Jesus had conveyed himself away, a multitude being in that place.
John 5:11-13 (King James Version)

Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.

I’ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life. I share every other aspect of my life here. I would be remiss if I left something so close to my heart out.

But my faith wasn’t always so important to me. I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith. So in my more recent adult years I’ve been searching for a faith that helped me feel close to God. For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn’t feel that closeness to God that I so desperately needed.

So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.  I had already learned a lot about being Mormon from her during the time she’s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.

I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.

Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!

So Sunday I was Baptized, and I walked the whole day – including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I had never known.  Words cannot describe how grateful I am.  It has been such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing process!  And I am so thankful to Him for this and for the closeness I now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined.

Recent Comments:

• Meditours commented on Scrapaganza Meditours is committed to providing medical treatments of the highest medical standards today by wor
• 68mu79d commented on Fear
• anna y commented on An Update and a Big THANKS!!! you inspire me. i have no idea how i came across your blog… probably through some of my crazy goog
• Kris commented on The Grieving Process of Chronic Illness Thank you for writing this! Today I was looking for support on this topic- I was diagnosed with Myas
• josie commented on Happy February 14th! I drop in on your site once in awhile and often can relate to what you write – especially to this. B

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