This should be fun!

Hello dear reader

I’ve talked a lot about things that Chiari has taken away from me. Today I found something new that I can do whether Chiari likes it or not! I should probably slow down and make some sense here. I’m just really excited.

OK, let me back up here.  I love to write. My life’s goal is to be published before I die. The best thing anyone who wants to write can do is read…anything and everything. This is great for me because I’ve loved to read for as long as I can remember.

More recently, I’ve been reading some different authors. I’ve come across some books that have been total disappointments.  But I’ve also stumbled on some incredible books!  And when that happens…it’s hard to explain. It’s like finding treasure.  It’s surprising and amazing and you don’t want it to end.

Some wonderful surprises include Christopher Moore (A Dirty Job), Helene Wecker (The Golem and the Jinni), John Green & David Leviathan (Will Grayson, Will Grayson), and most recently Carolyn Kepnes (You). I’m sure some of you are (have been) aware of some of them. But I wasn’t and my life has been improved as a result of my discovery of them. By the way, if you don’t know any of these, I’ve just given you your summer reading list.

That’s all good, but still not clearing up what the excitement is about, right? Well, today I made another discovery. I found a site (actually more than one) where they give you books for free. You choose a book to read and then you write an honest review on it. The only requirement is that you have to have a place to put the review. So this isn’t just awesome for me, it’s great for you too. The reviews go right here on this little blog for you to enjoy or debate or whatever you’d like to do.

I started this post by saying that I had found something that Chiari couldn’t take from me. What does any of this have to do with Chiari? Reading is one of my weapons. I can escape the pain, let the story take me to another place. I’ve used books for that all of my life.

I know this isn’t really that big of a deal, but it’s a positive that I can see. It makes me happy. And I’m going to do it!

I have one final thing on this topic. I’d absolutely love to hear about what you’re reading (besides this, of course ;-O). And as always, feel free to tell me how you feel or ask a question.

Until next time….

Focus

Hello dear reader,

Before I begin today I should tell you that some of the things I’m writing today may have been written before.  When I decided to begin this blog again, I cleared out all of my old posts.  There are things in them that some people may not like.  But today I restored all of them.  They’re all truth.  They’re my story and my perception.  If anyone doesn’t like what I’ve written, they don’t have to read it.  The final reason for restoring them is that, in my humble opinion, there is some good writing there. 😉  So if any of this is repetitive I apologize for that.   That being said,  let’s go!

I’ve learned over the years that if I focus on my pain, my pain takes over my life.  So I try my best to focus on positive things.  Thankfully, I have many of them.  One of the most positive things in my life is St. George Episcopal Church.  I know I’ll forget something from the long list of things they do, so here’s a link to their website.

St. George Episcopal Church

I went to St. George over 11 years ago by accident.  Honestly, I went to the “wrong” church.  But I immediately wanted to be a part of the things they did.  All my life I had heard it preached…feed the hungry, clothe the naked, visit the sick, etc.  Usually what followed that was “we need your money to do these things.”  At St. George I never once heard that preached.  I never heard demands for money.  I saw these things being DONE.  It wasn’t a spaghetti dinner once a month for the homeless.  It was a daily way of life for these people.  I actually heard that my time and energy was more important than my money!  So I jumped in with both feet.  This, just like the mountains, was where I belonged, what I had been looking for.

I began volunteering where I could, helping with the meals, putting together a cookbook to help fund our new (desperately needed) roof, crocheting things to be sold (also for the roof).  The more I got involved, the more I loved it.  I ended up on vestry (sort of the decision makers for the church) and loved that too.  Eventually I had my own day at the meals.  I cooked every Tuesday, I believe it was.

It was during this time that I was diagnosed with Chiari.  I spent three months staying with my wonderful brother (I love you Donnie) in Ohio and had the first of what would be many surgeries.  The Cleveland Clinic was wonderful.  I got a good 9 months of recovery from it.  Unfortunately, all of my symptoms returned and the pain was unbelievable.  I was told that my brain was coming out of the base of my skull.  During that period a good day was one in which I made it out of the bed and on to the couch.  People from the church would come to my house and give me communion.  One of St. George’s priest (Ali Lufkin) makes wonderful pottery and made a beautiful little cup for my communion.

Obviously I was unable to give anything to the church, I had nothing in me to give.  My husband and I (who met at St. George) had been together about three months at that point.  He was doing everything he could to keep the bills paid and help me.  I’ll never forget one day specifically.  Tim had hitch hiked over the pass to do snow and ice removal (we had 3 – 4 cars, just none that ran) and then hitch hiked home soaking wet and freezing.  When he walked in the door I told him that we would have to order pizza or something for dinner because I just couldn’t cook.  I felt terrible about it.  He sat down beside me, put his arm around me and said, “I’m so glad you got some rest today.”

If you’re new to my blog, you’ll soon discover that I sometimes get sidetracked when I’m writing.  The point to today’s post was that I cooked at the church yesterday.  I’m paying for it today, as I knew I would.  But it is one of the most positive things in my life.  I have fun and get to spend the day with around 50 wonderful people.  I absolutely love it when I can do it.  It keeps the useless feeling away.  For me, that feeling is worse than the pain.

So I got sidetracked today, but hopefully you learned a little bit more about me and how I survive Chiari.  Maybe, if I’m lucky, I gave someone a little bit of hope that this disease doesn’t have to be the focus of your life.

Until next time…..