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.

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…..


Wedding emotions

Hello dear reader.

I hope you had a good 4th of July.   It’s so much more than a barbeque or fireworks, or even sales.  It’s a celebration of this country’s beginning.  Things have changed a lot since then….some for the better and a lot for the worse.  I’m not going to get into a political speech, so we’ll just leave it at that.

The wedding is three weeks from tomorrow and I have to admit I’m really starting to feel a lot of things I didn’t expect to feel.  Not about the marriage, I’m totally on board and happy about that.  It’s more about the wedding itself.  I think we as people, and more so as women, have unrealistic expectations about weddings.  That makes it easy for things to disappoint us.  I’ve found myself facing a few of those things lately.  Maybe a better way to put that would be that every now and then things happen in my life that bring up long buried pain, loss and disappointment.  Getting married is apparently one of those things.

Any of you who have read my blog in the past, or who know me at all, know how rocky my relationship with my family is.  My mother isn’t coming because I didn’t invite her.  I actually would have loved to have her there, but I refuse to have my step-father there and I can’t have one without the other.  It’s not a new concept in my life, it’s always been that way.  That’s something I came to terms with ages ago, but it’s something that continues to bring me a sense of pain and loss.  In the last ten years that hole has been filled by an absolutely amazing woman named June.  She can’t come because of her health, though she would dearly love to be there and I would dearly love to have had her escorted in as the mother of the bride.  She’s been more of a mother to me in ten years than the woman who gave birth to me was in nearly 50 years.  Before she had to move (several states away) I had asked her to do my bouquets for the wedding.  What that woman can do with flowers is phenomenal!  

In the last several months I had come to terms with June not being able to come and was seriously thinking about having Brenda take that place.  Brenda died almost two weeks ago. 

My father isn’t coming because he can’t.  He’s locked up in a forensic mental hospital for  the rest of his life, where he’s been for  most of  my life.  I’ve never seen him outside of a locked facility, at least not since I was a toddler.  There was one other man who was special enough to me that I asked him to walk me down the isle and give me away.  He will be out of town the weekend of the wedding.  Since he can’t be in two places at once, I’m walking in by myself. 

None of my siblings are coming, and none of my grandchildren.  Maybe two, but more likely one of my children will be there.  When I look at all of this as a whole, it makes me feel very alone.  Don’t get me wrong.  There will be many friends there who are very important to me.  It’s the people that I share a blood relationship with that will be absent.  In most ways the community of Leadville and especially St. George’s are my family.  They’re the ones who have loved and supported me.  So why should I be upset about my “family” not caring?  I wish I knew the answer to that, but I don’t.  There’s no logic to it.

I got a package in the mail today.  June made the bouquets and boutonnieres with beautiful white paper roses and other artificial flowers.  They’re utterly stunning!  In the box with the flowers was a card signed by my “adopted mother.”  Carrying the flowers she so lovingly put together for me is a way to have her  there, not in body, but without a doubt in spirit.

I don’t remember if I mentioned the conversation Brenda and I had about the wedding two days before she died.  She told me that if she died before the wedding she was going to “haunt it.”  It was said jokingly, but I’m holding her to that.

I can’t say I’m marrying the man of my dreams.  Tim is more than I ever knew I could dream about.  I didn’t know men like him existed.  He’s loving and giving.  He’s smart and funny.  He’s a hard worker and a great provider.  I could go on and on.  These are the things I want to focus on.  These are the things I should focus on.   These are the things I will focus on.  I have a life that I never imagined I would have and I will never take that for granted.

Until next time…