Courage

Hello dear reader.

This message literally took my breath away when I saw it. I originally looked at it because I thought it was such a beautiful picture of a lion. Anyway, I had to read what was written there several times before I really grasped it. So go ahead, read it again. Let it truly sink in. I honestly believe that this is the best and most accurate definition of the word Courage I’ve ever seen.

It’s more than a coincidence, in my opinion, that I was discussing this very concept with my therapist just last week. Yes, I go to a therapist. I truly think this world would be a considerably better place to live if everyone did. So I wasn’t saying it nearly as well as this picture does, but I was doing my best to express this sentiment. My example was that so many people are quick to say “I’d die for my (insert children, spouse, best friend, etc. here).” That’s quite a statement of devotion. But the more difficult question, in my opinion, is Would youlive for that person? The way things are right now, dying would be much easier than living is. Every morning when my consciousness returns but before my eyes are open the pain hits me. I reach for the pain meds that are on my nightstand just for this purpose and I take one. I wait about 20 minutes and decide if I should try to get out of bed yet or if I have to take another one. In the meantime my bladder has decided that I need to be in the bathroom NOW! My full bladder begins to yell at my legs, back, neck and head to get over the pain and let’s go. My legs, back, neck and head yell back to my bladder that it needs to quit yelling at them and talk to the blood stream about getting the medications to them. You get the picture. This is the very beginning of my day. It doesn’t get much better from there. It roars during every moment that I’m awake.

Here’s the flip side. I have children and a husband and incredible friends. I love all of them more than words can say. I can’t do much to show them how much I love and appreciate them. Hell, I can’t even keep my house clean. But they are the little voice at the end of the day that drowns out the roaring. I do the only thing I can do to show how powerful my love for them is. I live.

Until next time…

Strength

Hello dear reader.
I hear a lot about what a strong person I am. You have a genetic disorder? You are so strong! You’ve had five surgeries on your head? Well you look wonderful! I don’t know how anyone deals with constant pain. You are so strong! How does that make me strong?
If I have a day or two that I get really emotional and cry at the drop of a hat, is that weakness? If I have to cancel on something I promised to do or say “No” to something I really want to do because the pain won’t let me do it, does that make me weak? What if I turn off my phone and escape into a book because if I have to talk to one more doctor about one more new thing that the Chiari has caused I will scream? Does that mean I’m weak?
Personally, I don’t think any of that has anything to do with strength or weakness. I deal with the pain and all the rest of the crap because I don’t have any choice. If you know of another option, I’d dearly love to hear it! I get emotional and cry because I don’t have a choice. I hide in a book as a survival mechanism, so I can spend some time not crying. I turn off the phone to keep from losing what little bit of sanity I have left. That’s not strength or weakness. It’s survival.
I’m no stronger and no weaker than the next person. If you found yourself in the same situation that I’m in (God forbid!) you would do whatever you had to do to get through a day. You would search for anything positive you could grab hold of. You would try your best to enjoy the good days at least 10x more than you hate the bad ones. Mostly, you would handle it in whatever way works best for you.
One last thing….I believe that if you’re looking for strong people you should look for the people who see the worst of it and love you anyway. They watch someone they love going through hell and can’t fix it. They hold your hand and let you cry and keep trying to find a way to make it better. What makes them so strong? They don’t have to go through it.
I don’t have a choice about what I have to deal with, but my husband does. He still comes home to me every day, checks on me if I’m in bed too long, helplessly watches when I’m in horrible pain, and makes me laugh EVERY day. He’s the strong one, not me. Thank you Tim.
Until next time…

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….

State of mind

Hello dear reader

People say that happiness is a choice. I agree with that only to a point. You can choose whether to focus on the positive things in your life rather than on the negative. That I agree with.

However, there are several reasons why someone can’t be “happy” no matter how hard they try to focus on the positive. Depression can be situational, but is often a chemical problem. When someone is suffering from depression, telling them that happiness is a choice can actually make things worse…much worse.

Depression is a deep dark hole that gets smaller and more confining every day. It robs you of energy and smothers any ray of hope and/or happiness. Guilt weighs on you because you’re depressed, which makes you feelmoredepressed.

Can you imagine feeling that way and then being told that it’s your choice? Or being told to “just cheer up?” Do you think that would help your state of mind? I can promise you that it would have the opposite effect.

So I wrote about depression yesterday. Why am I still going on about it? I don’t really know, it feels important.

Moving on…. tomorrow is my oldest daughter’s birthday. She’s almost to the end of her 20’s. I am constantly amazed at how quickly life goes by. I’m also amazed at how fortunate I feel to be her mother. I loved being “Mommy” when she was little, and I love being “Mom” now that she’s grown. Our relationship is very different now, of course. I’m no longer the person who knows everything, can see through walls AND the back of my head, and always knows when she’s having a bad day. I can no longer solve any problem from a skinned knee to a broken heart with a kiss and/or a cheesecake tart. But I can listen when she needs someone to. I can laugh and/or cry with her. I can give her tips on anything from a roast to a relationship. I can (and do) know that she may or may not follow my advice. She’s a grown woman who can think for herself and make her own decisions. I am so proud of that. I’m thrilled that she asks my advice, whether she takes it or not. In some ways it’s harder to be “Mom” than it was to be “Mommy” because I still want to protect her from the world. I still want to fix anything that hurts. But being “Mom” is wonderful too. I can be her friend now, and she’s a great friend to have. You can’t be a child’s friend and protect them. There are too many times the word “No” has to be said.

I know. I’m ranting again. But these are the things that keep depression from winning. These are the positive things that I try to focus on. I have a great life….a truly amazing husband, great friends, and some great kids (even the ones that aren’t really mine). I live in the most beautiful place there is. I have much to be thankful for. Sometimes I just have to look harder to see past the hard stuff. Sometimes the hard stuff is just too big to see past.

Until next time….

Stigma

Hello dear reader

Note:  There were some issues with publishing this post. I apologize for any confusion this may have caused.

I try very hard to keep a positive outlook on my life, and most of the time I’m fairly successful. But I have to admit that I’ve been in a really bad place recently.  It’s hard to explain, but I just gave up. I didn’t follow up on getting my teeth fixed, or doing the mammogram or colonoscopy my doctor ordered a month ago. I stopped wearing any jewelry or make-up. I didn’t care what I wore, just pulled on clothes because it’s what I had to do. I didn’t keep up with housework or laundry, just did what absolutely had to be done. Nothing mattered. I didn’t want to do anything but sleep. I felt done.

The thing is that I didn’t realize what was going on, or didn’t care. I’m not certain which. Maybe both.  But I woke up this morning and felt different. I got up, took a bath, thought about what I was going to wear and got dressed, and started cleaning the house.  Yes, I know. It was classic depression.  But what I don’t know is where it came from and where it went. 

I’ve dealt with depression for the majority of my life and have been on some kind of antidepressant or another for years. I know the signs and symptoms. I know things that help and things that make it worse.  But I cannot see it when I’m in it.
About three weeks ago I woke up at 3:30 in the morning with a high fever and having convulsions.  My husband rushed me to the hospital, where they diagnosed me with pneumonia. They gave me a prescriptions for antibiotics and home oxygen and told me to follow up with my primary care doctor, which I did. I spent the next week and a half in a LOT of pain and completely exhausted. The one good thing that came out of it was that I quit smoking. I’ve tried so many times and ways. All of a sudden I simply had no more urge to smoke!  Almost worth the pneumonia… maybe.  The point to this long story (yes, there is a point) is that there’s a possibility all of that happening had something to do with the depression coming on.  I say possibility because I believe the depression started before the pneumonia and all that went with it.

So I still don’t know where (why?) it came from or where (why?) it went. I only know that I’m very glad it’s gone and that I have a TON of catching up to do.

I think the reason it’s important to me to put all of this out there is that there is still a stigma about mental illness, which depression is a form of.  But I don’t choose to be mentally ill any more than I choose to have Chiari Malformation or chose to have pneumonia.  There should be no more stigma attached to mental illness than there is to physical illness. 

There needs to be conversation about these things. Only by talking about them can people understand what mental illness is and is not.  Communication is what will bring us out of the dark ages and the fear that goes along with ignorance.

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…..

I’m Back!

Scared

Hello dear reader.

I promised you complete honesty at the beginning of this journey.  You know I try very hard to be positive, to be thankful for everything in my life.  You also know that my health is not great.  Today is not a good day.  As a matter of fact, the last several weeks have been quite rough.  I haven’t written in a few days because I was hoping I would feel better, both physically and mentally, before I wrote again.  Sometimes it’s hard to see the difference between complete honesty and a pity-party.  This is not the latter.  This is me being honest about myself.   That said, I’m going to tell you what happened today that scared the crap out of me.

Let me begin at the beginning…I’ve had problems with kidney stones for a long time.  My kidneys, as well as the tubes between the kidneys and the bladder, are full of them.  This, along with my lousy immune system makes me more succeptible to kidney infections.  I’ve had the flank pain for almost a month this time, but didn’t go to the doctor until my temperature shot up to 102 a little over a week ago.  When I got to the doctor the fever wasn’t there but she gave me antibiotics anyway.  Of course I got the whole “if you aren’t better in a few days or if it gets worse…” deal.  I took my antibiotics religiously and didn’t miss a dose.  After a week of them, the pain isn’t just in my right flank anymore.  It now goes around and inside my hip bone.  It feels kind of like a vice on my right midside.  My temperature has stayed around 99-100.  So I called the doctor’s office and made an appointment for today.  Okay, there’s the background.

When it got close to time for me to leave I gathered the things that I needed to bring.  I also realized that I had forgotten to take the chicken for tonight out of the freezer, so I did that too.  In order to be sure it would be thawed out in time, I put it into the sink with water.  I left my house with time to spare so I wouldn’t have to stress about being late.  So here I was, driving up the pass with no worries listening to the radio. Just as I got to the summit of the pass I suddenly realized I hadn’t turned off the water in the sink.  I racked my brains.  Surely I didn’t leave it on!  But I couldn’t remember turning it off no matter how hard I tried.  I tried to think who I could call to go turn it off for me.  There are several people I know would do it, but who would Duke let into the house?  I didn’t trust him with anyone, especially without Tim or I there.  So I turned around and headed back to the house to turn off the water.  Traffic was totally stressing me out!  Every minute that passed I could envision the water getting deeper and deeper in the kitchen.  Would it spread onto the hardwood floors?  What kind of damage would that do?  Finally, after what seemed like forever, I got to the house.  I stopped on the side of the road and jumped out of the truck without even turning it off, much less locking it.  I ran as fast as I could to the front door and fought with the lock, got in and ran to the kitchen to see how bad it was….

There was no water running.  Everything was fine.   Of course by then there was no way for me to make it to the doctor in time.  I called and told them I would be a few minutes late, but they said if I was late I wouldn’t be seen.  So I rescheduled for tomorrow.  No big deal, right?  Happy ending, right?  No.  Not even close.

My short-term memory hasn’t worked very well since they removed the back part of my brain (see my post on Chiari Malformation).  I’ve learned to work around it some.  I write things down and set reminders on my phone for appointments and phone calls that need to be made, things like that.  But this split from reality, whatever you want to call it, how do I work around that?  It’s one more thing that scares me to death.  I’m terrified that my conscious brain’s functioning is getting worse.  I’m too young to be senile, aren’t I?

I was 100% certain I left that water running.  How could I be that certain and be wrong?  I don’t know.  Maybe I’m over-reacting, maybe I have reason to be afraid.  Either way, that’s where I am.  That’s how I feel.  Tomorrow will be better.  I’m 100% certain.

Until next time…

6 reasons not to worry

Hello dear reader.

Lately, I’ve been finding a lot of inspiration in what certain quotes bring to mind.  Glancing at them doesn’t get it.  You have to stop and let your mind wrap itself around what they say and, more importantly, what they mean.  How do they relate to your own life?  Here’s the one I picked for today…..

“Little minds have little worries, big minds have no time for worries.”
By Ralph Waldo Emerson

Worry…who doesn’t do that?  I think we all do it, some more than others.  I’ve figured out over the years that worry is something that should be avoided if possible.  Here are reasons why…

1.  Worry fixes nothing.   No matter how much you worry about any given thing, it will not change the outcome.  For example, say you’re a student with an important exam coming up in a subject you struggle with and you’re worried about it.  Will that improve your grade?  Of course not!  The way to make a better grade is to study.

2.  Worry actually makes things worse.  Worry is often a self-fulfilling prophecy.   Let’s go back to that exam you’re worried about.  Worrying about it causes stress, right?  Stress interferes with your ability to think clearly.  It also impedes your ability to relax, which can cause you to lose sleep.  Loss of sleep also interferes with you ability to think clearly.  You see where this is going?

3.  Worry can blow things out of proportion.  Monsters hide in the dark.  When you worry about things they grow in your mind.  Continuing with our example about the exam, worry can blow it up from a single exam to your entire future.  Who hasn’t done this before?  “If I blow this exam, I’ll fail that class.  If I fail that class, my GPA will drop.  If my GPA drops, I could lose my scholarship.  If I lose my scholarship, I won’t be able to graduate.  If I don’t graduate, I’ll end up flipping burgers for the rest of my life.  If I end up flipping burgers for a living, nobody will ever want to marry me.  If nobody wants to marry me, I’ll be old and alone.”   Etc., Etc.   Your head has convinced you that you will lose any chance at a happy life if you don’t do well on this one exam.  How many times has the unknown been much worse than the reality?

4.  Worry is habit forming.  Have you ever met someone who worries constantly about everything?   They can’t stop.  Once your head starts feeding into worry, it becomes a vicious circle.  One worry leads to another, which leads to another, which eventually leads to worrying about how much you worry.  Okay, that may be a little extreme, but you get my point.

5.  Worrying wastes your time and energy.  Worrying is exhausting!  Back to our exam, your brain is too busy running scenarios of what might happen if you do poorly (see #3) to have time or energy to absorb the information you need to do well on the exam.  There are only so many things you can focus on at once.   So you decide to go to a study group, where you spend the entire time talking about how worried about the exam you are.  So you’ve wasted three hours and exhausted yourself for absolutely no gain.  And the point is…???

6.  Worry robs you of happiness.  This is probably the most important reason of all to avoid worrying.  You cannot be worried and happy at the same time.  It’s just plain not possible.  It’s a proven fact that happy people are more productive people.  Back to our exam one last time…it’s simply a choice.  You can choose to study hard and do the best you can.  That mindset allows happiness.  You can also choose to have thoughts that say it’s not not good enough.  You need to find something more.  That mindset will lead to worry and frustration…the opposite of happiness

I can hear you now, “But Lynnette, sometimes you can’t help but worry.  Haven’t you ever been in a situation like that?  Are you trying to tell me that you just don’t worry at all?”  Of course I worry!  My kids will vouch for that fact.  However, I don’t allow myself to stay worried, and that changes everything.  When I begin to worry about something, I ask myself three questions…
      1.  Why am I worried about this?
      2.  Is there anything that I can do to make the situation better?
      3.  If I’ve done everything I can, why am I still holding on to this?
Those questions bring me back into focus, into reality.  I’ve done all I can, so let it go.

I’ve learned over the years that while things may not work out the way I want them to, they do work out the way they’re supposed to.  Some people call that faith.  I honestly don’t know if it’s faith or simply experience.  Whatever you want to call it, it leaves no room for worry.

So what do you think?  Do you have little worries?  Big worries?  Or a big mind?

Until next time…

Hot Coals

Hello dear reader.

My last couple of posts have been a bit different from what I usually write about, but they’ve been things I’m very passionate about…domestic violence and giving children a voice when they need one.  Today, however, will be a little calmer.  I promise.

I found a quote the other day that really stuck with me.

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else. You are the one who gets burned”
Buddha

I’ve believed for a long time now that holding on to anger and refusing to forgive, gives the person who wronged you power over you. It hurts you, not them. Buddha just says it better. No matter how it’s said, it’s a truth that a lot of people never grasp.

When I was a child, I wanted more than anything to be grown so my abusive mother and step-father would no longer have control over me. When I was 15, I simply could not deal with it any longer. I was literally losing my mind. So I left. The police found me after a week or so. They gave me a choice between going to Juvie or going home. I thought about it and decided, better the devil you know……right? So I went back. Nothing got better. Things actually got worse. So when I left again a few months later, I had a plan. The plan worked. Instead of sending the police after me, they told me that they would call the police on me if I showed up there. I was free! At least, I thought I was.

Many years went by while I hung on to hurt, anger, hatred, and guilt. Why guilt? Because I had left my four siblings in that hell hole. When I left, I planned to get them out as soon as I could. But I was living in an abandoned car out in a field. In Louisiana. In the summer. I knew I couldn’t take custody of them while I was living like that. It was four years later by the time I had a home of my own, not staying at someone else’s house, and a steady job. By then…..anyway, that’s where the guilt came from.

I went from bad relationship to bad relationship to worse relationship. I was angry, depressed, and felt like a victim. But I didn’t have a clue how to change things. I had gotten away. But I wasn’t FREE. My life still felt the same. I changed geography and who was abusing me, but other than that it was the same life. I’d reach a point where I simply could not deal with it any longer and I’d run, over and over again.

The first time I tried to commit suicide I was 10 years old. I knew that it was dangerous to take more Tylenol than it said to on the bottle, so I swallowed an entire bottle of Tylenol before I went to bed. I completely expected to die during the night. Boy was I mad when I woke up in the morning! That was the first of many attempts throughout my life. I simply could not deal with my life any longer and I tried to run.

It’s a funny thing about running. No matter how fast or how far you run, you are still there with all the pain and anger you try to escape. It took me more than 40 years to figure that out. But I still didn’t know how to change it. I couldn’t erase all that had happened to me. I had tried to forget, but that never worked. I had to let go of it. I didn’t know how to do that.

When I had my first surgery for the Chiari, I truly didn’t know if I would survive the surgery. I wasn’t scared of dying, but if I was going to, I needed to do it with a clean slate. I had to forgive so that I could be forgiven. It wasn’t about letting them off the hook, or in any way condoning what had been done. It was about me being able to die with a clear conscience. So I started calling people…my mother, my ex-husband….people who had hurt me the worst. I called and told them that I was sorry. I was sorry that I hadn’t been a better daughter. I was sorry that I hadn’t been a better wife. I was sorry that I hadn’t been a better person, a better sibling, friend, mother….so many things.

I was shocked at what happened. My pain and anger toward people went away as I apologized for my failures in the relationship. I was able to let go of my hurt. With every person I talked to, a little bit of light shined into places in my heart that had never been anything but dark. It was incredible! They didn’t have any more power over me. What they had done to me no longer controlled my life.

Let me be very clear about one thing here. Forgiving does not mean forgetting. I would never leave my daughters alone with my parents because I knew what could happen. I let go of the pain they had caused me. I didn’t become stupid. What I did was for me, not for them.

I did survive the surgery….obviously. But I had my clean conscious. My past no longer ruled my future. I’ve worked hard every day since then to try to be more forgiving. The things that happened to me are still a part of my life, but now I try to use them for good. I work with children who have been abused or neglected. I work with victims of domestic violence. I am very passionate about those things. But I am no longer a victim. I am a survivor.

That hot coal did a lot of damage to me while I tried to throw it. I still burn my fingertips from time to time when I reach to pick it back up. But now I’ve learned to drop it.

I truly hope that I (and Buddha) have given you something to think about today. Put something in comments at the bottom of this page and let me know. You are welcome to share as much or as little as you’d like. Please feel free to pass this on. It’s truly life changing.

Until next time…