MSA Awareness Month

March is MSA awareness month.  For those of you that have followed my blog, you know that my mother died of this disease in 2009.  I will say "probably" died of this, because one of the hallmarks of MSA is that it is so hard to diagnose that some people never really get a full diagnosis.  Mayo clinic said she had it, and I figured they were pretty good authorities.  I have been posting pictures of my Mom, not too long before her death on Facebook.  Doing so, has brought back some unpleasant and not so unpleasant memories of those few years.  I didn't take any pictures of my Mom as she struggled through her final months, as some people did of their parents.  I am glad I didn't, actually.  Not to mention, she would have never allowed it anyway!

But the point of all this, aside from wanting to blog about MSA for the awareness month, is that when someone dies of a disease like this, you never really get over it.  Not really.

Memories of what happened day to day and what happened the last days of their lives come back to you at the most odd moments.  Dying isn't always as picture perfect as it is on tv.  It isn't a misty water colored memory, as some lead you to believe.  Its pretty brutal stuff. 

Truth be told, I didn't hang around much while my Mom was dying.  My Dad couldn't stay, he was so upset, so I drove him around, took him to my house, etc.  I sat with her, came in and talked to her, but my husband, my sister and her brothers and sister did most of the sitting.  This isn't something I'm proud of, to tell you the truth.  I wish I could have been one of those people that sat, holding my Mom's hand, telling her it would be ok.  Well, it wasn't ok.  She knew it and so did I.  She struggled at the end, cried out a lot, pulled at her legs and wept.  She didn't want to die.  Was she afraid to die?  No.  But even those most prepared for death aren't ready to leave their loved ones.  I had a hard time because it was like she was trying to tell me something over and over again.  But her ability to talk had gone and she couldn't let me know.  I talked to her finally and told her that she was dying.  Nobody had bothered to tell "her."  They told me, my Dad and anyone else who would listen.  But they didn't tell her.  So I did.  I asked her if she understood.  She nodded yes.  She was calmer after that, much calmer.  It was time to stop fighting. 

But, I still wonder what she wanted to tell me.  Did she want to tell me that she wasn't dying, to help her?  I knew she couldn't swallow.  I knew she couldn't eat or drink.  I knew she wasn't going to live.  I asked her if she wanted to go to the hospital.  She shook her head no.  I asked her if she was afraid to die.  She shook her head no.  My husband said that he thought she wanted to say so much to me as she passed and just couldn't and it made her crazy with sadness. 

I won't know, this side of eternity, what she wanted to say.  So it will haunt me.  Was she upset I didn't stay by her side every minute?  Probably.  I wasn't there when she took her last breath.  She wasn't alone, but I wasn't there.  The one person that should have been.  Something else that will haunt me.

I had a dream Saturday evening.  To preface, I have dreams like this often.  They aren't like dreams where you just "dream" about someone.  They are actual visitations.  I know this doesn't hold with my beliefs, but it happens.  My Mom has visited me often.  But this time, it wasn't her.  It way my Grandma.  Grandma has been dead for 8 years.  I asked her why she was here.  She told me straight up that she was sent to tell me to stop worrying about things.  Leave it to my Mom to get exasperated that I wasn't listening to her, so she sent Grandma.  She was there clear as a bell.  I was walking down the hall of a building and ran into a woman and she turned around and it was Grandma.  

I know I've blogged about this before, but all this MSA stuff reminded me of it.

Not very poetic.  But what is on my mind.

Facebook: The snapshot of your life

I was scrolling down my Facebook newsfeed this week and looking a the "friends" posts there.  I was taken by all the people that had been part of different times of my life.  There were friends I had known since I was a kid, family, work friends, friends from different churches I have attended, work colleagues, the list goes on. 

You have no idea how many people who touch over your life.  Facebook just has a way of putting it into one place.  I thought about some of the friends from my high school days meeting friends I have now and if they would be talking about the same person.  Am I different than I was then?  Assuredly in some ways, yes.  But I wonder if there are similarities they would find interesting, even all these years later. 

I look at all the people there and wonder, do they really know me?  Do they know the REAL me?  Do they want to know the REAL me?

I ponder these things at great length and wonder if people would still like me if they knew the REAL me.  I always feel like I have a mask on, sometimes even with those closest to me.  I put on a mask for whoever I'm with.  Don't get me wrong, I have certain principles and beliefs that don't change no matter who I'm with.  But in some way I am a chameleon. 

So, my goal this year it to try to be the same with everyone.  I think I'm doing better with this, because frankly, its too exhausting the other way! 

The Gaping Hole

It's been quite some time since I posted. To catch up, my health issues have resolved themselves, for the most part. Christmas has come and gone and now I am heading towards the new year. This was the 3rd Christmas without my Mom. Though it was very enjoyable, I started some new traditions and I gave my family a Christmas that they haven't had in years, it was bittersweet. I told my Mom once that when she was gone, I would never enjoy Christmas again. She was aghast at this and said, "then why did I fight all these years?" I felt bad, but to be honest, I will never enjoy it like I once did. It will be much different how I enjoy it, but then again, life changes. Change is inevitable. She admitted that holidays in general were different after she lost her own mother.

It has been in the back of mind all this month. The gaping hole. The deep bass note of abscence. The empty chair, the missing present, the non-existent laugh.

I had a dream a few weeks ago. My mom was in bed with me, my bed, the one I have now. She looked as she did when I was in high school. She was wearing the house coat she wore then. A orange and white monstrosity that I never liked, but she loved. We were chatting about things. I could smell her. The ambiance of her scent. After we stopped our conversation and I felt myself waking up I saw her. That place where you aren't sure you are awake or not, she walked to the side of my bed, translucent (I could see my hallway through her) and she kissed me and I woke up.

The dream stuck with me, obviously. It didn't leave me with the sense of searing pain that dreams in the past had. But as Christmas came around, I felt that gaping emptiness of her abscence again.

I know that it will pass, it always does, but not completely.

It's a feeling I will live with my entire life. But, it is part of me. It has become who I am. It's not perfect, but there it is.

It was the best of times, it was the worst of times....

Just to catch you all up, I haven't been very well lately.  Digestive and female issues have kept me in a state of fatigue, pain and even depression for the better part of a month and a half.  So far tests have come back ok, still more doctors appointments to attend in November. 

But this isn't a detailed blog of my recent health woes.  I began to think about how much of my Mom's life was spent like this.  For the most part, I have been pretty healthy.  This recent issue, I pray, will only be temporary and I can get back to my normal life.  But this WAS normal for my Mother.  When she was having a "good" day, it was usually what most of us would consider a bad day.  For a good part of her life, she woke up in pain, went through her day in pain and went to bed in pain.

So at the end when she was crying out in pain, I knew it had to be pretty bad. 

I know this post is short, but I try, as I have my painful moments, and I have had them lately, that this was nothing compared to what she went through.

Well, *this* bites.

Nice title huh?

I've talked about all sorts of things on this blog and most of it has had to do with what I have been doing since my Mom died.  It has been pretty up beat, most of the time.  But I'm here to tell you, this grief stuff bites.

I've been having a super hard time lately missing my Mom.  I've felt myself sinking into a depression.  I've fought it, but here I am.  I have been finding it difficult to concentrate, work, or do most anything.  I recently had a bout of stomach flu and that tied it.  I'm depressed.  I've been dreaming of her often lately.  Nothing against my Dad, my Husband or friends and other family, but nothing can replace your Mother. 

I did some things last week I thought I would never do.  I was making reservations for my vacation and found a great place to go.  I was so excited, I picked up my cell phone to call my Mom to tell her.  I realized it before I dialed, of course, but the thought ran through my head.  I called my Dad, yeah, he wasn't as excited as Mom would have been.  I finally called my Great Aunt and she had the proper level of excitement. 

It hit me that my Great Aunt is the closest thing I have to my Mom right now.  She has parts of my Mom and my Grandmother rolled into one.  It made me happy for a second.  Then yesterday I found out she had a car accident on Sunday and nobody told me.  Really?  She's ok, mind you, but it made me realize just how close she is to her final hours too.  I have a strong faith, so I know that you can't rest all your life and happiness on people.  God is the only one you can always rely on to be there.  But it still isn't easy.

So here I sit, trying not to be obsessive about some recent health issues I have been having, trying to focus on my day, and realizing that I'm depressed.  I read the symptoms and I have it.  Been here before, I'm sure I'll be here again.

So, if you run across me and I'm not myself, just nod and let me go by.  It's harder this time though, so bear with me.