One year

One year has brought a lot of changes.  Since that day when I first heard Corticobasal Degeneration I have thought about life and death almost non-stop. Loss is the word of the day,  every day,  and getting showered and dressed is a major undertaking.  Laughter comes more easily and tears not as often.  Spring arrived in its encouraging way,  summer shone brightly and autumn glows in its wake.  Yes,  life goes on. We lost a dear aunt and welcomed two new people into the family: One son has a wife and another a son.  Dear Grand-girl smiles and plays and laughs,  and offers her little hand in assistance when I struggle to move.  Son and wife cook and clean,  keeping the house running,  and dear husband attends my needs as best he can. The others who live away call or text so I'm in the loop of their lives and friends make sure I get to church or wherever it is I need to go.  I'm learning how to paint and sew,  and I occasionally sing.  It's all very good.

One of my Calgary doctors called to ask how I'm doing.  Very kind. She also told me I showed cognitive changes in tests last spring.  These changes mean I have a hard time organizing or following any thought in a straight line.  So not normal! My memory is going and my sense of smell is already gone.  The cognitive changes with this disease are significant,  she tells me.  Not as bad as Alzheimers,  but significant.  I can tell.  I become agitated easily,  have no tolerance for conflict and just about lose my ability to speak when I'm nervous or upset.  If you are hanging out with me please know it's me not you,  and be patient.  Support,  doc says. Got any? Yes. Some days I feel loved and helped andsecure. Some days I don't. What this looks like down the road frightens me when I think about it.  I chose not to think about. Much.

I'm thinking about paint and how fun it is to render a flower in my unique way.  This sewing machine calls for attention and the sun wants me to walk.  I walked to a neighbor's house yesterday.  It used to be a quick sprint.  Now it's a mountain.  I had to find out if Mr was recovering well from surgery.  He is,  and grateful they got it all.  All the offspring were reported on and thanks given for a long life well lived.  They are turning 80! Truly inspirational to me.  I'll go again. 

When you think of me,  pray that I am comforted in my losses and encouraged daily.  This is important and the essence of doing unto others as you would have them do unto you.  Refuse worry. Look for joy.  Sing.

Thanks full

She was like a mom. When I said I wanted to come she agreed that I should and came a long way to meet  me. Room, board, a listening ear and laughter made this far-away place a home.  For a while home was somewhere else.   She often asked when I was coming home.  I never knew but I came eventually.  The island call was strong and hard to resist.  This last time she said she was tired and ready to go.  Go?  To her heaven-home. Like every other thing she said she would do, she did.  I'm sad but my heart is full, grateful for all she was for me and all she did for me.   I'm better for knowing her. 

How does a person say hello when it's been so long since the last time? When I answer 'I'm fine' it's not quite honest but I don't really want to open a conversation with anything else. Life is hard. Every day there is a new issue. Each time I mis-swallow or stumble with my words I remember how difficult it is to socialize. But I'm okay.  I can't play anything at a jam but I go anyways. Sometimes I sing, and if I can find one I;m going to learn how to play dobro (resophonic guitar, Took a class...think I can do it).Conversation starts slow, improving when I relax. Driving is over but rides are available. I'm hopeful that I'll learn to sew and paint before too long.

This summer I planted a flower garden. This is not gruelling work usually but, oh, it was hard. It's a beautiful addition to our new lawn, designed for entertaining. Our first big party was a huge success and I expect we'll have many more. It's getting easier to take a smaller role for these gatherings but I still forget that I can't do it alone.

One of our sons was married recent;y. I couldn't dance but i moved along to the music as best I could. I shared a funny story from his youth.My fumbly speech made it no less humourous.My instability allowed me freedom to put on comfortable shoes after the ceremony and I even had a quiet nap. There are a few priviledges!

I'm gradually coming to terms with my condition, Next month will be 1 year since diagnosis and there are a lot of changes.  My left hand stays partially closed now, even when forced, so it's useless. My leg barely leaves the ground (try to walk in the dark over unfamiliar ground barely moving one leg. all the time). Neck and back deterioration make getting in and out or up and down so difficult that my dear little grand-girl offers her 'assisting' hand. Somehow her 3yr old entreaties make me  able. Even digestion is an issue but I'm not losing weight so it isn't too bad! So far I can still care for myself but every day it;s a little harder to get dressed and wash.Besides being unable to play violin this is one of the hardest things I face. I accept someone else doing my usual house chores but how will I adjust to being washed, dressed and fed? Maybe that day won't come?

The answer is "I'm OK". I can't control this but I sure don't have to let it control me.

                                                                     

Thanks for sharing a bit of my life.

Changes

Struggles can be called difficult or they can be called challenging.  They demand change,  however you look at it. I'm resisting. Change usually comes easily for me but now it's more of a letting go of good and accepting bad, and I just don't want to. It will be forced on me I'm sure,  because my desire to challenge is breaking. Like the bucking horse I'm wearing out.  I wish I could say I'm fighting. I'm angry - that's a typical response in grief I'm told - but I am losing the will to fight. How can I be resisting but not fighting? I don't want it to be true so I resist admitting my weakness, then my pathetic attempt at some simple chore yells SICK at me and I crumble. I keep trying,  doing a lot less than a good job,  crashing from the effort and trying again. So it goes. I find myself comparing today to yesterday, depressed.  It feels impossible to reinvent my life. Are there disciplines rewarding enough that I would pursue them? Reading,  for instance. Maybe a specific list is in order. Could I become a Bible scholar or a music  historian? Write a book?

I get great ideas and then I get tired.  Holding this tablet makes writing painful. A book? Equally difficult to hold. I can hold a paint brush but not the thing to paint. If I figured that out how would I learn the necessary skills to create something worth looking at? This self talk goes on and on and answers are not coming.  I'm sure anyone listening says"enough whining already" (readers here too) but, well,  I need understanding. 

As my family prepares for our yearly party I lament my inadequacy. It began on our 25th anniversary. It's always been my  'thing' and now watching from the side, coaching (sorta) and complaining that is not quite right, is making me grumpy.

Fatique. All day. Sleep doesn't resolve it.

Everything I do takes extended effort, causes pain and frustrates me. Thoughts these days are happily running towards creative pursuits - learning to paint and sew - and away from woe, but fatigue remains. I'm told my brain doesn't do muscle recovery, at least not like it used to. A recent familiar walk has become a hill climb with one leg dragging at every step. Slicing strawberries for ice cream took an eternity. I finally gave  up.

I've never been a quitter. I could do anything if I wanted to. A person needs that sort of thing in life, don't you think? The attitude of 'yes I can' is important on many levels. I can type, but not well (used to be 80wpm). Stairs yes but only with rails and free hands. Walking is slow and I really should use a cane. There isn't always a wall or a chair or my beloved's hand. I'm stubborn, though, and I keep walking and wearing out. I want to brighten up a cane with cool things  like this:

Well, maybe not quite but something like it. Maybe a selection so I can match my outfit?

Outfits. That's why I want to sew. Jeans and t-shirts have been my wardrobe since a spitty baby created too much laundry, but it's getting harder and harder to keep up. That button is almost impossible. Pulling a shirt over my head is tricky too. So far I have no super idea of how to do clothes. I'm looking for easy fasteners, natural fibers, easy laundering, and of course funky. Flattering would be nice too! 

Life is good mostly. My 'moments' are fewer and my happy is often. I'm letting go of control. Ha. Any control I think I have is a figment of my imagination anyways. I'm happy that I'm not afraid any more.

What to do when I'm done 100 Happy Days? I'd like another word for another hundred days. Anyone?

Monday

Monday has traditionally been a work day for me. These days Monday finds me melancholic. Energy is low and inspiration is lower than that. I try -reading,  thinking,  pondering, praying -but some days,  like today,  I find nothing. I've always been somewhat analytic so of course I'm trying to figure this out.  So much of my life is so different from normal that the new normal  makes no sense. My feelings can't be allowed to dominate but they crowd me into a corner, alone. I'm overwhelmed with cares and circumstances. I'm tired and sore.  I don't know what I need.

Stuck inside illness.

Saturday

Saturday has always been a good day for me. The work is over for a time and focus turns to each other. It occurred to me today that in the current very-different state of affairs that Saturday hasn't changed. We still sleep a little longer and eat a little slower. We go to the market or the thrift store, and almost always look at flowers somewhere. It's pleasant, this meandering. Today at the market the physiotherapist's words echoed in my ears: you need a cane. Huh? Me? I've noticed a few times that I would feel better with a little support. There is no wall at the market after all.  My gimpy hand also reminds me that I need a bag to carry things in comfortably, and I need a wallet that's easy to get to.  The potter who I spoke with saw my difficulty and kindly offered assistance. I'm glad she did but oh,  I wish it wasn't so noticeable.  The tea guy did too. The fellow who makes walking sticks knew exactly what I need and offered custom work to provide it.  Maybe I'll start developing a singular persona of My Style. Color,  crazy hair,  cane,  home made bags,  funky skirts...... I could do that. Then I would be a character,  not sick. I wonder if I could pull it off?

As I listened to the band play at the market I was brought back to my youth. Jazz was everything at the time  and my trumpet was my passport. I loved performing!  A melancholy so huge falls on me it's as if the sun no longer shines. I come home and listen to my current favorites and cry that my fingers will no longer fiddle.  I'm so sad about that I don't know what to do except keep listening and let the music fix me. Then God speaks peace and I'm ok again. Will I ever hear and not feel bad, I wonder?

Gifts are many: wonderful new flowers at bargain prices,  freebies,  warm sun,  sweet chatter from a wee girly full of zest and curiosity,  kind words, good music,  good food....   It's endless. I hope I look rightly.

Happy

Packing, traveling, visiting and settling into another space takes a lot of energy! It's been a terrific whirlwind.  Adding a very bad viral thing on top of resident limitations increases confusion and sports worry of all kinds: how is this going to work? Can I cope? What about my children left behind? Is this just a cold? How do I use that tub without falling? And so it goes....... But it's been good too.

A friend put something on Facebook about a challenge to post a happy photo every day for 100 days.  Designed to encourage positive thought it looked like a good idea.  It's been tough, honestly.  The last two weeks have been particularly trying.  Anyone saying good bye to home, but going home too, would feel the same.  Talk about confusion! Where is home anyways? Yeah.  So focusing on happy is good.

You know what? It's working.  A full day in bed felt nothing good,  but being supported and free to stay in bed sure was.  Saying good bye was very sad but meeting up with people here is awesome.  This little project with a simple daily goal has helped accomplish the'count your blessings' rule that is so valuable to a contented life.  It's a learned skill. Like many other life lessons learning to be content comes on the tail of hardship, but without the trial life would be dull. These latest hard days are part of the same lesson. The trial is a little different but the lesson that I can be content in the midst of it is nothing new. 

Today is my wedding anniversary.  32 years of change hasn't changed our desire to love each other.  We fail, often.  Bad stuff happens.  We move on and keep counting our blessings. We have 6 wonderful children.  We know how to share our passions and our pains.  We forget the right stuff,  and remember the best.  We engage in life and people, and eternal matters more than now. We are blessed. I am happy.

5/100 #100happydays

I'm happy we came here those many years ago.

Designing and building our house
In a quiet,  friendly neighborhood
With an awesome view.

I'm very happy we chose this place to raise our family.

Tired

Fatique beyond belief.  Pain. Overwhelmed.

Some days I can forget a little bit.  Not today.  Today illness is obvious.  Every care is a burden,  every pain a worry.  It's the sort of day I accept a ride to avoid walking 10 minutes even though the sun shines warmly. Visiting may be impossible if it means going out.  There is no song or ambition and emotions surface easily. Fear invades.

Cast your cares on Him,  I know
His caring way He wants to show
Kindness, goodness, love to me
lift the burden: bend the knee

3/100

Today I am happy that my geraniums made it through the winter. What are you happy about?

All okay?

It will be all right? Since when? Being sick isn't all right.  Suffering isn't. Dieing isn't.  What is right here?

I wish I knew.

I used to think I understood some things,  mostly through trial and error. I've had a lot of that. Some of what I know comes from having children.  They showed up my inadequacies really well and propelled me towards love and knowledge. Much was learned from sharing life married to a man as unlike me as black is from white. God used my family to help me understand life and love,  and I'm  grateful. This lesson, though,  isn't learnt yet.

I'm reminded of truth daily but it doesnt really lift the burden to know my life is in His sovereign hands (though it is a comfort). Nor do I feel better knowing that somehow some good will come out of this,  even though I've seen good come out of bad many times.  The knowledge that everyone has some sort of burden doesn't help.  Mine seems. ?... worse. ? Selfish sort aren't I?

The real question,  I suppose,  is how do I adjust the load to make it all right?

I've decided.  I will learn to be content in whatever state I'm in. My study is years old (it's a hard lesson or I'm bad at it. I don't know) and I'm thinking it's close to exam time. I've always passed before. I will again.  

So. It'll be all right.

Join with me as I learn?

100 happy days

The challenge is to take a daily photograph of something that makes me happy. I'll do this for 100 days,  taking me to early August. I'm posting yesterday's and today's photos.

Moving on

Moving on is hard. I am overwhelmed with emotion and the questions swirling in my brain don't quit.  Am I doing the right thing? What about this? Is it selfish?  I go back to what I know: I'm terminally ill,  I must endure the suffering of this disease,  and I wish to be home to do it.

Then I wonder why this place is not home. It used to be. Designing and building this house is one of my greatest joys, not only because of the priviledge but because it spoke love to me.  My husband gave up his favorite things and places to give me a place to grow and nurture my babies. Nothing in our 30+ years has ever been so wonderful. He knew I needed this and the life we built here was good. The trouble is he never really loved it.

It took a while but when I figured that out I gave it up.  Coming back for a few years should have worked but no, it doesn't.  He's not here and neither is my heart. If I wasn't sick maybe I could live without him well enough.  I enjoyed my work,  my friends and my family, but it just doesn't feel right without him.  I want to go home to where he is. There is rest.

I still don't have answers and really,  I don't want them any more.  I am going home. I'm a little afraid but I will be as okay as I can be. I want to be healthy (and maybe I will be) but in the meantime I will look at growing things,  walk a mountain trail while I still can,  listen to birds and babies, and ignore what I dislike. I will do what I do with my husband and I think thats what makes me feel at home.

This has been a strange lifestyle,  going back and forth between prairie and island life. In good days it's an adventure.  Bad days are like today,  not quite knowing which way to go.  I'm trusting that being home will bring peace and joy the rest of the way.

Un birthday

Anyone who has a January birthday is likely aware of the celebration problem. You know the Christmas hangover.  Parties are just too hard. After having a baby born in January I was determined to keep her birthdays alive and happy. Her party would often be near Valentines Day since it was always easy to gather friends by then. My birthday, however, was still hard to celebrate.  In my youth we were often snowed in, flu-ed in or broke-in.  No one was into a party. My solution, and I wish I'd thought of it sooner,  was to move my birthday to April.  My un-birthday was today.  I slept in,  sewed,  visited, had special food  and watched a movie. It was a fun and special day.

In the movie it was said to keep memories with lots of pictures. I'm not very good at that any more. Since I've been sick I don't feel like carrying stuff with me and I'm often too distracted to remember. It's a 'thing'for me. Weird, but it's as if I ruin the moment by photographing it. Even when my friend was dieing I could not take pictures. Thankfully one of my boys insisted so I have one good photo memory of the two of us.  She is smiling and cheerful,  as always,  and I was glad to be there with her. Even though she had every reason to be afraid, angry and depressed she always laughed and shared, and cared about others. She always looked for the bright side of things and never complained. Even her last moments were spent talking and laughing with her sisters.

My life was changed during that year of her dieing. She displayed such courage in the face of death that I was forced to examine myself to see how I could come even close to the hope and cheer that she lived.  Every time I'm tempted to feel sorry for myself I am reminded of her Hello and her cheerful laughter, and I look for it again. It's hard to find sometimes.  Things like this un birthday do it.  Eating candy instead of supper,  nerf wars, listening to old music,  making funny faces at the kids,  and playing silly games do it for me too.  I'm the sort of serious that finds it hard though. I need lots of practice if I'm going to be any good at it.   

I think it's true. It's the pictures you don't take that you regret, and the times you don't laugh.

Sewing

In spite of the difficulties I have been sewing. A lot. There is a modern machine here that requires less fine motor skills from the operator than a traditional one. So far I've pieced a lap quilt,  a baby quilt and two table mats. I even tried my hand at free-motion quilting. That needs more control than I've got but straight line quilting with a dual-feed works. Go figure.

I'll go home with a few projects. I'm very happy. I'm especially happy that my sister encouraged me to try. Fear made me think I'd fail and in some ways I did. I failed to handle big pieces of fabric so I used pre cut strips, squares and scraps. I can't do very small pieces either so sis sewed the binding. She also cut backing and put the quilt sandwich in place. She shared her space and her skills so I could create something that I was afraid I'd never do again. I almost missed out.

Makes me wonder: what else might I have missed for lack of trying?

When I was diagnosed the doctor said to start doing the things I wanted to do, bucket list style.  The only thing left is traveling around North America and Britain. I'd like to see oranges growing and find out if they really do taste better ripe off the tree. I'd like to hear the music of North America played in each state or province, their way, in their home. I'd love a walk on warm white sand, a picnic on an Atlantic beach and a midnight sun party. I'd like to hang out in Britain and see how people do life there.

But you know, if I never do any of it I'm okay with that because mostly I've learned to make the best of my days. The quilting for instance came up when I was very sick with an infection and quite discouraged.  Meds and a tooth extraction helped but getting my mind onto something else is what really worked. Now I have something to show for my efforts along with happy memories of working with my sister.

Make the most of my days..... The sewing machine is not coming with me when I leave so I doubt I'll be doing much of that but I'll try.  Someone will help.  I'm sad when I think of how hard'everything' is - the broken coffee server tells that tale- but to refuse to try is the only true failure. The times of acute illness will become more frequent and my disabilities greater but if I give up won't I be dead in a living body?

Fear of failure isn't going to stop me.

Jazz

Listening is not as much fun as playing. This trumpet was me in my younger days.  Only my teacher supported me. It was her first year. I joined band late so she was obliged at first. After a short while she liked me and I got a lot of extra help. That trumpet was my focus my entire highschool career. My family never got involved or encouraged. It was the same with accordion classes. 5 years and no interest. This girl needs a piano, my teacher said. Get her some real lessons. Not wasting money on that, he said.  Devastation.  Then this teacher came along with the leftover band instruments and saved my life. Jazz band,  concert band, choirs,  city Orchestra. .... What a time it was. Inside my fear and frustration there was music.

How will it get out now? These hands barely move.  My swallow is off.  Who is coming along with a way?

He's Bigger

Lunch at McDonalds'play place is not typically on the schedule. Even when my children were the right age it was too chaotic. Today was an exception.  The kids played and fought as kids do, the sun was shining, and the chaos felt good. When the littlest said it was time to sleep and the others decided that girl was too mean we knew it was time to leave. Wouldn't it be great to always make decisions so easily! In the car the littlest was encouraged to stay awake with chatter from her cousin and the two oldest discussed their troubles.  Maybe it was the mean girl or maybe it was the snow mounds but one was insisting that God is bigger than that.  He's taller and stronger and better than everything.  Just was easily as it started the conversation moved on.  It was a simple conclusion.

The kids reminded me today:  When I am afraid, God is bigger.  When there is a mean girl or too much  of something God is bigger then, too. When I am sick or in pain he is still bigger. It is easy to move on when you know.

I'm not sure what that looks like in my current situation but it may be getting past pain and disability to do things I love.  Fiddling is gone because my hand is so bad but maybe I can devise a new way to play guitar instead. I doubt I can do much needlework but I can sew on the machine even though I need help. The day will come when I can't do any of it,  I know,  but in the meantime I want to turn my mind that way. Remember how easy it is to move on when you  know:  God is bigger.

Puzzle

Puzzling a new pain.  Really bad pain.
Putting the jigsaw together.
Sleep.  A lot.
Japanese grill for 16 including kids.
Finally time with my beloved.
Waiting for spring, in the air and in my heart.

Working it all together is my life these days.  This push/pull is hard.

Something new

Treasure hunting in thrift stores is fun.  Today I just couldn't.  Looking through racks takes two hands and my back was hurting so in the spirit of redeeming the time I looked for a puzzle. It's supposed to be good for my brain and my hands.  Here I am trying to pick up and place the pieces for a mountain vista and all I can think about is the time we took our kids to a place like this. One of them got in a temper and ran off. When we found him I was cross and frustrated with how our day was 'ruined'.   It took a lot of years of practice before I stopped freaking out at every little thing.  It's always been hard for me to keep perspective when stuff goes wrong even though I'm confident things will balance out.

Balance has new meaning now.  Life tips into the painful and confusing daily,  with fatique and sadness close by. Until I got sick I thought I knew how to live well, keeping a happy balance of difficulties and dreams.  Now I know I don't know much at all.  My balance was always in doing.  Now I have to think of other ways and I don't know what they are.  I don't know who I am without my doings. Will I be set aside? What about the hopes and dreams that would keep me going on difficult days? Eternal perspective is more real than ever but I still distract myself with mindless wanderings into'what if' and 'why'.  Like that day in the mountains I'm cross and frustrated instead of looking at the potential for good things.  No balance.

Kids

I have spent a lot of time with children lately.  Kids are great because they force things that a person may not otherwise choose. Noise,for instance. Who chooses noise?  It has populated my life for so long that it belongs there. When I quit teaching I was bereft for a long time.  This week reminded me how hildren play and cry and erupt at the worst of times.  They are full of life and ambition that just can't be quashed.  They insist that their grownups watch,  listen and feel life with them.  They're very real and it encourages me. 

I want to be more child like without the nasty bits like temper fits and chicken pox. Inquiry,  excitement and spontaneity make life happy for me.  Drawing and coloring,  building little plastic brick houses and creating colorful art used to be a part of everyday life.   I want to do it all again with my grandchildren. I know,  I didn't have to stop but so many other things demanded attention that I couldn't help myself.  I'm a little afraid that when I try I won't be able to handle paper or small plastic bricks. Is this where the children start helping me like I helped them so often?  How will that work? Will they be impatient as I sometimes was?

Why write

I want to write so I can talk about what's going on in my life with this dreadful disease.  Is there a particular direction I should go or is the randomness of my self the best way? I don't usually have an angle but do I need one to get audience? Reading about how to writ a good blog just confuses me.

People don't talk about death or dieing.  That's what I want to do.  Just wondering if it will make any difference.

last times

We read the book together, my children and I. it was a long time ago and it stayed with me. I found the title thoughtful. The Very Last First Time. Yeah so what does that mean? Starting again,  over and over,  and then knowing it's the last first time because there is more of the same doing of a thing.  I try to think of my life in terms of first times and fresh starts but lately it's harder and harder to do.  Today for instance I enjoyed the company of extended family.  I tried to think of it as a fun first time but I know it's one of my last times.  How is this group going to happen again? Watching the littles play,  telling childhood stories,  comparing family traits and sharing our history is one of my bests. It's so ...Life. It's one of my first last times.

It feels somehow morbid to talk like this so I don't, but I'd like to verbalize. Won't everyone else get burdened to discomfort? Is talking true truth about expecting to die ok?

I don't get opportunity yet to talk.  I mean,  really,  I'm still trying to live, but I'd like to know about death too. I'm ready to meet my earthly end but the to-do list is still long.  There are numerous last good byes as I visit, call or write those I care about.  There are I Love Yous to be said in word and deed.  There are books to read,  sounds to hear and songs to sing. I have projects to finish and children to send into the world (will they be ready,  these youngest of mine not quite grown? ). How do I do these first last things? I need help with this.

There has to be the first last time for everything. Right?

Today was glorious. I enjoyed the good food,  little children,  family ties, and listening to hopes and dreams. It was a good last time. Oh I know I may be wrong.  It may not in fact be so but if I think of it this way it helps me to live presently instead of futurely. In the moment I'm there without any thought but joy. That made it a glorious day. That's weird since it used to be starting and hoping and planning that excited me.

Hmm.  Random oddness runs through my head at the end of the day and I don't know up from down.  It was just a splendid thought full day.  Very last first times and very first last times.

embarassed

I realized I'm embarassed in public. I shuffle when I walk and kind of sway funny. My face has an almost constant dazed expression, making me look tired and away. I think I've always had an active face. You know what that is:  the sort of face that can be read. Now my face is awkward and unresponsive and it scares me....makes me feel ugly. I'm pretty sure other people avoid talking to me.

Making sense

The ability to understand things is a great gift.  It's also a burden.  When I think I should'get'something and I don't it perks and irritates until I do.  This morning it occurred to me that this idea of knowing is kind of arrogant.  Why do I think I should know everything? How do I qualify? It's impossible yet I still ponder.

That makes me really wonder.

  I lived a healthy life. Why did I get sick? Isn't healthy living the answer to long life?
   God says all things work together for good.  How does my suffering work good?
      Sickness and death is part of the curse of sin.  He uses the curse to bring about his good things?

We all crave perfection but we don't live in the garden anymore.  On earth we will never get there. To get me more into his perfect likeness, he is able, in his sovereignty,  to use every part of my life to do it.  That means,  then, that he uses this disease along with all of my other life experiences. I'm okay with that but I don't get it. How is being sick and dieing useful for my growth? I'm available - no choice there- but I'm afraid.  I just can't rest with the lack of knowing. 

I want to live well, even as I'm dieing sooner rather than later. I want to grow and learn and be useful, just like I always have.   I want days full of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control. What is next after wanting? I'm guessing it's still a matter of 'wait and see what God will do'. Wait training. Ha. 

I'm very glad to know God loves me. How awful this road without him.

This day

There is so much from this day.  Joy and sadness, friends and foe,  silence and sound were all there. Conflicting emotions rode on my shoulders competing for attention no matter how I tried to control them. The joy of listening to superb live music with friends was bittersweet because while I enjoy watching I enjoy performing more.  The awful telling of why I'm not playing just about ruined it all. It was both incredibly sad and wonderfully joyous.

I've always known that two-sided life.  It's mysterious to me how this battle goes always on.  Why can't I just be one way? Don't we all like days of only the good thoughts and feelings,  along with circumstances to match?

The musician sings the story of life and the stories sung today of loneliness, heartbreak and home were keenly felt. The swirl of emotion drawn from these songs wraps me so tightly I want to scream and run.  I'm not sure what that would look like but maybe a song would cover it.  Maybe I need to write it.

How to die

I watched this.  I cried, a lot, because he seemed to know how to go well enjoying each day. I would like to have such a good attitude.

Watch.

Tuesdays With Morrie: http://youtu.be/gGCYD_7taKA

Sad

I gave my violin away today.  It wasn't ok.

If my hand ever starts to work again I know where to find it but in the meantime I look forward to hearing it played.

Unless you are a musician you can't know how hard this is. Can anyone explain the attachment? My music is a part of me, like my voice.  The tools are few now since even simple chords are near impossible on the guitar or mandolin.  I guess that leaves only my voice.  So sad,

I'll sing
But I won't play
      And wonder why
         My body is walking slowly away from me.

I'll only have stories left.  Make them into song? We don't have songs without struggle it seems.  My yoke is easy,  my burden light.  You will find rest He says. Rest in or after struggle?

Hymns

I find myself thinking about songs from my youth. I loved hymns and learned to read music at a young age from studying the hymnal.  It's kind of a funny thing. The hymnal and the King James Bible were the only books I owned for most of my childhood. Those songs and great words were my comfort in turbulent times and they are once again. There are shelves full of books and recorded music but I pull out the hymns and a Bible.

Someone played guitar and sang while I was visiting the other day. It was delightful. I would like that every day.  It brings me into God's presence and calms me. Wish I could play guitar. 

Complaints

On top of everything else I have a sore tooth.  And no way to fix it.  There is also a crying doll in our house for dear daughter to comfort for some sort of school project. Neither of us slept. The kitchen is a mess, the floor shows the mud of spring and bathrooms need attention.  I can't do anything about any of it.

I don't know if I should push myself more or be ok with someone else taking this stuff on.  It's my work but I last about 10 minutes before I crash.  Using my hands hurts.  Standing hurts.  Bending, lifting, reaching all hurts.  And fatigue? Through all my worst moments I've never known this.  Rest brings no energy.  Even eating gives no satisfaction because it's so hard to do.  My hands can either hold a book or turn the page, not both. Tying shoelaces, doing up buttons and closing zippers is getting harder every day.  I know what little kids feel like as they fumble through new tasks.

Yesterday I was more than a little anxious when I had a hard time with the button on my  jeans.  And washing my hair?  It was hard to do when my fingers stopped working. Now it's hard to hold my arms up so it takes forever to do a good job.  My list of abilities is shorter as my disabilities increase.  I can still shuffle-walk but I have handicap parking privileges. I can talk/write but I lose words.  I can hold a drink only if I can reach it close by with my right hand.  You know those big bibs at the care home? Yup, almost.

Today I have a little clarity and humor.  It's going to get worse and going along with it is easier.  Trying to be the old me is just too hard, physically.  Some days, like yesterday, emotionally me is not happening either.   Spiritually I'm in and out of God, angry, sad and trusting at the same time.  Didn't know that was possible? It's me.

Worries and concerns overwhelm me and battle with truth, making the bad things much too big. At the same time I hear my Father say be still and I remember He is sovereign.  He's got it all under control. I don't have to.

This path. ...

Crying

I fell asleep crying - that this burden would be removed, that I could be with my beloved, that provision be made - and I cried when I woke.  My children were off to school and I missed seeing them. Never happened before.  Makes me very sad.  I also woke too late to get to help at the thrift store.  I can't do much anyways but I want to see everyone there.

So many ends and no beginnings.  Very disheartening.

I have no answers

Breakfast

At 2 and I'm grateful

Saturday

I used to look forward to saturdays.  Long, slow breakfast with my beloved, hanging out, family stuff.  Now it's often the day that I ponder my condition.  Sleeping late holds no extra joy when I'm alone.  Breakfast is rarely special, although on those days that one of the kids cooks I'm very pleased.  (G is cooking right now. ..). Doing family stuff is hard with adolescent youth.  They always want to do their own thing, reasonably enough. 

I really want to go home.  Patience.

worry

Today was dinner at a local restaurant.  It's the sort of place where you can count on great service and great food, and knowing many of the other guests.  We talked about a lot of things as we always do and when the conversation came to marriage things became sober. I was reminded that my marriage is awesome and my husband is a prince.  I am very grateful for this wonderful, kind man.  He will take care of me so don't worry, he says.  But I do.

I worry that the task is too big
                              Resources insufficient
Demands overwhelming

What might my family have to live through as I die? Will it make them better or bitter? Will they pull together or apart?

God, help us.  That is all.

Forgot

Tonight I forgot for a little while.  Eating, talking, listening, laughing at the absurdity of life, took me away from the pain and weariness. I've been to some awesome concerts but this was better.  The combination of friendship, warm hospitality and great food made the music sweet desert.   Even being too tired to talk on the way home was nice as I listened to my friends chatting and laughing some more.

I hope I do more of this.

Guilty

Words left unsaid.  Angry in parting. Mistrust, disrespect, mean.

I'm guilty.  People around me are guilty.  Even while I try to be kind and loving it can be twisted to look bad on my character.  I never know how this happens but what's worse I don't know how to change it.

I don't want to spend my time at odds with People.  People hurt me and I lash out, not knowing I'm hurting back until it's to late and then it's a battle of wills.  And blame.  Oh I hate blame.  Owning fault is good.  Casting blame? Never.  And I do it.

Life is too short for this but I can't fix it all and that makes me very sad.

Before I die I want my people to know they are loved and forget the bad times.

Retreat

I spent the weekend with 40+ women.  Our purpose was to retreat from daily life for rest and study. These gatherings always inspire me and scare me too with the uncertain comforts.  When I first started taking time away I was shocked to discover I didn't know me very well.  This weekend was different.  I realized I've spent years around some of these women and barely know them.  How does this happen? I know where they live, what they do and where they worship but I don't know them.  

Our teacher pointed out that People are this way with God, too.  We tend to know all about him and believe in him, but not know him.  If I have a hard time knowing People , and I do, how much more difficult is it to know God? I really want to know people but I'm afraid of what they see and that they won't like me.  I can't believe I just said that - just like being 10 and wondering where I fit, I'm still afraid. I miss out on knowing People because I'm afraid.

I think I'm still afraid of God, too.  Now that I've got this thing happening in my body I get angry with him, too, and I wonder does he really love me, even when I'm angry? What about when I fail to thank him for the numerous little gifts ? Or when I'm so sad I hide out and think he doesn't see me?

These days I'm brought back to the beginning when I get confused like that.  The beginning is knowing he loves me and he always will. He knows me and is ok with who I am. He knows my big picture.  I want to know, and take charge, and i can't.  When I recall his great love for me I don't ' need ' to and that's a great comfort.

That's my big profoundness for the day.  I'm tired and I've only been awake for an hour.  That's what happens when the basal ganglia are diseased.  Stamina, temperature control and motor skills (among other things) fail relentlessly, until nothing works. Right now I'm covered in blankets and still cold. My left hand seizes up when I try to use it and rolling over or out of bed frustrates me, it's so hard.  There is no comparison. I've always been able to do anything I wanted to do. Now everything is a struggle.

Remember this

                                                                               remembrance

This place, this people, this night. My 50th birthday stands out as one of the best. We ate and drank and played all night long. It's also one of the last times. My arm started to hurt about a month later,  and my hand started to rebel soon after. I had to quit performing. If I could play again I think I could cope with everything else.

Deadlines

If I was writing a book or a newspaper article I'd  be working with a deadline.  Applying for a grant and filing taxes require living with deadlines.   Carrying a mortgage for a home comes with a deadline.  Life is full of deadlines.

So when a person is given a diagnosis of terminal illness with a prognosis of about 5 years left, is that not living with a deadline? I'm talking about living. Laugh, talk, sing, draw, paint, play is all life.  That's what I want.  More nerf games, more suppers, more giggling children, weddings, books, worship, movies and such make life what it is.  Living and learning, right? It's a bit harder for me - I'm slow, uncoordinated and tired - but I want all of it.  There are times when having CBD is all I think about.  Wouldn't you think about being so dependent on others that you can't use the toilet alone? Or being unable to hold your grandchild or kiss your spouse? That's what I'm looking at.  In the end I'm told it could be pneumonia that takes my life because I won't be able to cough.  I can't help thinking about these things. As much as I try I can't forget that the doctors believe that's what is coming.  I already can't play fiddle or anything else. Sometimes I can't sing either, because my swallow rhythm isn't quite right.  How do I possibly forget that it's likely to get worse?

In the between times I want to find any little bits of joy that I possibly can.  I want to work to meet that deadline and even push it ahead 20 years if I can. Only God knows my times for sure, though,  and I'm good with that.

Company

I realized today that the days that I have people to talk to are better days.  I also realized that being sick isolates me.  Bit of a trick, that is.  Talk is good but People are scared so they stay away.  How do I encourage them? Must I repeat the no - pity rule over and over till we all have fun? Today the conversation was good books, vacations, relationships, trust and other ordinary things.  The only mention of my illness was when I flinched trying to move in my chair and when attempting to carry the tea tray. Some things are too much. My job at the health food store, for instance.  Tomorrow is my last day.  I love that little store.  The staff and customers are great but I need all the energy I have for my family and my home.
I'll miss them all.

Poor sleep is a big deal.  Hope tonight is a good one.

Sleepless

http://www.kevinathompson.com/dangerous-assumption-gods-will/


I just read this.  My sleeplessness thoughts.

This winter has been tough

This winter has been tough. Finally, a diagnosis, and now, how to live with it? What do you do with a 5 year deadline? I've been thinking about it for a few months and it seems to talk is the thing. Since there are few who would really enjoy hearing all I have to say I'll write instead. You, dear reader, please join me through prayer and conversation. I'd like to say 'let's keep it positive' but how do you do that when you're talking about death? What I really want to know is how to do life knowing I'm facing death. Living while dieing, that sort of thing.

This is the challenge:

My dreams are shattered by the prospect of a too-short life. I thought, like most do, that I'd live to be old, but it's not going to happen apparently. There are questions rolling around my head that I expect I'll never answer. Is it true? Might God heal me? Why would He or not? What good is there in this suffering? Are health and wealth the good that God gives or is it just my narrow vision that calls it good? Or maybe it's what I call bad that is really good?

My big God answers big questions. 

life's setting sun is sinking low

a few more days and I must go

to meet the deeds that I have done

where there will be no setting sun.