Walking on the Water

God has never called me to exercise such faith as He has just now. I have never felt so out of control as I do right now. Life has never been more uncertain than it is right now. I'm walking on the water, one step at a time, one foot in front of the other.

I am Peter. The storm rages around me, our tiny boat is taking on water, and I admit it; I am terrified. The lightning flashes and we catch glimpses of a distant vessel and its single occupant. Maybe help is coming? A peal of thunder roars across the water and the sky lights up like the noonday sun. In that moment we see the vessel is closing fast, and the commander, he's...he's standing up tall, still and straight, on the bow of the boat, unafraid. He seems to hover just above the vessel like no human could do. Is this a ghost? The vessel's approach is swift and now he is so close we can hear his voice over the din of the storm. It sounds like Jesus? No. It can't be him. We left him on the shore to rest several hours ago after he finished preaching.

But the voice -- it sounds like his. If it's really him, he can walk above the water. He can do things. He knows things. If it's really him.

Our boat is filling with water and we're bailing as fast as we can, but it's not enough. Terror grips my heart. I look up at him, and the words are out of my mouth before I can stop them, "Lord, if it's you, tell me to come to you on the water."

"Come." Just one word. Come. But it is enough. It is Jesus.

What is there to lose? We are taking on water and we're far from shore; we'll all most certainly drown without him. Yes, Jesus, I'll come.

My hands grasp tight to the sides of the boat, but only for a second. All doubt disappears and with one leap of faith I'm on the water, eyes trained on Jesus. Our eyes lock and all else falls away; His alone is the power. His alone is the glory. In Him alone is my faith. The water is solid, the storm fades, and I'm taking another step toward my Savior.

Lightning cuts through the sky and arches out behind me. His eyes hold mine, willing me not to look away. A clap of thunder nearly drowns the screams of my companions and I hear the unmistakable cracking sound of our mast as it splinters and catches fire. His eyes hold me, implore me, steady me. But I must know.

And so I look away. I look behind me at the triumph of the storm's fury. The fire, the lightning, the thunder...and the water.

"Help me, Lord! I'm going under." I should be afraid, but I am calm. Cold black water swallows me, pulls me down. Seaweed tangles around me and I close my eyes and wait. It's quiet.

A beat, maybe two, and suddenly my senses are alive and my body tingles with power as a hand reaches deep to touch my own. His hand. It raises me up, up, up, and I feel hope coursing through my heart. I emerge from the water to find myself face to face with Jesus. He's in our boat, both hands now raised to the sky, locked in a fierce battle with the storm. Finally, He lowers His hands and his head. The wind dies away with the motion and the sky sucks the rain back into itself. The lightning is extinguished like a campfire, and the stars appear.

He looks at me again and all I ever needed is in his eyes. There is no condemnation. He is God. My God. My Savior. The One who commands the universe. The One who knows my next step. The One who pulls me up when my feet fail.

My storm isn't lightning and waves, but I am Peter. All is stripped away until all that is left is to look at God. All I can do is trust. So I plunge out of the boat, onto the water.

Catch me, God. Hold me up above the waves. Extinguish the storm. Calm my fears. Hold my hand. Dry my feet. Comfort my soul.

Here I am.

Where Feet May Fail...Below is the link to one of my favorite songs about being called out onto the water. Listen.

https://www.youtube.com/watch?v=FBJJJkiRukY

Matthew 14

Jesus Walks on the Water

22 Immediately Jesus made the disciples get into the boat and go on ahead of him to the other side, while he dismissed the crowd. 23 After he had dismissed them, he went up on a mountainside by himself to pray.Later that night, he was there alone, 24 and the boat was already a considerable distance from land, buffeted by the waves because the wind was against it.

25 Shortly before dawn Jesus went out to them, walking on the lake.26 When the disciples saw him walking on the lake, they were terrified. “It’s a ghost,” they said, and cried out in fear.

27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”

28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”

29 “Come,” he said.

Then Peter got down out of the boat, walked on the water and came toward Jesus. 30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”

31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”

32 And when they climbed into the boat, the wind died down. 33 Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.”

Time to Re-Set

I wrote this maybe a month ago, but decided to post it now anyway, in hopes that it will be helpful to someone. On the particular day I wrote this, I was having a difficult time with my Parkinsons symptoms and I was discouraged. If you're  having a melt-down, or crying, or afraid, know that you aren't alone. Here's my post:

I have no good excuse, but I had a complete and total breakdown last night, sobbing my heart out.

I'm having a much more difficult time walking, regardless of diet and supplements. I guess I somehow thought I could completely arrest my symptoms, and when they actually got worse instead of better, I was mad. And afraid. Maybe more like terrified.

And I was mad at all those songs on Christian radio that talk about God working things for our good, and trusting that all things will work out right. I don't think this looks "right."

I'm sorry if it sounds sacrilegious, but I'm really being honest. I can't be the only one who feels that way....but I might be the only one who admits it.

I'm left to wonder if I should increase my medication or if I should hold out to see if I can make a a difference with essential oils.

I'm tired...emotionally, physically, mentally. Hopefully, I can come back on another day with a better attitude!

I Want...

I want...something, but I don't know what it is. I feel unsettled.  I'm vaguely unhappy and I don't know why. I'm feeling empty, tired, and in need of something different.

Sound familiar? It's certainly an old and comfortable chorus in the song of my life. I revert to this stanza regularly, and I never seem to find answers to stop the coda of repeats. It seems that I always end up back on this verse, rehearsing the restlessness, singing the blues, holding out for the next thrill, drumming my fingers, wishing for who-knows-what.

And then, out of the blue, today it hit me. I'm not missing anything. I'm not empty. I'm not unfulfilled. I'm just falling for one of the oldest tricks in Satan's handbook.

Discontentment.

Discontentment makes you want something more. Makes you believe that something is missing. Obscures the blessings that come your way. Deceives you into thinking the next thrill will satisfy you. Causes you to lust after the world. Keeps you off balance. Makes you ineffective in your day-to-day life. Derails your focus.

Discontentment is believing a lie that keeps you perpetually waiting for something to fill you. Your self-focus on fulfillment stops you from ministering to others. As a matter of fact, it stops you from any outward-focused activity at all.

What if we stopped entertaining restlessness, stopped looking for something to consume. What if instead, we counted our blessings, reflected God's love? Would the restlessness go away?

I'm sorry for the restlessness I have entertained and nurtured. I am already full, already blessed, already fulfilled. I just forgot for a moment.

"Count your blessings, name them one by one; count your blessings, see what God has done..."

This is My Job, My Battle...I'm Waging War

I used to have a vocation that demanded I show up every day and give 100% while I was there. I still have a job like that, but now I've added a new full-time job:  studying my disease.

It's ironic. Those of us who have the least amount of energy in reserve are also the ones called upon to expend the most energy working two full-time jobs.

I guess I have two choices:

1) Work just one full-time job and let Parkinson's Disease happen to me like a hurricane relentlessly pounding on my door in increasing severity every day. Let other people control my health plan. Accept PD as my new lifestyle and let it in my door as if it were that one family member we all dread spending time with because they just won't leave. Resign myself to entertaining PD during its permanent, and demanding, visit.

OR I can

2) Look PD in its wicked evil eye, put on the boxing gloves, and take it head-on. Study it. Build a mental picture of me without PD.  Use healing words, think healing thoughts, eat healing foods, participate in healing exercises. Find out how other people with PD are managing their symptoms through food, exercise, glutathione treatments, essential oils and other holistic approaches. Work at it like it's a full-time job. Work at it like it's my first priority full-time job since I have two now. One job pays the bills, and one might save my life.

PD...it's requiring action and a new commitment from me. If I don't fill the space in my life with this new job, PD will seep in like a silent noxious gas, filling every corner with suffocating invisible fumes.

PD, you will never be my friend. You are not welcome here. I'm declaring war right here, right now. No longer do I say, "I have Parkinson's Disease." Instead, I'll say I was diagnosed with Parkinson's Disease, or I exhibit PD symptoms. I don't claim this disease as my own, even though I might suffer today with symptoms that look like PD.

I'm at war, but I need help. I need the energy of my family and friends to infuse me regularly. I need the prayer support of people who love me. I need encouragement and new ideas from everyone I know. I need to be reminded that I am not alone. On some days I might even need to be carried. But, hear this: I am not pulling over and stopping. I am not giving up. I am not rolling over.

I'm fighting.

chttps://www.youtube.com/watch?v=xo1VInw-SKc

"Starting right now I'll be strong...and I don't really care if nobody else believes 'cause I've still got a lot of fight left in me."  Rachel Platten, Fight Song

I'll Admit it...I'm Afraid

I don't like talking about my PD symptoms. It's depressing to verbalize and acknowledge them out loud or, worse yet, in writing, right out there for the world to see.

I'll tell you right up front, this is not going to be an uplifting post. Today is one of those days that I just need to put some raw feelings on paper. That's one of the reasons I publish this blog:  to vent and pour out my heart without burdening those I love. Writing is good therapy for me;  I can say all the things I try not to talk about with my family and friends. I can eventually face the realities of my disease. I publish a blog for times exactly like tonight. So here it is.

Even though I don't like talking about my symptoms, sometimes I just have to. So, yes, I'm going to go there now:  my symptoms are worsening. My gait is worse, my manual dexterity has declined, I find myself walking in a forward, out of control manner I can only describe as staggering, and my balance is off.

The problem is that I have a difficult time with almost every medication. My neurologist has had me on every kind of pill, patch, and gel known to man, and I had reactions to every single one. One patch made me violently ill and caused vomiting, another gave me a rash, and yet another caused diarrhea. I finally tolerated Mirapex in low dosages, in spite of stomach pain and intense fatigue, so that's been my only medical remedy for the 3.5 years since diagnosis.

That's why it's scary to admit my symptoms...I don't know if I can tolerate medication to offset them. But there's one more medication I haven't tried -- one my doctor said is the gold standard in the treatment of Parkinson's Disease. He said he didn't want to start me on it before I needed it, but that he wouldn't withhold it at the cost of loss of lifestyle and livability.  It seems that the last bastion of hope is Carbadopa/Levadopa. So I called my doctor and asked to add it to my regimen.

He prescribed it, and I began it today. I am sure I'm just letting my anxieties bubble over, but my stomach feels crampy, I'm tired, and I don't feel good. I've taken 3 pills this first day, and I'm scared to death that I won't be able to tolerate it; that I'm already experiencing the beginning of a reaction. What would I do then? Just let my symptoms increase until I'm incapacitated? At the rate I'm going, I'm afraid it won't take long. I'm only 55 and I feel like I should still have some good years left in me. I'm not ready to stop working, start using a cane, or start wearing my disability like a badge. I'm not ready to have PD.

I used to be a teacher, and I never let my students say this, but I'm going to say it now anyway:  It's not fair. It's not fair! IT'S NOT FAIR!!

My husband and I attended a family picnic in a shelter we rented on a lake at an Indiana state park today. I told everyone to put on their praying shoes and pray hard for this medication to work, and for my body to tolerate it. If you're a praying person, I'd ask you to do the same.

I'm sorry for the rawness of this post, but sometimes you have to get real. This is my reality today. Thanks for "listening."

Short-Take: Back to Real Life

Well, it took exactly one day at work to plant my vacation-happy feet back on solid PD ground again...isn't that the saddest thing ever?!

I do not have any idea how many emails I had; I'm afraid to count. I can only tell you that I started with today's emails, and worked backward, trying to keep up with new ones as they came in. When I left work, I thought I was ready to move into last week's emails. I looked closer and realized the new section of emails was labeled "Yesterday," and not "Last Week" as I thought. Realizing I had only handled one day of emails was enough to push me over the edge, so I left!

And, answer me this:  How can a person get SO tired in one single day?! I pulled into the driveway and my husband was waiting to greet me. I was so tired that he pulled the car into the garage for me so I could go right in and lay down. I slept in his recliner for an hour. He does love me!

One remnant of goodness from vacation still helped me throughout my day at work:  the peace that keeps me from stressing out over every little thing in my day. I think vacation blew the cobwebs out of my head, and over the course of the week, dissipated and washed all the stress right out of me. I could tell I was WAY less stressed over my day than I would have been pre-vacation. For that I am grateful!

But this fatigue...my goodness! There has to be an answer, but I don't know what it is.

Vacationing with PD

Well, this is the first time we've taken a true, all-out, full-blown vacation since I've been diagnosed with Parkinson's Disease, and I think I was expecting it to be just like all our previous vacations -- chock full of activity and fun. I think I was expecting to suddenly switch into "normal," non-PD person mode, once I stepped out of the stress of work and the disciplines of everyday life.

But I didn't.

PD followed me all the way from Indiana to Colorado to Utah. It followed me every mile we traveled on Amtrak, and it kept me from sleeping in our Amtrak sleeper berth. It made me use the cane I just purchased when we walked the sandy path to the overlooks in Arches National Park. It made me too tired to get out of the car at some of our scenic overlooks.

I honestly thought that when the stress of work melted away, I would become a new person and the PD would fall away with the stress.

This vacation was planned around our 25th anniversary, and I was disappointed that my husband still had to be a caregiver, and that I still needed care. Every day when I woke up, I thought that day would be the day I caught up on my rest and started feeling good. I mean, if vacation and rest can't give you a new lease on life, what can? I wanted us both to get a break from this disease, but we didn't. On the upside, what we did get was a week of sweet together time, relaxation, a break from work, and an opportunity to see God's spectacular sense of artistry at its best.

Lessons learned? PD will not be ignored. It will not be minimized or de-emphasized. It does not take a vacation when I take a vacation. It's insistent, ever present, and demanding.

Here's what I will do differently in the future:
1.  I won't schedule activities on every day of vacation. Some days will be set aside for resting and catching my breath.
2.  I will make provision for sleeping at night. Maybe I will bring sleepytime tea or some other remedy, but I will have a plan for sleeping.
3.  I'll pack lighter. I'm not able to carry as much as I used to, and it's too much for my husband to handle it all alone.
4.  I'll ask for help more insistently at the train station in Chicago. If you don't yell, you won't be heard. I paid the price for not asking for help during the 2 days following the ordeal at Union Station. We didn't know where we were supposed to go to pick up luggage from the baggage claim, or where to board our next train, or how to find a "Red Cap" to shuttle us and all our bags to and from the train. Now we know. But I lost 2 days recovering from exhaustion after this particular train experience.

Finally, here's the happy news:  we had a GREAT time together, and saw and experienced new things!

Below is a taste of our vacation in gallery form -- I hope you'll enjoy looking at some of our pictures!

The sweet man I married!

In Arches National Park

The Colorado River

Sunset in Dead Horse Point State Park

Ready for dinner on our anniversary

"Ths sun comes up, it's a new day dawning.
It's time to sing Your song again.
Whatever may pass and whatever lies before me...
Let me be singing when the evening comes.
Bless the Lord, Oh my soul,
Oh my soul, worship His holy name.
Sing like never before, Oh my soul,
I'll worship Your holy name."
Matt Redman

Beautiful road ahead...

This looks like the 3 Wisemen bearing gifts!

My sweetheart of 25 years!

Ready for dinner! 

Our Amtrak train, The California Zephyr

What Makes Me Sad

It's late and I should be in bed but I'm not tired.

So...I sit here and watch "Beat Bobby Flay" and half-heartedly put some screen-time in on social media. Facebook is too much drama, so I surf over to a site for Parkinson's people. And that's when I get sad.

There are people in every condition and in every stage of Parkinson's represented on this site. People who exercise and people who don't. People with good attitudes and people with bad ones. People who encourage and inspire, and people who drag you down and wear you out. But that's okay. That's what the site is for, and I can handle that. I choose to participate. That doesn't make me sad.

What makes me sad is reading the hearts of the caregivers who post -- mostly they are the spouses of people with Parkinson's. They love their spouses, but they are tired and discouraged. They echo the same sentiment over and over:  they miss the man or woman they married. They miss their partner's ability to participate in the same activities they used to share. They miss the joy of partnering together with dreams and plans for the future.

What makes me sad is knowing I'm doing that to my husband. I know he misses the old me...so do I.  He tells me he wishes I could walk better, and prays for me, and helps me dress and undress on hard days or when I'm especially tired. He helps with dinner every night. He loves me just the same as he always has, and he faithfully shows me the depth of his love every single day.

But I feel guilty. I know what I'm doing to him, and I can't stop it. It's not fair to him. First, because of me, he has no children. Now, because of me, he has no future. When I tell him I'm sorry for those things, he assures me he would do it all over again, that he would never want anyone but me, and he means it. But it breaks my heart. It's almost unbearable to know that I am the thief that steals his joy in life.

I don't know how to fix it, and I don't know if I can live with it. On the other hand, I don't really have a choice. I have Parkinson's Disease and I sometimes need help. I want to be whole again, and I want to be who I've always been, but I can't stop what's happening to me.

I don't really have a good way to pull this together and end it, so I'm just going to say good night.

But not before I say once again how much I love my husband.

We are an Army, Looking for Meaning in the Storm

It's been a while since I last posted to my blog. I was ready to write last week when something bad happened and derailed me.

My brother -- my only sibling -- was in a racing accident the morning of February 13. I'll spare the details, but his car caught fire during a race, and he suffered life-threatening 1st-3rd degree burns on 7% of his body and face. He was airlifted to a world-class burn unit in TX, near where he was racing at the time. Our family was immediately plunged into crisis mode, where we still remain.

It's been a family cooperative, this getting through crisis. My brother is healing better than we might have expected and we await word on whether he will need surgery. We are so grateful.

Through all of this, however, and through my own Parkinson's Disease made worse by recent stress, I am left to ponder something:  How are we validated for our struggles? When do we get to know it was, indeed, worth it? Where's the glimmer of meaning that will carry us through one more day? Am I the only one who ponders such things?

I'm not asking why (at least not today!). I'm not expressing anger. I'm not questioning God. I'm just asking for our experiences -- mine and my brother's, and yours -- to have meaning. Tangible, measurable, quantitative meaning that leaves us feeling glad to have been a part of it, in spite of the pain.

If I can share my experience with someone and help them through their own pain, that's meaningful. If I am changed into a better or more godly person through my pain, that's meaningful. If God re-purposes me for something I'm now uniquely qualified to do, that's meaningful.

Finding meaning in the storm is the only way I have found to survive it. God forbid I should come through the storm, and emerge as exactly the same person who went into it. I want to come out wiser, or stronger, or better, or happier. I cannot bear coming out just the same.

God grant us -- you and me, Stephen, and anyone else fighting your way through your own storm -- God grant us meaning we can measure, change we can see, and hope for tomorrow.  

As I look through Facebook, I try to pull myself out of my own little world long enough to see what others are going through; I try to keep from focusing on just my own family's trauma. And then I see it -- pain and suffering. So many of my friends are in crisis. My family is not alone, we are not the only ones fighting, we are not the only ones in quiet pain. There's an army of us marching through the storm. May we march together, not in solitude. May we find meaning together.

So, Army, let's fight, fight, fight! Let's determine to be hopeful. Let's emerge better on the other side because of the pain. And let's encourage each other as we walk in step together in this new day.

May God bless us all today. Amen.



To help defray my brother's medical costs go to:
www.gofundme.com/WRLRacerReliefFund

#RaceDad

An Admission

Okay, so here's my ugly little secret:  I'm feeling terrible--worse and worse by the day. I try to hide it, keep on working regular hours in spite of sleepless nights, and carry on conversations as if nothing is wrong.

But something is terribly wrong, and I don't think I can live with it. All my Parkinson's symptoms are in decline. I'm not sleeping the night through because of pain and nightmares. I'm having head-to-toe pain day and night, and I'm not sure why. My balance is off in an alarming way, and my tremors are impossible to hide. Walking in an unaffected way is nearly impossible, and typing is becoming a chore. A couple of days ago, my left foot froze up for a second, and wouldn't move. And that's just the tip of the iceberg.

It's time to draw a line in the sand. I can't take it any more. I'm done. My pain and discomfort finally outweigh my desire for bad-for-me foods.  Here's what I know I can do:

1. I may not be able to put in all the diet elements that Yolanda wants me to put in, but I CAN take OUT all the bad ones! No more sugar, salt, yeast, black tea, processed foods, tomato-based products, or other high-acid foods. I am convinced that will help my pain level.

2.  I know which supplements help me, and I will order them, and not let myself run out. No wonder I feel bad all the time--I'm always out of one or more of my supplements. Here are the ones that help me:  Protandim, DoTerra vitality pack vitamins, Serenegen, and Organo coffee. How good could I feel if I put all the things that help me together in one regimen?

3.  Exercise. This really doesn't belong in the category of things I know I can do, but it needs to happen. I just have to figure it out...really fast.

It's getting scary enough that I'm willing to do the hard stuff now. Just sayin'.

Becoming Real

"You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

This is a quote from The Velveteen Rabbit or How Toys Become Real by Margery Williams. I saw it posted on Facebook today outside of any real context; regardless, it jumped off the screen and into my heart, suddenly ripe with personal context and meaning. I realized that since the onset of Parkinson's Disease, I've been feeling very Real.

For once, words fail me.

The words that are finally coming to me aren't particularly uplifting, but they're true:  Becoming Real ruins you; it breaks you and scars you; it changes you, re-shapes and re-purposes you. At the end, it's all worthwhile...at least, according to the story. I can't speak to that from personal experience yet.

Do you remember the story of the Velveteen Rabbit? It's a short, easy read, written as a children's book. You can find it here:  http://digital.library.upenn.edu/women/williams/rabbit/rabbit.html

The basic story line is that a brand new, stuffed, Velveteen Rabbit becomes a little boy's favorite toy. The stuffed rabbit asks one of his fellow toys, the Skin Horse, how he can become Real, hence the opening quote of this post. As the story progresses, the Velveteen Rabbit becomes Real to the little boy because he was so well loved, though the becoming caused the rabbit discomfort. At the end of the story, the rabbit is discarded, but a fairy saves him and makes him really Real.

The author is right about this:  becoming real doesn't often happen to "people who break easily, or have sharp edges, or who have to be carefully kept." I wish it weren't happening to me. Becoming Real hurts too much, costs too much. And I don't know if finally being Real will be worth the discomfort.

There's one thing in the quote that I'm not sure about, though:  "once you are Real, you can't be ugly except to people who don't understand." I certainly don't feel pretty when my coordination is off and I have trouble walking. I think I'm in that awkward stage that comes after you get a bad diagnosis, and you're still fighting with it. You haven't had it long enough for it to knock off your rough edges, and make you a beautiful person; only just long enough to make you good and mad!   

I guess it doesn't matter so much. I was chosen for this. It is what it is. If there's a reward, great. If there's not, I guess there's not, and that's just how it goes.

Some days are puppies and rainbows for me; some days aren't. Lately, it seems tears are never far. It's part of my life now, and maybe if I share it, it will help someone. 

That's about the most I can hope for tonight while I'm becoming Real.

BELOW:  Meet my very Real teddy bear, Fuzzy. He's been with me since I was six years old. I found him outside a storefront on a rainy day. He was wet and lonely and I felt so sorry for him that my grandma brought him home and cleaned him up for me. He lost his nose--not to speak of all his fuzz--so now he has a red stick-on nose. His back and his armpits have been ripped and sewn shut again, and the stuffing is gone from his neck, so his little head droops. But he's Real. I wonder if he thinks it was worth it...

Insecurity.... Sorry, this is a rant !

Insecurity -- I hate it!

I'm old enough to have earned the right to be comfortable in my own skin, and I had a few good years of doing just that. They were the best years ever. Then came Parkinson's Disease--that burglar, that thief, that enemy!

PD broke in uninvited, and is in the process of taking what it wants, and I feel helpless to stop it. Every day I watch it walk out the door with something that belongs to me. This week, it was my confidence, and it just makes me so mad!

People can tell me that I'm still the same me, and I should still be confident all they want to, but it simply doesn't work that way. It's just so much jibber-jabber from well-meaning people who want to help me feel better. (If that's you, by the way, thank you -- I really do appreciate the good wishes. I'm just on a momentary rant tonight. Bear with me...)

The fact is, my self-confidence walked out the door with PD. I watched it going and I couldn't stop it. When I am in new situations, trying to present myself professionally, my first prayer is that I won't stumble or fall. My next concern is about tremors showing, and about my leg visibly shaking. And, of course, I'm always concerned that I don't limp, and that I'm too slow. These are the years I'm supposed to be comfortable and confident -- I specifically remember earning that right. This week, I am particularly angry that PD stole it away.

If I have to walk across wide open spaces, I am self-conscious about being slow or limping. If I have to step into a small space, I look for something to grab onto in case I lose my balance. If I have to do something that requires coordination, or fasten something small, I am not certain I can accomplish it. If I have to write something, I try to hide it because I know it looks atrocious. (I used to have teacher handwriting, so that makes me especially mad.)

I may someday say that I am glad God gave me PD because ____________, but I am telling you right now that I will never make friends with PD, and it will never cease to be the enemy. I don't want to get used to it. I don't want to accept it. I don't want to learn to live with it. Maybe that's one of the steps of grief, I can't remember, but it doesn't matter. I don't want to get to that point. I'm not okay with PD.

While I'm never going to make friends with it, at the same time, I DO want to someday be able to stand up and say, "Thank you, God, for using this physical infirmity to develop XYZ characteristic in my life." I know that's a fine line to walk, but it's one I'm going to try to find. Can I be thankful for what develops in my life based on an infirmity, while at the same time declaring the disease to be the enemy? I think I can.

In the meantime, I feel confident in saying, "Parkinson's Disease, you're not welcome here!" And I know my cat agrees with me, even if no one else does. Thank you, Molly!

To Caroline

October 15 was Pregnancy and Infant Loss Awareness Day, and, having lost the only baby we ever conceived, I felt the need to write about it. I know it doesn't pertain to Parkinson's Disease, the main objective of this blog, but I wanted to write and post this piece anyway.

If you have experienced loss, I hope this post will remind you that you are not alone.

To Caroline:

My darling, the first arms to hold you
Were your Heavenly Father's arms,
Not mine.
The first sounds of your little voice
Echoed in Heaven's ears,
Not mine.
The first kisses to brush your forehead
Were angel kisses,
Not mine.

My precious, when first you awoke in Heaven,
Could your eyes see the heart-broken tears
we cried?
When the angels rocked you to sleep,
Could your ears hear the lullabies
we sang?
When the arms of Heaven held you tight,
Could your little heart feel the love
we sent?

My sweetheart, you were the most beautiful gift
Your mommy and daddy never got
to open.
You were the sweetest sound
Your mommy and daddy never got
to hear.
You were the most precious bundle
Your mommy and daddy never got
to hold.

My baby, if we could have seen your lovely face,
Would your mouth, your chin, your nose have looked
like ours?
If we could have looked into your little eyes,
Would the eyes that gazed back at us have looked
like ours?
If we could have tickled your tummy happy,
Would your precious smile have looked
like ours?

My Caroline, even before you were conceived,
Every day we thought about you, every day
we loved you.
Even when we were trying to hold onto you,
And later, when we knew we couldn't,
we loved you.
Even when 14 years have passed us by,
And it seems life has moved on, even then, forever
we love you.

There Will Always be "Those Days..."

I don't know what it was about this day...

Whatever it was, I wasn't sure I was going to survive it. But clearly, I did.

Work was challenging, having to deal with the stresses that go along with lending, walk-in members, scheduled appointments, and technical difficulties. When I left, I walked away from phone calls not returned, paperwork not completed, stacks of papers littered across my desk in no particular order, and at least 20 unanswered emails.

By the time I headed home, tears weren't far away. All it took was a couple of horn-honking, hot-headed road ragers to bring the tears brimming over and rolling down my cheeks. Mean people. Usually I have a lead-foot and I'm pushing the cars in front of me. Tonight, somehow I wasn't fast enough. Someone honked at me because I didn't turn right in front of rapidly approaching traffic. Someone else honked at me when I turned left onto my road because, apparently, I didn't turn fast enough. That was the last straw. I walked into my house bawling my eyes out, and let my husband put me to bed for a rest before dinner.

When things like today happen, it's so easy to feel sorry for myself. It's so easy to let the snowball of miseries start developing. It's so easy to start down the road of anxiety about Parkinson's and how it's going to eventually affect me.

But tonight I will not allow it. I will not allow it because I specifically remember hitting a mental milestone, turning a corner. I remember deciding to keep a positive attitude. I remember blogging about it. I remember it's within my control, and I don't have to allow myself to go down that road.

So, here I am on a rough Friday night, declaring that it's okay. And it is.

A Conversation with Myself

This post might seem a little strange, so I thought I would provide some background for readers. On my last visit to the Life Wellness Center, Yolanda gave me a homework assignment. She asked me to write a letter from the part of me that wants to get better, to the part of me that wants to procrastinate, cheat, and be lazy.

Here's the letter I turned in to Yolanda for homework. Warning:  it's pretty brutal!

"So, Dory...do you intend to make a permanent change, or do you just keep telling yourself that?

When you came back from medical leave, you said you were going to exercise twice a week. You said you were going to stop putting in overtime at work. You said you were going to change your diet permanently. You said so many things you didn't do. Why didn’t you do them? I believe you meant them, so there must be a disconnect between your intentions and your actions. Do you know where that comes from? You know very well that until you identify the disconnect, you can’t fix the problem.

Eating healthy from the garden

Do you not understand that your life is at stake here? it seems that you don’t truly believe that, because if you did, you would behave differently. You act like you are getting away with something, or that you are smart enough to cheat and still beat PD. I have news for you:  you aren’t getting away with anything. It’s just that you haven’t been called on yet to pay up. Payday is coming. Don’t you believe it? You SAY you do, but you act like you don’t. There’s an old saying about that: Actions speak louder than words.

Think of your cheating and skipping exercise class as racking up a big charge on a credit card. There WILL come a payday...nothing is free. When the bill collector comes calling, you won’t be able to pay. Your bill collector is named Parkinson’s Disease, and when you can’t pay, he will put you in a wheelchair. Wake up, Dory!

The Climb exercise class is held at Mt. Pleasant Christian Church

Your actions are killing  you, bite by bite, one stressful day at a time, and you don’t know it.

I know your work is becoming less stressful, and I’m glad about that, but you are counting on someone else to make your life better, and then trying to take credit as if you did it. It’s not enough. You have to create a formula that works for you, and then do it.  Work is just one piece of that formula.

You and Mike discussed how you know for a fact that Yolanda and Joshua were divinely appointed to help you. I know you know that, but why aren’t you acting like it? Why aren’t you listening and following direction you’ve been given from sources that are, by your own admission, God-given?

Where’s the disconnect? You MUST figure that out .. NOW. Time is up, clock is ticking, PD has his big wheelchair parked at your door.

Here’s a suggested plan:

1. determine priorities in life (That's pretty much going to be physical therapy, writing, exercise class, work, and church.)
2. live accordingly
3. weed out everything else, and don't feel bad about saying "No"
4. find a way to align your job with your priorities, or find a way to survive without the income and quit
5. Get close to God so you can hear Him when He whispers direction to you

Now go do it."

The Franklin farmer's market -- another place to find healthy food

When Life Gets Tough

It's been a rough couple of days and I haven't had it in me to blog much. I feel beat up by my Parkinson's symptoms and by my work.

For whatever unknown reason, it feels like someone lit a match to my symptoms and started a bonfire I can't put out. I can't seem to walk properly, my tremor is out of control, brain fog has become a full-blown cloud, fatigue pours on more and more, and I don't have the energy to smile or move fast. At work yesterday, my typing ability was significantly worse than usual, and I felt like my left arm and hand weren't getting proper circulation. It all came to a head when I got home, and I really thought I was having a stroke or something. The good news is that I seem to be relieved of a lot of those symptoms this morning (thank you, Lord).

At work, my co-workers are kind to me, but the general public not so much! The people I service with loans are demanding, and quite vocal about getting their way, copying my bosses on emails, and so forth. Additionally we are understaffed, plus one person is on vacation. I'm dreading today because we'll have no tellers on the line--it will just be my manager, the other lending person, and me. We'll be running the teller line, plus all the administrative and lending details.

Some days, life doesn't turn out to be what you signed up for. I wish I had some really wise thing to say about that right about now, but I don't.

It seems odd to me that the things that come to mind to help me through this time are from blog posts I wrote earlier. I expected God to speak to me through Scripture or through someone else's encouragement. I didn't expect Him to use my own words to bolster me.

Just recently I wrote about how I learned a new fix for self-pity:  pray for others. My friend, Jason, has surgery today, and needs prayer. My niece was recently hospitalized, and is still not 100%. One of my former students lost her 61-year-old mother to cancer on August 31. There is no shortage of people who need prayer right now, today.

I also recently wrote about how God impressed me through my reading in the book of Joshua in the Bible. Joshua had just lost his friend, Moses, who had also been Israel's leader, God came to him in his sorrow, and instructed him three times in one chapter to be strong and very courageous, and gave him instructions on how to lead the nation of Israel, who had now been placed under his leadership. Talk about a big job! He must have felt so unprepared. How I'm feeling probably doesn't hold a candle to how overwhelmed he must have felt.

Part of my most recent post, before this one, was about how I am learning discipline from what I am going through right now. I hope I can view the trials of the last couple of days as part of that discipline. In one sense, if I never had bad days (or bad weeks), how would I know what a good day looked like? How could I be thankful when times were good if good was all I knew? I pray that I can regain that perspective quickly, because I feel like I need ammunition going into this day.

Re-reading the sentence I just wrote about needing ammunition....what if I could look at the people God puts in my day today as individuals with lives full of hurts, accomplishments, desires, and struggles just like my own.....instead of as an oncoming tidal wave against me that requires me to be armed and ready?

It's 7:22 AM and my whole day is ahead of me. I'm going to try to apply the wisdom God has already provided to get me through this day.

Would you like to join me?

Two Roads I Cannot Travel

It's human nature.

When bad, difficult, or debilitating things happen, we start looking for the root cause. If we know why it happened, we might be able to undo whatever caused it. It's humanity at its finest:  problem-solving, helping ourselves, commanding our own destinies. Or so we think.

What happens when that tactic doesn't work? We keep trying to solve the puzzle. We start going down roads we were never meant to travel. The two roads I keep finding myself on are the roads of guilt and anxiety.

Guilt....When I finally realized I can't stop the disease, I started to spiral into depression and self-deprecation, and occasionally I still end up on this road. What did I do to make this happen? How could I have avoided it? Am I being punished for something? What if I had never done XYZ? Is God mad at me?

Believe me, I have asked every one of those questions, and, in my own human frailty, could not find an answer. The only recourse I have is to believe what God says in His Word. (I'm sure God doesn't want to be my only, or last, recourse, but I'm just being real here!) My sins are forgiven, my debt is paid (I John 1:9), He's forgotten my past and removed it from Himself as far as the east is from the west (Psalm 103:12). And besides all that, God doesn't work that way. He doesn't reach back years into your past to find a sin big enough to suddenly zap you unexpectedly with Parkinson's Disease. His disciplines are always timely, never late. His disciplines are always for the purpose of bringing us back into fellowship with Him, not just to punish wrong-doing.

When you can't find a reason, look to His Word.

The second road I find myself travelling is anxiety. Dealing with a degenerative disease, I start asking pointless questions like: What's ahead of me? How can I stop it? Who will take care of me? How many productive, functional years do I have left? Some days I just can't stop going down that road in my mind.

I'm there at some point almost every week. I saw someone in a wheelchair at Cracker Barrel who had Parkinson's, and had clearly lost all ability to function. I know it's going to be me someday and I can't stop my mind from taking me there. Another person with Parkinson's Disease lost his balance and fell in our lobby at the credit union, with some fairly serious injuries resulting from his fall. How long before that happens to me?

God's Word has an answer for that, too. If He watches over the lilies of the field, and the birds of the air, how much more will he watch over me? (Matthew 5:25-34). Alternatives to my worst case scenarios? 1) He's able to perform miracles, 2) we might find a cure, 3) I might be able to make progress reducing my symptoms, or 4) any number of other solutions could surface that might resolve my situation for the better. Simply put, He's in charge, not me. If the God who stilled the storm on the Sea of Galilee decides He wants to heal me, He certainly has the ability to do it (Matthew 8:23-27). If the God who spoke all of creation into existence decides to speak healing to my body, nothing can stop Him.

But in the meantime, while I wait and try to stay out of the spiral, I wake up to another day with a limp, slowness, a tremor, loss of balance, foggy brain, and fatigue. Some days I am sure I'm getting worse, not better.

I want to speak healing and recovery. I want to believe. I want to find purpose for my situation. I want to wake up with hope every single day.

Don't look back. It's pointless because I can't change the past. Don't look forward. It's useless because I can't control the future. Travel today's road today. Leave yesterday's road behind and leave tomorrow's road for another day.

And now... just because I love this poem and because it very slightly relates to this post, here is "The Road Not Taken," by Robert Frost:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear,
Though as for that, the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet, knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two road diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference.

It's Been a Hard Day

I'm tired.

When you get older (or when you have Parkinson's Disease), tiredness is cumulative. If I did too much yesterday, I'll be tired today. If I add to that tiredness by doing too much again today, I may be so tired that I can't do anything at all by tomorrow.

And that's exactly what happened. Yesterday I went straight from work to the Life Wellness Center, and got home around 9:30. Day 1 of too tired. Tonight after work, we went out for a cheap dinner, then grocery shopping, then a gas station stop. Home around 8:30 PM. Day 2 of too tired.

My body is so weak I can hardly move and my legs feel like jelly. My walking gets worse when I am fatigued, and while I was in Kroger I could hear my feet slapping against the floor. I thought that was a bad thing, so I decided to try to practice my walking. The grocery store is a great place to practice, with its wide, level, straight, cement walkways....heel, toe, heel, toe ....but all to no avail. My body was too tired to take the commands my brain was trying to send. My left foot kept dragging.

Worst of all is when I can't hide my symptoms at work. A couple of days ago, on the front end of all this tiredness, one of my customers said, "You're moving kind of slow today." I  know it was meant in the best possible way, but I didn't know what to say, and it made me uncomfortable. Things like that have happened a lot to me lately and I just hate it. I don't want people to notice, or feel sorry for me, or make me feel self-conscious. I guess they don't know better, but what am I supposed to say? "Oh yeah, I have Parkinson's Disease, just ignore me."    

I know most of the time I am walking with a limp now, but I can't help it. An increase in medication would help that problem, but, as you might remember, my body won't tolerate any more of any of the medications appropriate for my stage of the disease.

I want it fixed. Now. Every single day I feel that way.

It's not in God's plan, apparently, and, even though nearly 3 years have passed since my diagnosis, I still don't understand why. I'm not good at being sick, and I don't want to get good at it. But I do wish God would let me know the "why" of it.

A couple of days ago, when I went public with my blog, a good friend commented that I am a strong woman. I've been thinking about that, and decided two things:

1)  (And this one is the right answer) Whenever I have any strength, it came from the Lord. Songs and scriptures have been written about that, but right now I can't think of a single one. But I know it's true.

2)  (This is a little more un-spiritual) Everyone thinks people who go through difficult things are strong. It's not that we're strong, it's just that, well....what else are you going to do? When you have to move, and the only way to go is straight ahead through the swamp, what else can you do? You just start walking through the swamp. Right?

I'm tired, and none of my body parts want to work, so I'm going to say good night. Tomorrow will be better.

Short-Take....on Eating

So, I didn't do so well this weekend.

I'm on a very specific diet intended to reduce acid in body, to enable lymph fluid to flow more freely and blockages to be opened. I'm finally getting it -- how to reduce sodium, what creates acid, and the value of being mindful about what goes in your mouth.

These days the taste of salt in my food jumps out at me, and is even unpleasant (sometimes). I don't crave sugar any more; I don't even miss it. I do still miss potatoes, pasta, pizza, and potato chips. Something to do with foods that start with the letter "p" I guess!

Most of my cheats over the weekend, therefore, have been eating too much of allowed foods...is that a better kind of cheat? I don't know. I'm sure Yolanda will help me with that at my appointment later this week!

The really big cheat happened today, and I wish I could take it back. My 97-year-old grandmother comes over every Sunday, and I always make dessert because she has a sweet tooth that won't quit. She would miss it if I didn't. So, today I made a tiny dessert, not planning for me or my husband, who's on my diet with me, to eat any. I made a microwave cake in a mug -- easy, fast, and small. When it came out, it was too much for my grandma, so I divided the extra amount between my husband and me, which wasn't very much.

I ate it. It was okay. Wish I hadn't. Could've lived without it.

I started thinking, maybe it would've tasted better with ice cream, but that didn't really sound all that good, either. Then I realized something. I just don't care for sugar any more, and that's a good thing!

Small victories, hard won. Still a victory, though!

Be Strong and Courageous

Joshua 1:5-6  "I will not leave you or forsake you. Be strong and courageous."

Joshua 1:9  "Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."

Or whatever disease I have. Or however hard it is to walk right. Or however much my hand tremors. Or however tired I am. The Lord is with me.

When I feel alone. When no one understands. When I have silent tears no one sees. When I feel afraid. He will not leave me or forsake me.

He would not command me to do something I cannot do. I will be strong and courageous through His power.

Joshua was commanded to be strong and courageous because his leader, friend, and counselor, Moses, had just died. God chose Joshua to take Moses' place as the leader of the Hebrew nation as they journeyed into the promised land. He must have felt grief-stricken, alone, and insufficient for the task. But God had a plan for him, so he was commanded to put his human emotions aside and become strong and courageous.

God has a plan for me, so I'll be strong and courageous. I'm feeling doubtful, but I'm trying.

That was my jewel for the day, and after last night's tirade, I thought I should share!