Asking Why

dscn0211

Some are raised not to question authority. That is not a bad thing, in my opinion, when put in the right context. We don’t question our parent’s leadership. At least not noticeably! And then we are taken to church, where some of us are taught not to question God’s authority.

That is me. And as for me, that looked like never asking ‘why’. As a younger person, I took it at face value. I didn’t question my parents, I didn’t question God. Growing up, I conceded that I would not question God because He was sovereign and had a reason for everything that He did. I didn’t question it. Even if I may not have understood it, I didn’t question it.

The other day I finally got angry. I hadn’t gotten angry yet. But it was time. I had gone through the first stages of dealing with my Parkinson’s – sadness, grief. But never anger. It had been two years and it hit me. I am only 47, my doctor confident that I’ve been struggling with it since 32, when quite possibly it had been misdiagnosed as systemic lupus. But for me, it’s been two definite years of knowing that I’ve been labeled with Parkinson’s disease.

And that day I was angry.

Because I’m only 47.

Because my right arm and my right hand shake.

Because my right leg shakes and my right foot as well.

Because my jaw and face shake.

Because I can’t smell roses anymore.

Because sometimes it’s hard to swallow and do other things that I used to not think about like button my pants or put on my watch.

Because I get tired more easily and it’s hard to make it through the day without a nap.

Because I am not as strong as I used to be.

Because my foot drags and I often trip.

Because I have fallen down the stairs twice.

Because my mind always seems scattered. (Hey, it’s my disease – I can blame anything on it!)

Because I don’t sleep well.

Because I get sick from the medicine.

Because I have Parkinson’s.

Because I’m only 47.

Those are all pretty good reasons to be angry, right? And, I wasn’t necessarily angry at God, but perhaps with Him. He allowed this to be, but didn’t cause it. So, we got angry together. And in my anger, I wanted to ask, “Why?”

But I didn’t.

Instead, I sat there as He dried my tears and He whispered, “Jesus wept and He also asked why.” I stopped crying and thought about what He had just said to me.

“My God, my God,” Christ cried out on the cross, “why have you forsaken me?”

He was not condemned for asking His heavenly father “Why?” There also seemed to be no answer there that we are aware of – at least not an obvious one. But I am quite confident the answer was there and I am quite confident that Jesus already knew what it was. Just as I usually know the answer to the why, making it useless to even ask why.

Why do I have Parkinson’s? Why not? Why not me instead of someone else?

Why does my friend have kidney disease?

Why is my son an alcoholic?

Why did my aunt have to die from medical neglect?

Why does a friend of mine have to care for children whose biological parents don’t care enough to want to get off of drugs?

Why?

Why?

We can ask why until our list is exhausted and the answer can be as simple or as complicated as we wish it to be.

The answer to the question of why for me is that God is in control, sovereign, and while He never gives us more than we can handle, He will allow what we can handle. Why? To make us stronger and to come along side and help to make others stronger.

So, ultimately, I have Parkinson’s. And if just one life is encouraged, if just one life is strengthened, then that is why I have Parkinson’s. And that brings me joy.

Life Lessons Using A Rubber Duck

Well, it’s time for an update of some sort, don’tcha think? Time goes by sooooooooo fast and other days, seems so slow. Sounds like a song.

I met a new PD’er online. Now there’s three of us who are addicted to online PD conference chats at 3 in the morning because the RLS is keeping us up (and alert) or the meds to stop the RLS is keeping us up (and alert). Which do you prefer? Survey says…

Well, we are trying to sell our home. Not easy these days, you know. I was struggling with all of the issues surrounding this big thing in my life and for this entry, I wanted to share what I learned. This comes from another blog I do called Planting Gardens – www.plantinggardens.blogspot.com. Here it is:

LIFE LESSONS WITH A DUCK
by Sherri Woodbridge

I have come to my mom and dad’s, to spend some time with them. I think I am also trying to spend some time getting my emotions, feelings, thoughts and feelings under control. I cannot stop crying when I think of my kids and having to leave them, not knowing the next time when I will see them again.

Is that what is known as the empty nest syndrome? Is there some way to get those feathery fellows to fly home? Is this part of ‘letting go’? I suppose it is, but surely I do not have to like it. I am most certain Paul did not like going to jail and yet, he praised God while he was there.

There is a song that goes something like this:

Blessed be the name of the Lord

Blessed be His name

He gives and takes away

My heart will truly say…

Lord, blessed be your name.

Every blessing you pour out,

I’ll turn back to praise

And when the darkness closes in,

Still I will say,

Blessed be your name.

He gave me my family and in a sense has chosen to take most of them away by moving them to other parts of the country. In this darkness that seems to be enveloping me, I can choose to cower to it or I can choose to praise Him in spite of it. Will my heart truly say, Lord, blessed be your name?

I am awake and the rest of those in the house are sleeping. I have opened the shades to watch the water rush by in the river before me. It is running fast and the river is full.

A duck is floating down the river. He floats alone, seeming quite content and to be enjoying his trip. As the river carries him downstream, he does not fight it. Then he appears to slow down and drift to the side, sitting for about ten minutes as he preens himself.

For some odd reason, I feel anxious for him as he wades to the side – alone. Where is his family? Where are his friends? Why is no one else coming? Doesn’t he know that if he keeps going and doesn’t go back he’ll most likely drown at the falls?

A thousand thoughts crowd my mind, as I panic for this duck. Then I notice – he doesn’t appear worried at all. He is still quite content, over there on the side by himself.

I can be like that duck, if I choose. I can allow God to take me downstream, through rushing waters, knowing not where the river will take me and enjoy the ride – alone. I would prefer to be traveling down that river with all of my family around me, knowing they are there if I need them – being there if they need me. But ultimately? All I really need is to trust God and lean on Him alone. All I really need is… Him. He will take me safely and securely, allowing me to drift off to the side every now and then to find renewed strength and rest.

I continue to watch that duck and as he starts back out for another jaunt, he only goes about ten feet on his next venture before trying to go back upstream – back to where he came from. As I watch him, he struggles in his fight, going in the opposite direction from where the river is trying to take him.

It is then that I realize – that is what I am doing. I am fighting God. I want to go back upstream to where I came from, to how it used to be – Sunday dinners with everyone there, game nights, making homemade ice cream, watching Boo – seeing her smile, hearing her laugh. Yet, for some reason, God has taken me down this river of life. It
is a river that twists and turns and even so, while not having the slightest idea of where it is running to, unaware of what is around the bend, oblivious of where I am going to end up, I hear Him whisper, Will you trust Me?

Will I? Will I drift to the side and rest a while, allowing God to be the one to fill the hole in my heart? Will I sit there with Him, letting Him be the one who dries my tears as He pushes away the darkness that surrounds me? Will I realize that He is the river that takes me to unknown places? Will I quit fighting Him by trying to swim back upstream to what used to be?
Will I turn to Him, with an aching heart and still say, Blessed be Your name?

In surrender, I pull up my webbed feet that have become strong from fighting and trying to go my way, and I allow Him to bring me to His side and rest.

Yes. I will trust Him. After all, He is all I need.

Oh Lord, forgive me. This morning I prayed for new eyes to see you in my life and you gave me a new picture by using, of all things, a duck. Help me to be like that duck – content with just You – needing only You. Help me to float down this river of life with You, knowing You will take care of me, pushing away the darkness that closes in. When I am tired and my heart aches, pull me to the side and hide me under Your wings, just as a mother bird protects her young. Then, when it is time to float again, let me not look back and want to go back upstream, fighting You in the process but to look ahead, even if I don’t know where You are taking me. I want to trust You. No matter where You take me or how I may get there, at each turn, I want to look to You and say, blessed be Your name.

I would encourage you that if you’re struggling with anything today, there is a God who cares and is waiting to take you under His wings and hold you close. All you have to do is… let Him.

Life’s Disappointments

I am writing this for Saturday morning, for the iTeam.

The iTeam is a group of four women, of which I am one. We all met on the internet, via support groups for PD. We were all meeting today in Georgia for the Young Onset Parkinson’s Disease Conference slated for this weekend. I say ‘were meeting’ for now, I am not. I missed my flight.

Sure, I shed a few tears. Well, maybe several. However, I didn’t sob. I didn’t swear. I didn’t give the employee who sent six people with tickets in their hands, ready to check in – all be it with 45 minutes until take off – I didn’t give him an icy stare or think bad thoughts in my head. (Those emotions will come later -ha). Yet, I was surprised at my immediate reaction.

Getting mad, passing blame will not make this better, and God works all things together for good to those that love Him and are called according to His purpose.

Wow. Where did that come from? I guess I’m growing up – a little bit – again. Nevertheless, I am disappointed. Disappointed that I will not get to meet these three women who have become very dear to me. Disappointed that I will not hear the talk about DBS (Deep Brain Stimulation) that my doctor is recommending that I have done within the next year. Disappointed. Just plain disappointed. And yet… I am joyful.

I went to see my neurologist last week and he asked his normal questions. Someone usually goes with me to these appointments to be my personal memory assistant. That day, my husband went. At one point, he had to leave the room and as he closed the door behind him, my doctor turned to me and said, “Good. I feel like you can never say what you want when someone is here. So tell me, how are you doing? How are your moods?”

For those of you that are not very familiar with PD, depression is one of the main symptoms we get to deal with on a day-to-day basis.

“You have a lot of reasons to be down right now.” Then, he actually listed all the reasons I had to be down as he counted them on his fingers. (He’s got a great memory!)

“Your husband’s out of work. Your daughter just graduated and is trying to find a job to pay her loans. Your son and his wife just moved away with your new granddaughter. Your other son is trying to find his way through life. You have PD.”

That’s just what he knew! As he listed them, I thought, ‘Yeah! I do have every right to be down!

I looked at him and then answered. “I do have a lot of reasons to be down right now, but I still feel joyful.”

I still feel joyful. In spite of my disappointment today, there is joy. There is joy because I have hope. I have hope because I believe God works all things together for good. I believe that He works all things together for good because I know that He loves me and knows what is best for me.

For some reason, I didn’t make my flight. For some reason God had other plans. I may find out what they are or I may not. Regardless, I believe that whatever the reason, it is the best.

Excuse me while I answer my phone…

Well, I have to go – my son was just in an accident.

I’m back…

He’s okay. An older woman hit his car. Hmmm… I wonder if that’s one of God’s reasons.

Nehemiah 8:10 says, “Do not grieve, for the joy of the Lord is your strength.

It’s true. I choose not to grieve over my disappointment because He is my joy and my strength and I hope that this day you find joy and strength in Him, as well.

Live Today

raised hands

I received an email from someone concerned that they may have the beginnings of Parkinson’s Disease. I have met others who have PD, but not someone in the throws of wondering if the symptoms that they are experiencing are, in fact, PD.

I can’t stop thinking about him. I think because it takes me back to my diagnosis, to my days of wondering what was going on. I can relate so well and, I can understand, all too well.

He is scared, wondering if he does have PD, and I am able to look back and see myself where he is now – scared, uncertain, and desperate. I can now see that, even though the future is still uncertain, I have been blessed with a wonderful doctor, the support of friends and family and more than anything, been given the opportunity to encourage and come alongside of others. I was not able to see those things then, the fear taking away everything else that was in my future and leaving a sense of hopelessness.

Isn’t the future, in reality, uncertain for each of us, whether we have been diagnosed with a disease or not? None of us knows how the end will turn out or when will be the last time we will tuck our babies in bed at night.

I am reminded of one of my favorite quotes:

“Dance as if no one were watching,
sing as if no one were listing,
and live everyday as if it were to be your last.”

That is how I want to live each day, whether I am fighting with PD or making peace with it. I want to dance without reserve, even if I stumble. I want to sing at the top of my lungs, even if others think I’m still whispering. And, I want live each day as if it is my last opportunity for anything, even if I am given a tomorrow.

It is a hard thing to do – to live like that. There are so many distractions, so many reminders that we are not ‘whole’. With distractions that plunge their way into our daily paths and constant reminders from our bodies that struggle against their own desire to be free from disease, we can, however, choose to have the attitude of living life to its fullest and enjoying the journey, even if it’s not the one we would have chosen. It always seems better to wear a face of hope than that of despair.

I would like to encourage all of you, whether you have been dealing with a disease of any kind, whether you have just been diagnosed, or perhaps you are wondering if the symptoms that have just started are anything worth fretting over – live this day as if it were your last – dance and sing. Do it without reserve. I dare you. Oh, and don’t forget to tell someone you love them – at least once.

Hiding

We try to hide from the world when we feel inadequate, abnormal and different. It’s a natural defense but can be destructive. Hiding ourselves away from the world can be natural in order to defend ourselves from others and their inquisitive, lack of understanding minds.

I was talking to my neighbor one day and my hand began to shake quite a bit and she asked, “What’s the matter with you? Am I making you that nervous?”

She found out I had Parkinson’s that day and she doesn’t know quite how to deal with ‘it’.

Illnesses are funny things. We want to hide because of how they can make us feel. Others want to hide from us because of how our abnormalities can make them feel. It can be uncomfortable for both parties. People don’t know how to approach someone with a handicap or an illness – they don’t know what to say and they don’t know how to respond.

May I suggest, next time you find yourself in a situation like that described above, be the first to break the ice. Be the first to take off the mask you may be hiding behind – that of fear and rejection or feeling abnormal. Others will be more comfortable when they see you are.

I’ll Have It His Way

I went to see a movie the other night with my daughter. Now, don’t laugh…

High School Musical 3 – Senior Year.

I haven’t watched the first two movies, but have heard from various sources that they were commendable. So, as I’m a sucker for musicals and while my husband and son went to the shoot ‘em up production in the theater adjacent to us, we went in to see ours.

We were the only people in there and had a great time. The only problem with these types of movies though… The repressed desire to sing and to dance is reawakened (much to my family’s despair). I left the theater singing The Boys are Back. I added a few little moves to the words that I could remember (which were few) and a couple dance moves. Yes, the attendant behind the snack bar laughed. And then in one of my graceful moves, I threw out my back. The pain seared through the entire middle. Fortunately, it didn’t last too long.

What was unfortunate, however, was facing my PD once again. Knowing that no matter what my heart desires, this PD – this thief – will determine whether I can do it or not. It won’t be my decision to make.

But…

If I had my way, I’d join a dance class and learn to waltz.

If I had my way, I’d go skiing one more time.

If I had my way, I’d play softball and hit a homerun and run all the bases myself.

If I had my way, I’d put my own socks and shoes on.

If I had my way, I’d insist that I can do it myself.

If I had my way, I’d do many things.

Things that I used to be able to do when I had my way.

But today is different. I can’t have my way. PD has seen to that.

I’ve had to learn to receive and not always be able to give.

I’ve had to learn dancing will have to wait, at least for now.

I’ve had to learn skiing is not for me.

I’ve had to learn others are willing to do what I cannot do.

I’ve learned, unlike Frank Sinatra, that I don’t always have to have or do it my way.

And that’s okay, because I know that for some reason, this path I am on is His way and that’s the only direction I want to go. I also know that when I reach the destiny He has set before me, He will be waiting on the dance floor of heaven, just for me.

Turkey, Ham, Roast Beef, or Cheerios?

It’s Thanksgiving. Another day we are granted, to legally give thanks. So, what are you thankful for this year?

A tradition always held at the dinnertime at my in-laws, was to take turns around the table saying what you were thankful for the past year. Have you ever noticed that when you take the time to think about what there is to be thankful about, one thing can lead to another and there wouldn’t be enough time in the day to list it all.

So, we’d love to hear what you’re thankful for. I’ll start.

I am thankful for…

the love of a God who loves me so much that He’ll never give up on me.

A husband that stays by my side through thick and thin.

Three wonderful kids who encourage and support me, endlessly.

The most beautiful granddaughter ever. Really, she is.

A home.

My daily bread and sometimes dessert too.

Friends.

And, this day. To reflect God’s goodness in my life. Without Him, I would be absolutely nothing. Like a worm even, scavenging through the earth, digging to China or who knows where, without an obvious reason/purpose.

But I have a purpose. To love God and worship Him alone. To love people. The group 4Him once sang a song with those words, titling it The Center of the Mark. And that is my desire. To hit the center of the mark.

Fact or Feeling?

I used to wear my heart on my sleeve for all to see… and comment on. Not that I wanted to. Who am I kidding? I still wear my heart on my sleeve for all to see… and comment on. Not that I want to.

It is a curse, one might say, to be so vulnerable. It is a curse in the sense that you want to keep the feelings that are so deeply felt, hidden away so no one can see. Really, so they can’t mock or tease or condemn. At least it feels that way sometimes.

It is a curse in the sense that you want to keep those feelings that are so deeply felt, hidden so you don’t have to deal with them. Feelings of loss. Feelings of isolation. Feelings of inadequacy. Feelings you have when you have what others don’t. And you want to keep them hidden because they don’t, they won’t, they can’t understand.

Mulitple Schlerosis.

Lupus.

Pancreatic Cancer.

Alzheimers.

Breast Cancer.

Alzheimers.

Lou Gehrig’s Disease.

Prostate Cancer.

Crone’s Disease.

Unless you’ve got it, or a disease like it, you won’t, you don’t, you can’t get it. You can’t understand. Not that you don’t want to, but you just can’t. Not fully, anyhow.

You can sympathize, you can pity, you can encourage and support, but you can’t understand. And so, some try to empathize, rationalize, apologize and humorize the situation. But sometimes, it’s not funny, there’s no rational reason one awakes day after day to face their foe in the mirror, nor is it anyone’s fault that they or a loved one suffers with a disease.

I guess I’ve felt a bit frustrated of late, feeling as if some people in my life ‘don’t get it’. I get to the point that I don’t want to even mention PD because it is viewed as an excuse for pain, stiffness, memory loss, or any other ailment I might be experiencing at the time. Sometimes it seems that the fact of my disease, being ever present in my body, has disappeared from sight to the outer world. Yet, I know it is there as it hides within and can definitely be felt moment by moment.

As recipients of a disease or illness, we try when our bodies and our energy levels permit, to do what we are able – garden, write, work on cars, play games, socialize… We have a new vision for the short time we are allotted here on earth and strive to make the most of it. There are some days we feel we could climb a mountain ( a little one) and there are other days when we know we can’t even walk to the base of a hill. It may even hurt to glance upward to look into the sky. These are the days when sometimes others watch us (me) and I wonder if they think PD can’t be so bad. Look at her! She’s digging up flowers! No one with a disability would have that much energy or strength.

To be fair, I often don’t, just as others I know with PD don’t. We push ourselves in the tasks we yearn to function in and finish because it feels good to be used, to be useful, to work, to move. Yes, we push even in the pain because, at least for me, the pain says I’m alive, I can still do it – today. And yes, it also cautions me to take it a little easier, but not so easy that all that is left is to sit and watch life instead of participate in it.

I may wish to hide what’s going on inside, but I’ve never been good at it. I wear a feeling of loss at times, because the fact is, I’ve lost something – control. And I wear a feeling of isolation – a feeling of being alone in the fight. I wear inadequacy by feeling I can’t do, can’t offer what I used to. Everything’s just a little harder to accomplish. But as hard as things may be at times by dealing with something others can’t understand, people mean well. They intentions are honorable and they are trying to deal with this intruder from a different angle: it’s taken a part of the one they love or it’s trying to.

So I guess I’m thankful that sometimes I wear my heart on my sleeve because sometimes I don’t want to give this monster any more attention and talk about it. But sometimes I need to and that’s when someone asks how it’s going and if my answer is a little less than accurate, they glance at my heart laying there bare for all to see and re-examine my answer.

You sure? they ask after receiving a less than convincing ‘Okay’ response.

Fine. You’ve got me. I’ve got PD and no, I’m not okay. Today I just really need a friend.

I Wish

I wish I could form words without someone thinking I was drunk

like saying, “Yes I do think” instead of “Yes I did thunk”.

I wish I could carry a glass with cold ice without shaking

and rattling so loud it sounded like a martini I was making.

I wish I could speak loudly so others didn’t say “Quit muttering”

I wish I could snap back and say, “Well then you quit your stuttering!”

I wish I could walk without dragging my feet

and stay in step with others instead of always feeling beat.

I wish I could not take pills to make me stand straight

oh my gosh – now that would be GREAT!

I wish I could walk without dragging my feet

and almost trip when others I meet

I wish I could hold things without fear of them dropping

but am thankful I still can walk without always stopping

I wish the pain in my neck and back would disappear

But the stiffness just gets worse is what I hear

I wish brain surgery wasn’t in the future for me

but what is – is and what must be will be

I wish things were different for me

I wish the same for others with this thing called PD

but they’re not and that’s okay

for I’ve learned to be content anyway

I’ve got friends who live near and far

friends who know just who they are

some who understand and some that just care

walking with them I have learned to bear

oh how I thank God for all of it, you see

For without PD these things would not be

the friends, their concern, the many lessons learned

even when my heart’s been heavy, my hope has turned

to the One who’s never left me to walk unsteady

the One who stands faithful, true, protective and ready

oh my Jesus, how can I say how great You are

without tears falling from my face, captured in your jar

tears of fear, tears of pain

tears of weakness turning to strength in You I gain

how can I live one moment of my life

whether filled with smiles or filled with strife

I have seen purposes and plans

that could only have come through Your hands.

so I just want to say thank You

honor, praise and glory to You alone are due

I want to shout Great are You Lord Almighty

for loving, protecting, and carrying me.

**A Book of Poems and A Bright Light

I had an epiphany the other night as I chatted with a fellow PD’er online.

Paul Martin… You have to read this guy’s poems. He will be our featured MVP in the next couple of months but for now, I’ll share a little of what I know about him.

He has Parkinson’s Disease.

He is very transparent.

He adores his kids.

He refuses to give up.

To combat what was going on inside his head (in more ways than one), he wrote poems. While we chatted, for some reason a humongous thought came to me.

Ever since I can remember, I have loved to write. I wrote all the papers for my classroom that I taught when I was eight years old. I wrote poems and short stories in my free time as a teenager. I took creative writing classes in college. I kept diaries for my kids as they grew up (or tried to) and kept several journals of my life throughout the years. I started seriously writing again when my kids weren’t putting their fingers in the light sockets anymore, in between baseball and softball games, basketball and volleyball games, football and more.

It was sporadic at times and irregular. I put it on the back burner more often than not, due to other things that always appeared more important.

Then as I was ‘listening’ to Paul as he spoke through his poems, I thought to myself, “If for no other reason, God allowed this guy to have PD to touch the hearts and lives of others with his words in a heart-wrenching way. You cannot, whether a PD’er or not, walk away unmoved.

As I read, I felt as if God was trying to get through to me. And then I got it when I was chatting with him. I’m not even sure what specifically turned on the light, but it was bright.

Without having been the recipient of this disease, I might be finding things to do (and I do still) that keep me from writing. Having PD has brought me back to what I have loved doing all my life. Without it, I might still be cutting out little useless pumpkins from scraps of pine. Not that they weren’t cute, useless pumpkins.

Sometimes (okay, often) God has to knock me upside of the head to get my attention. Sometimes He has to hit me hard. Like hitting me with YOPD. Yep, that was a hard hit. However, it was a good hit because now I am not only extremely focused (as much as someone with PD can be), but I have a tremendous purpose and that is, to encourage others through this journey God has allowed.

It is not a curse. It is a blessing and truly, I have been blessed in the journey.