Does My Life Matter?

Green_Dogwood.JPGSometimes I don’t know if it’s me or if it’s me with Parkinson’s that causes me to dwell on death at times. I sometimes think ‘today is the day it will end.’ The day it will all be over.

Is it just me? Is it the disease? Is it me with the disease?

I watch a video of a man who, as he pans and photographs the Hawaiian coast with his drone, asks the question over and over, “Does your life matter?” I sit and watch as the drone flies over alcoves of paradise and his constant question causes me to wonder, does my life matter? Has my life mattered?

The drone skims the water, rushing upon every hue of green that is scattered upon the island foliage.

Does my life matter? The thought whispers into my brain again. Has it mattered at all?

Somehow, I ran across Davis Phinney’s site. Phinney was an Olympic Bronze Medalist in the 1984 Olympic games. Phinney has Parkinson’s disease. His ‘slogan’ for his foundation is, ‘Live Well Today’.

Live well today. TODAY stands out to me like a flashing light. It’s not a question of if my life has mattered. All that matters is today. Yes, I want my life to have mattered. I want to live today so that my life didn’t just take up space, but made a difference. I can live with the fact that life is short and this may very well be my last day, but I find it difficult to live knowing that someday I will stand before my maker, aware of what I needed to do or could have done to make a difference but neglected to or chose not to do it.

It is often easy for me to get caught up in a ‘do good’ mentality, thinking all the good I do will please God, but there is no merit that can satisfy God. It is not works that save me, but grace. I matter not because of what I have done or will do, but only because of what has already been done by Christ on the cross.

So, yes, my life matters but I need to remember that it good things, good works, good deeds – they’re all good, but they are worth nothing without Christ.

Songs In the Night

It’s only natural to wonder why things happen the way they do. Some things can leave you in a state of confusion. Some things can leave you dumbfounded. You may not understand. You are lost in a sea of torment and wonder if you’ll ever find the way out.

All of us have experienced pain of all sorts. Pain of a broken pain. Of childbirth. Of a bee sting. But physical pain doesn’t hold a candle to the mental and emotional pain some of us find ourselves experiencing. The pain of divorce. The pain of watching someone you love suffer. The pain of a wayward child.

There is one pain I have never experienced and I pray that I will never have to. A pain that I can only imagine is so great, only the tender fingers of God can wipe the tears it produces. The pain of losing a child.

A year ago my son and daughter in-law moved from Oregon, where my husband and I live, back to Idaho in anticipation of a better job opportunity. It was a good move – for them. For me? I has spend the prior five and a half years watching my granddaughter every day, all day long and the last six months watching and caring for her little brother, my grandson. When my son and his wife moved, along with mygrandchildren, I truly meant it when I told them they had my blessing. What I wasn’t ready for was what it felt like to have them gone. I literally felt as if my heart had been torn out.

I have a dear friend who had her heart torn out almost two years ago this next February when her daughter was suddenly, unexpectedly, tragically killed. Many of you may have heard. Many most likely know whom I speak of.

Judy Hensley. Mother of Carol Michelle Hensley Singletary.

I have just finished reading Judy’s book, a memoir of sorts, of Carol’s life. A tribute to her spirit. The fire inside her. But as I read it, it became more than that. Throughout this past year, the times I have spoken with Judy, my heartbreak over my loss seemed menial. After all, my kids and grandkids merely moved away. They weren’t taken without my consent. I can visit them, talk to them on the phone, see them through Facetime. Judy can’t. Carol’s gone from this world – a hard fact Judy can’t change.

During our late night or wee hours of the morning chats, there have been tears. They have been prayers. There has been searching. One thing I remember thinking and may have said out loud, is that God is going to use this amazing woman for his glory. Through the pain, the searching for answers, the tears – the grief – he is going to use this woman.

He’s going to bring about something beautiful…

Life is full of messy. Messy relationships. Messy jobs. Messy diseases. Most of which we have no control over, but because sin is a part of life and always has been, life is and always has been messy. But I continue to learn that there is a reason for everything. I may not ever know what the reason is, but there is one. If you believer in an almighty, sovereign, omniscient God (I do), then you most likely believe that thought we may not understand, God allows things to happen. And sometimes those things are not welcome.

Like losing a child. No matter how old.

But, because life is continually messy – and has been since the Adam and Eve episode – there will always exist someone who has gone before us and ‘been there, done that’. Someone who never signed up for messy but was thrust into the heart of it and in the process had their heart torn apart.

Someone like Judy.

There is beauty in the broken and I have not seen it more evident than in her life. Broken, crushed in spirit – wondering and asking why – still she sings.

In her book about Carol, Judy shares a conversation she had with a friend who has gone through a similar experience. They reference the biblical account of when Paul and Silas are imprisoned and how at the midnight hour the two men are praying and singing praises to God. Judy and her friend talk about the verse that says, “…and the prisoners heard them.”

Somehow, the prisoners heard them… they were not simply singing like we might do in the shower. They were not singing a bar or two to themselves. For the other prisoners to hear, they had to have been singing with spirit (quite literally!). I am in awe not at the fact that the prisoners heard them, but that they were singing praises and most likely – singing them loudly.

In her own strength (and she will tell you this herself) Judy has not survived but it has been only by the merciful compassion of a heavenly Father working through His presence in her personally or through the outreach of others toward her. And it’s because of His relentless mercy that she is learning to sing in the night hours. The times that are so incredibly dark and the sun seems it will never shine again. You know – the times when you feel imprisoned to the pain of this world and it feels as if it will never let up. Songs in the night are miracles of praise because when you least feel like singing is when you need to do it most.

Sometimes having a chronic illness leaves you feeling imprisoned, broken, and grief-stricken in its own messy way. But there have been those who have ‘been there, done that’ and are a bit further ahead on the journey and will come alongside of us in order to encourage and teach us how to learn to sing in the dark of the night.

Judy has been nothing short of a illuminating light in the midst of a horrendous storm. She has been proof that while we may never understand why God allows certain things to come about as He does, He does not nor will not abandon His children in their time of need. She is proof that praise is possible in the darkest of times because the light that had already been shining in her life is even brighter now.

If you want to be uplifted, encouraged, and given a renewed sense of hope in a great God,, her book, Carol’s Smile, is available through Amazon or Barnes and Noble stores. And no, she didn’t pay me to write this. She’s sending me Oreos instead.

When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God, the Holy One of Israel, your Savior. …you are precious to me. You are honored, and I love you. Do not be afraid, for I am with you.” Isaiah 43:1-5

Life or Death: Which Do You Choose?

I’m reading an article on PD. I’m not sure how I came upon it other than I had typed in Parkinson’s Disease and walking. Go figure. Anyhow, by the second paragraph I had decided I didn’t much care for the article.

Here are the first two paragraphs:
“Parkinson’s Disease (PD), a devastating illness, occurs in one of every 100 people over 65.
“It is a slowly progressing disease of the nervous system that results in progressive destruction of brain cells (neurons) in an area of the brain called the substantia nigra. Death occurs usually as a result of secondary complications such as infection.”

This article was definitely not written by a PD patient nor by one, it seems, who is associated in any way with PD (and I confirmed this fact by looking up the author, who happens to be a writer that contributes to many and widely varied freelance opportunities on the web).

Now, the reason I say the author does not suffer from PD is because they’d know better than to bring up the issue of death within the first two paragraphs (personal opinion). PD patients are more understanding toward those who live with this disease. We don’t talk about death until we are back to the car after walking through an entire outdoor art show, stopping every 20-30 feet and struggle to get in the car because we’re so stiff. And only then it is only a passing remark that mimics something like, “Ugh, I’m dyin’ here!” as we pull our leg inside.

PD patients can be sensitive to the word death. Everyone else is busy making funeral arrangements for us in their free thoughts as they tell us to “Slow down, take it easy, let someone else get that for you.” Thank you for your kindness but, if we can do it, we want to do it ourselves and if we can’t do it or don’t want to, then the kindness of someone else is most great appreciated. Please don’t write us off as useful or productive. We want to keep going to the very end, even if it doesn’t look like much.

We can move. Not as well as we may have two years ago, but we can move. I refuse to sit in a chair and watch my life pass when I can go outside and cut flowers. I can’t work days outside as long as last year, but I can still enjoy my garden.

This is all to say that if death is in the top five words you use to describe PD, please consider a new Thesaurus and find a new synonym or grab a new dictionary for a new definition. Here’s a few I’ve found (at least in my books!):

Parkinson’s Disease: An opportunity to encourage others who suffer and/or struggle in life by way of personal experience, warranting personal understanding.
A struggle in life that allows for a new focus on the things that matter most.
A situation where a person is forced to stop and smell the roses because they are forced to walk more slowly due to lack of muscle movement. This allows for the opportunity to literally, stop more often and take notice of nature, people. Life itself.

As a PD patient, I know that there are tough times. You’re stiff. It hurts to move. It hurts to sit. It hurts to turn over in bed. It’s hard to turn over in bed. You shake. Sometimes constantly because of tremors. Sometimes you wish you could hide. No one can hear you and when you’re asked to repeat what you said, you can’t remember what you did say. Swallowing can be difficult. Your moods can be dark, not because life seems depressing, but for reasons you can’t explain. You trip. You fall. You drool. Writing becomes unreadable.

Shall I go on?

My point is this: I know personally what PD is like, but I refuse to look at it as a death sentence. As for the author’s first statement in the quote above, “Parkinson’s Disease (PD), a devastating illness, occurs in one of every 100 people over 65”, her statement of PD being a devastating illness is correct. She is correct. It can be devastating. What she didn’t say is that, while it occurs in more than one of every 100 people over 65, there’s a whole group of us that developed this disease long before the age of 65. I’ve chatted with a few people who are in their early thirties, like myself.

I don’t mean to sound as if I am picking apart this author’s report and really I am not. I would just like to see articles such as this one, written with a bit more accuracy or at least, some consideration for those of us who live with the disease written about and don’t intend on giving up any time soon.