Taking Care of You

I attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.

One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.

A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.

If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.

How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you be seeking out a doctor’s care? A support group? Because you matter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.

Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another.

If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice.

If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit.

Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk.

Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Let them remind you of the truth – you  matter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”

Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you.

And don’t forget to take your happy pills.

If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”

Chad Sugg, Monsters Under Your Head

Originally published 12/2016

The Value of Brokenness

you
a fragile
piece
of pottery
knocked over
falling to the floor
that rises to meet you

you pull yourself up
another crack to tend to
another piece of pride to mend

you see the mess
you think
you’ve become
broken pieces
irreparable

you feel
every scab
every scar
every wound

He sees something
different
He sees something
beautiful
in every crack
in every crevice
in every break

you don’t become useless
because you have been broken
you become wiser,
you become stronger,
you become more beautiful

the cracks
that bring a humility
that draw others in
as they witness
a new beauty unfolding

imperfections
are being perfected
weaknesses
are becoming a holy strength
experiences
are bringing a godly wisdom

In Japan they call it Kintsugi
in essence –
the art of bringing more value
to something broken

God calls it
grace

faithful
enduring
steadfast

Grace

In the Midst of Fear and Grief

Biographies of bold disciples begin with chapters of honest terror. Fear of death. Fear of failure. Fear of loneliness. Fear of a wasted life. Fear of failing to know God.

“Faith begins when you see God on the mountain and you are in the valley and you know that you’re too weak to make the climb. You see what you need… you see what you have… and what you have isn’t enough… Faith that begins with fear will end up nearer the Father.” ~Max Lucado

Though we still may not have lost a loved one, grief is still possible to experience. To experience grief, you need not be standing at the foot of a closed casket or next to a hospital bed watching for the next breath of a loved one to be the last. Grief can begin before death. Grief can sweep over you for things lost in life – friendships, quality of life, loss of family relationships, etc.

C.S. Lewis said, “No one ever told me that grief felt so like fear… the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing.”

The comfort I gain from the quote above is that although I know fear does not come from the Father, it can lead us deeper into Him. When you ask what you will do without your best friend, a child, or a parent that has just died, the loss of your quality of life, a wayward child – who will you turn to for encouragement, support, and comfort, it is as if you have just opened the door to the arms of your heavenly Father. It is as if you hear Him whisper, “I want to be all of that for you and more.”

Unfortunately, I have run to the wrong places for comfort before running to the arms of God. I have sought after best friends instead of seeking a greater intimacy with the lover of my soul. I have listened to the counsel of others before praying for guidance from the One who holds my future in His hands. I have sought peace from other means before praying to the God of all comfort.

Yes, God uses others in our lives to help us to grow, but they cannot grow us nor can they give us peace. They cannot fill the hole that only He can and wants to fill. Those people in our lives who we trust with our love, our fears, our hearts – they are needful, just as we are. They are vessels God works through. But, they are not God.

When I hear the word ‘fear’, I think of Psalm 23. “Even though I walk through the valley of the shadow of death (surgeries, chronic diseases, heart problems, dying marriages, lost children), we do not have to fear anything, for our God is with us. He will never leave us. His rod and His staff, tools used for protection, bring comfort and peace to us.

Fear immobilizes us. Faith gives us courage. And courage happens not because of the absence of fear but because of it. Courage, even though standing with heartache and weeping tears of what can feel like unending sorrow says, “Even though the valley of death surrounds me, I will not fear, because You, my God of all comfort, are here for me.”

We must believe that is true, even when we don’t feel like it is true. Faith and courage do not rest on what or how we feel but on what we believe and know to be true. And one thing I know to be true…

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is His faithfulness. ~Lamentations 3:22-23

Even in the midst of fear.