Grieving can and often does involve suffering, sorrow, sadness, hurt, depression, a feeling of affliction, and more. Grief is most commonly related to and thereby put into a category of death and dying. However, grief covers so much more than our expression over the loss of a loved one.
I was reading a verse from Nehemiah 8:10 which says, “Do not grieve, for the joy of the Lord is your strength.“Grieving can be an every day part of life for someone with a chronic illness like Parkinson’s disease. The first occasion to experience grief is upon diagnosis. You realize that from that moment on, nothing will ever be the same. There was no physical death, but eventually you realize that life from that day forward will be looked upon differently. Some days will be looked upon with grief in the form of sadness and sorrow while others will be met with smiles and laughter. Our path will not have necessarily changed, but we will face it with different emotions.
People who live with a chronic illness can be easily upset with life if they feel they’ve been dealt a hand they don’t deserve or refuse to accept. This is a form of grieving in the way of anger and of asking why. Why me? Why this? Why now? (As pondered in the justified mind of a Young/Early Onset Parkinson’s patient.) The why’s of life can leave a person grief-stricken, as they can be hard to make much sense out of and/or hard to understand, if not impossible. This can often lead to a deep sadness or depression and we’ve learned that depression is one part of the whole picture that patients often have to deal with, (It is wise to seek treatment if you are in this stage of grief.) You may be waiting for a good day to come and, if you’re fighting depression along with all the other challenges PD has to offer, that good day may not come.
Affliction comes in several different ways through Parkinson’s disease. Pain, tremors, lack of balance, difficulty swallowing – the list goes on and on. Each day we encounter different ‘tests’ this disease seems to constantly give. Will you lost your balance and actually fall this time? Will the tremors cause you to withdraw from the social activity you scheduled for the day? Will the pain rob you of doing what you love? Will going out to lunch embarrass you should you begin one your choking spells? The list of afflictions doesn’t end there. We can feel slightly pricked or punched hard in the gut, depending on the severity of the test. It’s a state of misery that leaves you feeling helpless, sometimes hopeless and hopeless is such a dark place to be.
There is hope. I started this out with a verse that I had read today. ‘Do not grieve, for the joy of the Lord is your strength.’ It’s not always easy to not settle in with grief as our companion. Life as we once knew it has changed and some days have been replaced with deep sorrow over what we have lost or may lose. Anticipation has been replaced with anxiousness and fear. Fear of the ‘what ifs’. Borrowing trouble from tomorrow. That’s what the’what-ifs’ are made of. Tomorrow’s un-guaranteed trouble.
Instead of what-iffing ourselves into depression and sorrow, let’s learn to allow the joy that comes from the Lord to be our strength. Let’s replace sadness with hope, sorrow with thanksgiving, grief in its entirety with trust. His joy will build us up through this trial of life called Parkinson’s disease and keep us from falling into the abyss. And joy is so much better, don’t you think?
Awhile a back, the song “God Is Good” filled the airwaves of Christian radio stations across the country.
God is good, all the time. Through the darkest night His light will shine.
If you’re walking through the valley and there are shadows all around, Do not fear, for He will guide you – He will keep you safe and sound.
He has promised to never leave you, Nor forsake you, and His Word is true.
The song was popular and became a regular Sunday morning praise song in church gathering nationwide. Why? It restored hope to those hopeless from being overshadowed by the past week’s of no income, no job, a wayward child, a divorce, unwanted news of a disease.
It restored focus to those who walked into church confused and lost, reminding them they don’t walk this path alone. It restored hope to those who felt they wouldn’t make it another day – physically, mentally, spiritually, and/or emotionally, by reassuring them they are in the care of the Almighty.
Sometimes we are the ones walking in the valleys of darkness. We seem to stumble and fall with every unstable step. We feel lost, alone, frightened, desperate. (Where’s that Lexapro?…) That is said in jest, but you know the feeling. We fear the unknown. We feel the shadows will consume us or – they are consuming us.
God is good.
All the time.
This isn’t His fault – this mess of a world we live in. His desire was to provide goodness. We blew it when that red, juicy apple was dangled in front of our face and we looked to the left and then we looked to the right and then we convinced ourselves God wasn’t watching and He wouldn’t know if we just took one little nibble. We took that bite and the whole world, as God intended it to be, took a 180 degree turn.
It wasn’t His fault that a refugee camp in South Sudan was bombed by the very ones these refugees are desperately trying to flee…
“A few days ago I visited a refugee camp in South Sudan, where Samaritan’s Purse is helping care for some 23,000 refugees who have fled the atrocities of the government of Sudan. The camp has been a safe haven for these suffering people. But Thursday, the violence followed them when the camp was bombed by the very government they have been fleeing.
“Four bombs were dropped. Praise God, we have confirmed that all of our staff are safe and accounted for, and as of now there are no reports of people injured on the ground.
“These people are in need of immediate prayer. Please pray for safety for the refugees, and for our staff. Pray for peace to come to this troubled region. Most of all, please pray that the people we are helping will find lasting hope in Jesus Christ.” ~Franklin Gharam, President of Samaritam’s Purse.
It wasn’t His fault that a wife will no longer be able to tell her husband goodnight…
“…The night before the burial of her husband, 2nd Lt. James Cathey of the United States Marine Corps, killed in Iraq, Katherine Cathey refused to leave the casket, asking to sleep next to his body for the last time. The Marines made a bed for her, tucking in the sheets below the flag. Before she fell asleep, she opened her laptop computer and played songs that reminded her of “Cat”, andoneof the Marinesaskedifshe wanted themtocontinuestandingwatchassheslept.
“I think it would be kind of nice if you kept doing it” she said. “I think that’s what he would have wanted”.
Dipesh Gohil, who shared this story says, “Not sure what is more honorable: being married to this faithful wife to the end or the Marine standing next to the casket watching over them both.”
It is not God’s fault that I have Parkinson’s disease.
The world was a pretty nice place until that red, juicy apple looked better than the world we lived in at the very onset of time. And at that point – the point at which we inserted our white teeth into the juicy, raw flesh of sin – we became people with our own agenda. People with a free will that demonstrated – if we wanted things our way, we were going to have things our way. And God let it be so. And we called it ‘free will’. But we didn’t realize the price tag of that free will.
God is not mean. It is not His character that we should squirm or suffer. He just says, “I will not force you to love Me. It is a choice. However, you ate of that nice red, juicy apple (sin) that I told you must leave on the tree and there are consequences to disobedience.”
Unfortunately, while we may not be the one doing the disobeying, we can become a part of other people’s circles of poor life choices, ultimately being affected by their consequences.
Like James and Katherine Cathey. Like the bombings in the refugee camps in South Sudan. Like having a chronic illness. God did not will it.
“But,” you say, “He allowed it.”
Yes. I believe – for two reasons.
First, there was that nice, big, red, juicy apple. It was enticing. Alluring. An exciting possibility to become as knowledgeable as God. It was attractive, irresistable – tempting. And we took the bait. From that moment on, life as it was created to be, forever changed. With the presence of sin, now death entered into the story. Where there was once purity, there was now shame. Where once there was freedom, we now felt bondage. Where there was once light, there was now darkness. Where there was once fullness, now there was hunger. Where there was once good health, sickness now entered into the picture.
But God remained. And He remained aithful and true. He never changed. He now waited to see what we would choose. Him or this world. We would not be forced to love Him. We had a choice – free will.
Second, He may not cause certain things to happen but yes, He has the power to stop it or He allows it to be. But, ask yourself – If God stopped every struggle, every pain, every heartache, every inconvience, every pimple – where would we be? Blemish free perhaps, but ignorant, childish, selfish, while still in a world full of sin. There would be no experience, no wisdom, no maturity, no mental, emotional, or spiritual growth. We would remain as infants.
Selfishness would abound and become the norm. Pride, self, and ego would rule (more than it does now). Chaos would erupt. Constantly. Daily. Everywhere. Kind of sounds like the consequences of our choices as a people are catching up with us quickly.
Without the dark times, we cannot appreciate the light. Without pain and sorrow, we cannot appreciate joy and happiness. Without the storms, we could never imagine just how good the sunshine can be.
I have Parkinson’s disease. My husband is still unemployed. My daughter lives too far away. Relationships in my life are facing life-changing situations, some by their own merit, others by no choice of their own.
God is good.
All the time.
I met Sara several years ago, and when meeting her, felt as if I had known her forever. There’s an unspoken bond between people with chronic illness and pain.
Sara was diagnosed with Ankylosing Spondylitis. A disease much like arthiritis, but in some ways, nothing like arthritis. It is progressive and debilitating. It does not favor. It can be ruthless. There is no cure. Sound familiar?
I am going to leave you with portions of her story.
If you are struggling, I believe you will be encouraged. Hopefully you will see God’s goodness between the lines, amidst the struggle of her disease. And, hopefully, you will find hope, because God is good. All the time.
“When I stopped dreaming I could run, I knew for sure my life had changed permanently. The disease I have is called Ankylosing Spondylitis and it’s different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties and begins by attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine.
“The “goal” of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together. Until recently, most doctors believed that AS was a man’s disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.
“For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won’t go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, “Oh, that silly little girl is overreacting.” I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like “The boyfriend is fine but I’m finding you very stressful.” But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, “No. I’m not sad, I’m in pain.” And sadly, that doesn’t always get you very far.
“Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn’t know went together, turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with arthritis. Ahh, the good old days.
“Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected… and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I’m sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.
“My life now, to put it bluntly, is painful. If I’m having a good day it means my pain is moderately high at best, and I’ve showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen’s for short little errands, but it’s been a long time since that was an easy trip. I don’t count on that I will be able to do that again… it’s not in my reality right now.
“And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can’t imagine I ever ran track or jumped over a hurdle without it being painful. I don’t remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don’t long as much for something I can’t imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.
“Other than the crutches and the wincing in pain thing, when I’m not on steroids I look pretty average and healthy. And I don’t want to look otherwise. I will write about this as part of my life, but I’m not going to lament endlessly on this blog about my daily struggles and pains and complications. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick… and as I often tell my mother, my body is brutal but I’m ok.
“My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I’ve talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted. And if you’re taking a moment to read this blog, I’m not taking that for granted either. Thanks.”
The Lord is our light, guiding us on this journey of life with… Parkinson’s disease. Or maybe for you, it’s cancer. MS. Crone’s disease. Depression. Or, maybe an addiction. A habit you want to break but can’t seem to do it.
The Lord is your light. What do you fear? The Lord is your stronghold in this life – what are you afraid of?
When thoughts of giving up or giving in – when they come upon you in an effort to eat away at your peace and confidence in Him and attack you from every side, seeking to break your spirit and render you useless – they will be thwarted and cast away.
Though an onslaught of useless, hopeless thoughts try to make a place for themselves in your life – thoughts like, “What if this happens?” or “What if that happens?” – even at moments like that… we can be confident. Content. Comforted.
We can approach Him with confidence. We can come with faith as small as a mustard seed, in search of the greatest desires of our hearts. We can approach Him without fear. We can seek Him for eternal blessings. We can look to Him for comfort in knowing that we will dwell with Him for all our days. In the days filled with moments of sorrow and moments filled with joy. And yes, even in the moments through our sicknesses and diseases – in all those moments consumed with fear – He can be found. We can find Him in His glory and majesty, waiting to extend His blessings of that comfort and safety. We can find him waiting to shelter us under his wings of strength. Willing – wanting – to be our refuge. To be the One we run to. The One we confide in. The One we cling to.
He will hold us up when we cannot sustain ourselves. He gives us strength when we are weak, compassion and understanding when we feel our bodies are failing, a spirit to fight when faced with fear, and joy for our journey. When we find this sweet spot – this place of rest – we are able and find delight in glorifying Him alone.
We cry out, “Hear me, God! Hear me! I am crying out to you! Have compassion on me. Show me kindness, gentleness, grace. Answer me. Please!” We run and chase after Him, desiring Him and Him alone. We fear He is hiding. That He really doesn’t care. Have we angered Him? Is He turning away from us as He turned from Christ in that dark moment upon the cross? Is this our cross to bear and must we bear it alone? Are these the fears that inhabit that utter darkness of despair?
Again, we cry out.
“Lord, God, Father, Jesus, Holy Spirit… do not play this game of hide and seek. Do not turn me away. Forgive me Lord, discipline me, rebuke me – but do not leave me!”
All is still.
All is quiet.
Did we dare to demand of Almighty God like that?!?
David did. God still loved and listened. Even called him FRIEND. David was honest to the core. And so we may be, too.
So quietly and softly we say it.
We feel it.
We express it.
After our cry, “Do not leave me!”, despairingly yet honestly we add, “Like so many before. …like I have You.”
We sit there. Emptied of the fight. Oddly, weak but renewed with His grace. Strengthened with His peace. Humbled with His faithfulness. Restored with His truth.
As it washes over us – a love that knows no conditions, a mercy that knows no bounds – we sit there and in a whisper we plead, “Teach me to be still Lord, to walk in faith and trust you in for every single step. May I not waver because of my fears.
“Do not let my them defeat me. They seek to destroy my peace, my state of mind, the truth that You still care. You’ve always cared.”
We take a deep breath. From somewhere within, we feel a renewed confidence in Him. A faith restored. Trust takes over, and fear falters.
“I am confident Lord, that I will see your goodness here on this earth, in the land of those who are living and so I will wait. In my confidence – in trust and with faith – I will wait
“Because of you, I will be strong and have hope. I will have an unquenchable courage that trusts in a loving God who fights for me. I will hope for the best, and anticipate the better. I will depend on you to dissipate the darkness in my days and to revive and renew me when the lot of despair threatens to depress me. And, as I wait, I will wait in wonder, watching for your hand to work in me – watching for You to work for me. “
“I don’t even wanna breathe right now All I wanna do is close my eyes But I don’t wanna open them again Until I’m standing on the other side
I don’t even wanna be right now I don’t wanna think another thought And I don’t wanna feel this pain I feel And right now, pain is all I’ve got.”
It was a hard day.
I waved good-bye to my son, his wife, and my two grandchildren as they drove down the street, on their way to Northern Idaho to a new home, new jobs, a new life. Now instead of twelve minutes away, it was fifteen hours.
My two grandchildren, one five and the other – one year old. My two grandchildren, who I had watched almost since day one. Every day. All day.
I helped them learn to walk. Eat with a spoon. Drink from a cup.
I sat in that rocking chair over there, and rocked them to sleep. Sang to them hymns. Read to them about the pants with nobody inside of them. Held them when they were sick or well or when they just wanted to be held.
I sat at that table over there and played games with ‘Boo’, colored, painted, had tea parties.
And then one day, my son announced a new job opportunity and you can guess the rest and that’s why I stood outside one Sunday morning, waving good-bye to a car filled with precious ones.
And after they left, I went to the rose garden and everywhere I walked I heard Boo. I saw her chasing the blackbirds. And I could hear her excitement upon finally seeing the elusive jack rabbit we’ve been tracking for months – if she had been there.
And the next day, I worked in the garden and watered her garden – a garden filled with volunteer larkspur, bachelor buttons, poppies. She is so proud of her garden. I worked out there most all day. I worked out there until I couldn’t move. I worked out there so I didn’t have to think.
And Tuesday, yesterday, I still couldn’t move. I moved too much on Monday and paid for it on Tuesday. I had lost mobility and.. gained pain in its place. I sat on the couch and worked on my pictures and cried. My digital albums are filled with children’s smiles and I could almost hear the giggles behind those smiles.
And then there was Wednesday. At one point I felt like I had been locked in a blackened room – hopeless, lost, empty. And I wept. For something lost. And it felt as if my heart was literally breaking in two. The crack I could live with a week ago became a bottomless crevice. The strength that held me together a week ago had become jello.
And I wept.
God, how am I going to do this?, I whispered through tears I hadn’t spilled out so hard in so long.
My head told me those two little ones were not mine to hold onto. I was not even their parent. Can a Grammy love her little Grammy-grandchildren so very much?
Yes. Yes – she most definitely can.
As I sat on the bathroom floor, I cried some more and through the tears whispered, God, I lived for those kids.
They were my daily dose of laughter, love, smiles, hugs, joy. God used those two little ones to bless me over and above in so many ways I never deserved. I viewed them as my little disciples and we talked about God everywhere we went. In everything we did.
How I found the energy to do it every day, only God knows. I napped with John and napped when they went home. I fought through the pain within my body and refused to not hold my grandkids or change diapers even when I didn’t think I could stand it another minute.
My body was screaming to let go. My heart was screaming to hold on. My head was saying it was time. Time to listen to the body. The disease that strives to claim more ground with each passing day was doing its job. Time to let go.
It was the grace of God that intervened. But oh how it hurt. After all, I lived for those kids.
And then, I heard it. That still, small voice that you can hear when you’re sobbing uncontrollably because your not busy talking and making incessant, unneedful noise and chatter. The comforting, life-giving voice of God.
God, I lived for those kids, I had whispered through tears.
And before I could go on to the next thought of despair, He whispered back.
“Live for me.”
The uncontrollable sobbing became controlled. The tears dried up. A tiny ray of sunshine, a tiny grain of hope took hold deep inside my heart and the crevice began to close and return to a crack. A few more tears fell. Not from grief but because of grace. The grace of God. The trustworthy grace of a merciful God.
I don’t know what living for Him looks like in the days ahead with PD – His plans, His dreams for me – but as I live for Him, I will trust Him completely. I’ve been through too much in my lifetime to do anything less.
Like I said, Steven Curtis Chapman says it best…
I don’t wanna feel this pain I feel And right now, pain is all I’ve got. It feels like it’s all I’ve got, but I know it’s not No, I know You’re all I’ve got And I will trust You, I’ll trust You Trust You, God, I will Even when I don’t understand, even then I will say again You are my God, and I will trust You.
Trust You. I will trust You.
Even when I don’t understand the physical, emotional, or mental pain, I will trust Him.
There is a pair of yellow flip-flops on the front of a blue t-shirt. Below them it is written: “Life is good”.
Some days, life is
Other days, it can be so overwhelming.
Yet, from the good day to the days that are filled with feelings of despair and discouragement, emptiness and apathy, nothing has really changed. Nothing seems so different in our circumstances that should cause us to feel as if things have chnaged.
It’s all familiar, but the difference of only a day can bring a dark, haunting feeling that causes me to feel overwhelmed. Struggles that were present yesterday but gave no real cause for concern, today give way to distress.
There is a song entitled, “Here”, by Kate White and it speaks to my heart in so many ways.
Here, In this place, In this moment I will praise You.
And here, In this place, I will glorify Your name.
Here, without fear, I will climb into Your lap.
And here, bathed in tears, You embrace me as I am.
My life is overwhelming me. It’s hard to see the things You see. Your spirit comes to comfort me. I will praise You.
Here, in this moment, in this place, I am overwhelmed. My life is overwhelming me. It’s hard for me to see the things God sees. It’s hard for me to see the way God sees – how my disease will progress. If my friend will find a place of remission with her fast growing cancer. If my opportunities to see my grandkids will get fewer and farther between. If our income will be sufficient month to month. If we will be able to care for our parents the way they will need to be cared for when the time comes. If… when… how… where…
On days that are overwhelming, the list can seem endless.
Because I make it endless.
It’s quite easy to add to it when you’re in a state of mind that seems like everything is overwhelming you. One dark, discouraging thought after another.
But, it is here, in this moment, in this place, I will praise Him.
For here, in this place, I climb into His lap and bathed in tears, He embraces me as I am.
Whether faithless, concerned, overwhelmed, or whatever defines my feelings, my world.
His spirit comforts me. And the darkness dissipates into light. And the light washes over me in the color of warm. And the warm soothes my soul so that I know that once again, He is God. He is here, in this moment, in this place.
The very least my heart can do is to praise Him. And so I praise Him.