You’ve just gotten home from school. A conference. A training course. What is one of the first questions you may be asked?
“Did you learn anything?”
I remember coming home from elementary school and being asked by my uncle, “Did you learn anything?”
No I didn’t.
That was my response, because day after day that’s how it felt. That’s how it seemed. But days after long days you realize you are learning.
I was asked just that question regarding the seminar I attended a couple of years ago.
“Did you learn anything?”
Anna Sanger Reed, one of the staff members of the Parkinson’s Resources of Oregon, came from Portland to Medford to teach a Parkinson’s Disease 101 event. She gave an overview of Parkinson’s disease (PD), which included general information regarding what PD is and who can get it. She went over the symptoms of PD, treatments and therapies available and other resources that are currently out there.
Anna mentioned a study done on depression in PD patients and the results showed that the disease progresses faster when depression is involved. Makes you want to become a clown or buy one and have them around. Maybe not. Many people are scared out of their wits over clowns. I guess they can be intimidating with that big hair, those big lips, the big shoes, and always hiding behind a painted face.
So, I guess that would be the anything I learned (that depression actually aids the progression of PD) which when I think about it, is good to know. Because so many people can battle depression in PD, it’s important to know if you’re one of those people.
Do you feel ‘down’/’blue’? Do you feel lifeless and tired, like you’re dragging? You have no energy and want to just crawl back into bed (if you got out) and go back to sleep? Are your thoughts focused on defeat or hope?
Because depression can be life threatening in it’s own way, it’s so very important to be aware of any signs that you may be struggling in this darkness and seek help right away from your doctor. Or go get yourself a nice , well-behaved clown.
As a child, I was taught not to question my parents. Growing up, I decided since I believed that God was sovereign and had a reason for everything that He did, there was no reason to question Him, either.
A few years ago, I finally got angry. I really hadn’t gotten angry yet over this thing called Parkinson’s disease, but I figured it was about time.
I had gone through some first stages of dealing with my Parkinson’s – sadness, grief. But never anger. It had been two years and it hit me. I was only 47, my doctor confident that I’d been struggling with this Little Monster since before the age of 32 (when it had been misdiagnosed as systemic lupus). But for me, on that day, it had been two definite years of knowing that I’d been labeled with Parkinson’s disease.
And that day I was angry.
Because I was only 47.
Because my right arm and my right hand shake.
Because my legs shake and my feet 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’ve been known to trip on occasion and then fall.
Because I have fallen down stairs twice. Ungracefully, I might add.
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 can get nauseaus from the medicine.
Because I have Parkinson’s.
Those are all pretty good reasons to be angry, right? I wasn’t angry at God, but perhaps it would be better said, I was angry with Him. He allowed this to be, but He 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?” and there doesn’t seem to be an answer there that we are aware of to the question He asks of his Father. But I am quite confident the answer was there even if we are unaware of it. And I am quite confident that Jesus already knew what the answer was, just as I usually know the answer to my why’s, making it useless to even ask ‘Why?‘.
Why do I have Parkinson’s?
Why not me??
Why does my friend have kidney disease?
Why do those we love struggle with hard things?
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 about their own children to get off of drugs?
Why, why, why?
As little children harassing our parents, the quick-witted response was usually, “Because, because, because!!!” As God’s children, the wise response is often also… “Because.” We can ask why until our list of questions is exhausted and the answer may still come back as “Because.”
I think asking why almost gives you an answer within the asking. By asking why of an all-powerful, all-knowing God, we are admitting that we cannot and are unable to control our lives nor the lives of those who we love. We realize that God is real, even though we may choose to walk away because of what He allowed for reasons we may never understand. We may choose to deny Him because we don’t agree with what He allows. He gives us a free will to make that choice.
However, while He allows things to happen in life that we would prefer to have pass over us and leave us unscathed from life’s messes and mistakes, He remains sovereign and is there with us, no matter how bad it gets. He will make us stronger, wiser, and humble inwardly and more compassionate, patient, and forgiving toward others outwardly. If I cannot understand the why’s, I can be thankful for the blessings that come out of the why’s.
So, ultimately, I have Parkinson’s disease. If just one life is encouraged, if just one life is strengthened, if just one person feels more hopeful and not alone – then that is why I have this Little Monster hanging around. And, it may not make me happy to have PD, but it definitely brings me joy to be used because of it.
When my son was born, until the age of almost three, he had constant ear infections. After the third or fourth time, it became easier to identify that another was coming on and I could get him to the doctor before it became too painful. Most of the time.
I do recall one experience of having that motherly instinct of knowing he was getting another and taking him in to the doctor. His regular doctor was out and another doctor saw him. He assured me after checking him briefly that there was no cause for worry. I wanted to assure him that I was most certain he was wrong.
At twelve o’clock that night, my son woke up screaming, his ear filled with pain. I did everything I could to help him. I gave him Tylenol. I held him. I rocked him. I cried with him. He screamed in pain until morning.
A few weeks ago, I had an ear infection. It began with a gradual achiness followed by intense pain and pressure for about five days, at which time I felt it was going to burst and to be quite honest, I almost wanted it to just to relieve the pain and the pressure.
No one ever gave me Tylenol. No one held or rocked me or saw me crying in the dark when I could not sleep because the pain was so intense, but then, they did not know because I was not crying out in agony.
This is what I learned…
When my son, at the age of two, was in pain, he writhed in discomfort and screamed for release from the grip of his ear infection. Oh how I wanted to comfort him and hold him tight so that he knew he was not alone. I rocked him to try to soothe him and as I held him closely, I cried with him, wanting badly to be able to take his pain away.
When I was in pain a few weeks ago, for the most part, I kept it inside. No one else needed to hear how much it really hurt. No one could rock me and comfort me and it made me think… Isn’t that what God wants us to do with him? Yet, we try to keep the pain in our lives and the heartache we experience hidden deep inside, when all the while He is waiting for us to cry out to Him for help.
A friend was saying that another of her friends was not going to be able to do an event that they had planned for this year. She said the other person had been having some recent struggles and had to cancel. Then she withdrew and ‘disappeared’ (not literally) from her network of friends. My friend made a comment that went something like this: “I’ve told her there’s still a spot for her on the team, but she’s got to walk through the door.”
I liked that.
Do I sit and suffer, failing to run through the door crying out to God for relief? The only One who can truly subside the pain? Do I writhe in pain when it hurts so bad inside that I think I cannot tolerate it for another minute or do I run quickly, first, to the One whose arms are always open wide and waiting? The pain of life can come in a foreclosure on the only home you have known. A divorce. An illness. The loss of a loved one. You lose your job. The list goes on.
Sometimes that is the only thing we can and should do. Sometimes that is the best thing to do. To become like a child and run into the arms God and just let Him hold you and rock you. Let Him soothe you and wipe the tears as He wraps you safely in His arms.
He is waiting to love you. Are you ready to be loved as only He can do? Then… Run!
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?