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Grieving Over Parkinson’s Disease

Posted Jan 23 2011 7:09pm

Arizona sunrise - January 2011

Well, two more days until my head stops itching!  If someone were to ask me today what the most annoying thing about having DBS surgery is, my response would be the itching from the stitches.  Needless to say, it’s DRIVING ME CRAZY!!!  But, I am not complaining – not at all.  Occasionally you will see me duck around the corner and scratch it.  Don’t tell anyone.  That’s the very first no-no on the take home instructions after having DBS and how to care for your incision – scratching the incision.  I don’t necessarily scratch the incision itself but I get as close as possible.

Bet you wanted to know all of that, huh?

Anyhow, I’ve been reading a book by Mary Beth Chapman, entitled Choosing to See. This book is about her life, moreover the loss of her five year old little girl.  What a story of heartache and walking through grief.

What caught my attention repeatedly was her outlook, her faith, her hope, her transparency (one of the most transparent stories I’ve ever read) and how similarly the lessons of walking through grief is like walking through the life of Parkinson’s.

Let me explain…

Grief is a reaction to a major loss.  People also can experience grief if they have an illness for which there is no cure, or a chronic condition that affects their quality of life.  There are certain stages to the process called grief.  It begins with the recognition of that loss and continues until you eventually accept it.  Each person’s response to grief is different, depending on the circumstances.

There are usually five stages to grieving the loss of something significant.  Those stages can occur separately, in any order, all together – however it takes to get through it and not everyone may experience them all.  They consist of denial, disbelief, numbness, for one.  Then anger and blaming others can creep in, followed by a bargaining stage (for instance “If I am cured of this illness, I will never drink again.”)  There is a stage of depression, sadness, and crying and at some point, acceptance and a coming to terms with that loss.

If you take what we have just read about grief, you can see how many of the applications Mary Beth Chapman uses in her book for dealing with grief can be applied to someone with a chronic illness.

Jerry Sittser wrote, “The quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise.”  This encourages me in my walk with Parkinson’s disease.  There are days when it feels we are surrounded by darkness when we live with so many unanswered questions regarding this disease and are surprised at so may twists and turns.  Yet, instead of standing in the darkness and allowing it to consume us, we need to take an active part and turn around, face it squarely on and plunge into that darkness and fight until we see the sunrise.  And, the sunrise is always there.  We just have to be facing the right direction.  Sometimes plowing through the darkness first is the only way to find it.  We get lost in our thinking that we have to be always heading west into the sunset.

Grief may be your dwelling place right now.  The loss of freedom or the ability to do what you used to be able to do.  The loss of a loved one to a chronic illness.  The loss of a dream because of a chronic illness.  The loss of something tangible, real and of value – life as you knew it before you found out you had Parkinson’s disease.  You may be experiencing denial or you’re bargaining with God right now.  Perhaps you’re stuck in a state of depression or feel angry over your current condition.  Maybe you’re beginning to see a light of acceptance.  Wherever you’re at, don’t be afraid to turn around and plunge into that darkness that seems to be following you, but may I suggest you put your fighting gloves on first?  Go in fighting.  Go in determined to win.  Go in determined to see the sun rise.

Walking with you,


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