Where Does Your Strength Come From?

imageGrieving 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 Parkinsons 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 theyve been dealt a hand they dont 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 Parkinsons patient.)  The whys 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 weve 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 youre 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 Parkinsons 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.  Its 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.’  Its 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.  Thats 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?

Welcome to Parkinson’s Disease

Finch_Silhouette.JPGSeveral years ago, I attended a women’s conference and one of the speakers spoke on how sometimes we make plans for our life, only to have them over turned by the curves and bumps on the road we are traveling  – or planned to travel. Kind of like planning to take a trip to Holland and unexpectantly ending up in Italy.

This is my version of that story…

Welcome to Parkinson’s Disease

Life is much like planning for a fabulous trip. A once-in-a-lifetime-around-the-world excursion.

Life and its expectations. You plan for them – college, marriage, babies, moving, retirement. It’s all can be like planning for that fabulous get away to somewhere like say… Italy.

You buy a bunch of guidebooks. You do your Google research for the best places to stay, sights for you to see, airfare specials for you to book, and more. You make your wonderful plans. You will go to the coliseum. See Micheangelo’s David. RIde the gondolas in Venice. And perhaps you will educate yourself by learning some handy and witty phrases in Italian. Meanwhile, feeling unusually tired lately, you hope the trip will rejuvenate you and you will have energy to see and do it all.

You cannot wait  for all the planning to come together as you excitedly count the days until your departure. All the weeks, months, and maybe even years of anticipation and hours of preparation lead up to that moment. The day you leave. Your bags are packed with everything you will need and it’s a no brainer that everything is going to be perfect as you spend the next three months abroad.

After all, you planned for this.

Tripping as you step onto the plane, you then find your seat and settle in, all the while hoping that no one saw you almost fall.  Now shaking (something you’ve noticed you do even when you’re not nervous), you close your eyes but find it difficult to sleep, chalking it up excitement. Several hours later, the plane lands and you can hardly wait to breathe in the wonderful, warm air of Italy. The flight attendant comes on over the loud speaker and tells you that you may now take off your seat belt and in a warm and friendly voice adds, “Welcome to Parkinson’s disease!”

“Parkinson’s disease?!” you say. “What do you mean, Parkinson’s disease? I signed up for a vacation in Italy. I planned for a vacation in Italy. I’ve spent the last ten years thinking about my vacation in Italy! Dang-nabbit!!! I’M SUPPPOSED TO BE VACATIONING IN ITALY!!!”

Now, the important thing to remember is that you haven’t been taken to a horrible, disgusting, filthy place, full of pestilence, famine and the like. You have just been re-directed to a different place in life.

So, now you must go out and buy new guidebooks on this new season in life called Parkinson’s disease. And, you must learn a whole new language. Words like basal ganglia and dopamine and dystonia and so on. So much more. And you will be meeting a whole new group of people that you never would have met if you had gone to Italy. Other people who have been on a journey with Parkinson’s. Patients. Caregivers. Movement disorder specialists, to name a few.

This is not what you had envisioned. Not what you had dreamed of or imagined. It’s a different place. A place where disease is present. A place where now all  other things in your life have been, could or will be affected. It may now be a place where your marriage changes. Retirement may come sooner. Your  kids may have a hard time understanding. This life you are now living with Parkinson’s disease may have thrown you for a loop. It certainly isn’t what you had hoped for. This life you are now living is slower paced than that trip you had planned to Italy and it is certainly filled with many unknowns, but after you have caught your breath and looked around, you begin to notice that Parkinson’s has something, in a round about way,  something to offer…

You notice that Parkinson’s disease affords the opportunities to see things differently. It offers  the ability to deepen your level of compassion and understanding. Parkinson’s disease allows you to meet many new and different people you would never have met if you had gone to Italy. It gives rise to a deeper faith, thereby strengthening your relationship with your Creator.

And yet, everyone you know is busy coming to and from Italy – that place that you had always dreamed of going to and maybe even spending the rest of your life there. They all seem to be bragging about the wonderful life they’re living there, or at least the wonderful time they’re having as they visit. And for the rest of your life you will think to yourself, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that loss – that dream – may never, ever go away because that loss is a very, very significant loss. But, if you spend the rest of your life (or even a part of it), mourning the fact that life isn’t exactly the way you had planned – that you didn’t get to go to Italy and you ended up on a journey with Parkinson’s disease instead – than you may never be free to enjoy the very special blessings that this life has to offer. So…

Welcome to Parkinson’s disease. 

It’s not what I had planned either but here I am. I would much rather have been able to stay on course and made my way to Italy and writing you from atop the Eiffel Tower, but alas, my Pilot had other plans. So – having come here before you or perhaps feeling a bit better than you are feeling today on your journey, I am here to walk with you, beside you, and together under that guide of our trustworthy Pilot, we will forge through this unplanned and unimagined journey and when we get to the end of this road, may it be said of us… “Well done, good and faithful travelers.”

(That’s the new plan, anyhow!)

Facts or Feelings

 

Morning Glory Buds Photo by Sherri Woodbridge
Morning Glory Buds
Photo by Sherri Woodbridge

I used to wear my heart on my sleeve for all to see… and comment on. Not that I wanted to. Who am I kidding? I still wear my heart on my sleeve for all to see… and comment on. Not that I want to.

It is a curse, one might say, to be so vulnerable. It is a curse in the sense that you want to keep the feelings that are so deeply felt, hidden away so no one can see. Really, so they can’t mock or tease or condemn. At least it feels that way sometimes.

It is a curse in the sense that you want to keep those feelings that are so deeply felt, hidden so you don’t have to deal with them. Feelings of loss. Feelings of isolation. Feelings of inadequacy. Feelings you have when you have what others don’t. And you want to keep them hidden because they don’t, they won’t, they can’t understand.

Mulitple Schlerosis.

Lupus.

Pancreatic Cancer.

Alzheimers.

Breast Cancer.

Alzheimers.

Lou Gehrig’s Disease.

Prostate Cancer.

Crone’s Disease.

Unless you’ve got it, or a disease like it, you won’t, you don’t, you can’t get it. You can’t understand. Not that you don’t want to, but you just can’t. Not fully, anyhow.

You can sympathize, you can pity, you can encourage and support, but you can’t understand. And so, some try to empathize, rationalize, apologize and humorize the situation. But sometimes, it’s not funny, there’s no rational reason one awakes day after day to face their foe in the mirror, nor is it anyone’s fault that they or a loved one suffers with a disease.

I guess I’ve felt a bit frustrated of late, feeling as if some people in my life ‘don’t get it’. I get to the point that I don’t want to even mention PD because it is viewed as an excuse for pain, stiffness, memory loss, or any other ailment I might be experiencing at the time. Sometimes it seems that the fact of my disease, being ever present in my body, has disappeared from sight to the outer world. Yet, I know it is there as it hides within and can definitely be felt moment by moment.

As recipients of a disease or illness, we try when our bodies and our energy levels permit, to do what we are able – garden, write, work on cars, play games, socialize… We have a new vision for the short time we are allotted here on earth and strive to make the most of it. There are some days we feel we could climb a mountain ( a little one) and there are other days when we know we can’t even walk to the base of a hill. It may even hurt to glance upward to look into the sky. These are the days when sometimes others watch us (me) and I wonder if they think PD can’t be so bad. Look at her! She’s digging up flowers! No one with a disability would have that much energy or strength.

To be fair, I often don’t, just as others I know with PD don’t. We push ourselves in the tasks we yearn to function in and finish because it feels good to be used, to be useful, to work, to move. Yes, we push even in the pain because, at least for me, the pain says I’m alive, I can still do it – today. And yes, it also cautions me to take it a little easier, but not so easy that all that is left is to sit and watch life instead of participate in it.

I may wish to hide what’s going on inside, but I’ve never been good at it. I wear a feeling of loss at times, because the fact is, I’ve lost something – control. And I wear a feeling of isolation – a feeling of being alone in the fight. I wear inadequacy by feeling I can’t do, can’t offer what I used to. Everything’s just a little harder to accomplish. But as hard as things may be at times by dealing with something others can’t understand, people mean well. They intentions are honorable and they are trying to deal with this intruder from a different angle: it’s taken a part of the one they love or it’s trying to.

So I guess I’m thankful that sometimes I wear my heart on my sleeve because sometimes I don’t want to give this monster any more attention and talk about it. But sometimes I need to and that’s when someone asks how it’s going and if my answer is a little less than accurate, they glance at my heart laying there bare for all to see and re-examine my answer.

You sure? they ask after receiving a less than convincing ‘Okay’ response.

Fine. You’ve got me. I’ve got PD and no, I’m not okay. Today I just really need a friend.