When You Feel You’re Slipping Away

Yellow Aster Photo by Sherri Woodbridge
Yellow Aster
Photo by Sherri Woodbridge

This past year I could feel myself slipping away. Tormented daily with the thoughts of how ‘it’s’ going to happen, when is ‘it’ going to happen, and what’s ‘it’ going to look like when it happens (‘it’ is in regards to my having Young Onset Parkinson’s disease). It can feel all-consuming.

Add the natural element of depression that you get for free when you have PD and you’ve got yourself the beginnings of a devouring darkness that vies for your joy, your hope, your soul – your very being.

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you find easy to believe. Lies that others have spoken to or about you. Lies you tell yourself. You believe these lies from what you know is Truth because they tend to be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to those around you as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.

I am drawn back to not being sure if I can hear or see or even know the truth in the midst of the darkness I seem to, at times, have been enslaved in this past year.

My greatest struggle seemed to be with my disease. I had a rough beginning to my year when I had to accept the fact that the my neurologist, who was not just my primary doctor with this disease but a friend, would not be able to continue as my doctor as he had for the previous ten years.

I didn’t want to start over. He knew me. He diagnosed me correctly. He told me I didn’t have Lupus. He told me that I had Young Onset Parkinson’s disease and that he would be with me until the very end. Now,  I was having to accept our ‘ends’ looking different than I had expected.

A year ago I walked into his office – still independent. But it was a year ago plus – that I began to think this thing -this disease – was becoming a burden on those around me. The medical bills that came in the mail, the distance to get to my doctor. The whole – “you’ve got Parkinson’s disease” thing. Me.

I was sinking further into darkness.

Why was it so hard to let go? I constantly asked myself that question. Was it because he wasn’t the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become not just my movement disorder specialist but a friend? Was it because when he said he’d be there through my 7 hour brian surgery, even though he didn’t have to, he was? Was it because when they’d wake me during that surgery to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s ‘it’ going to happen, when’s ‘it’ going to happen and what’s ‘it’ going to look like – you know – until the end, like he said?

While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way. I made an appointment with a highly recommended neurologist/Movement Disorder Specialist three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions asked. But it was a reminder of what was now gone. My doctor.

It was nearing the end of the appointment when the new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow broke. Surely they don’t have to open my brain again and can just put a little tape around it? Some super glue?

No luck. That fix-it surgery i ended up going back in for was harder on me than the first two surgeries. However, it affirmed and reassured me of the fact that God is in control and knows what’s best and that – I am stubborn.

I tend to hold on for far too long to that which God is trying to pry loose from the clutches of my fingers. I sometimes feel like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, and what’s it going to look like?

I heard it again…

I will.

I sat in the doctor’s office and waited for confirmation that the DBS unit in right, working order. She made adjustments that day, the following week, the week after that and two days after that, she adjusted it yet again.

I now have a competent neurologist just ten minutes away and next week I will be there for my next appointment. Not because the regular ‘check ups’ are actually doable, but because I have learned this year – again – that God is in control and has His best for me in mind, despite my stubbornness. And, it is when I let go that He is free to work.

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair, but I do know who’s going to be there with me through it all.

He will.

The Thing About Nurses

imageYou’ve most likely heard about it.

She comes out from behind the curtain. Will she tap dance? Sing opera? Play music on the rims of water-filled crystal glasses?

No, one of this years Miss America comes from behind the curtain dressed in scrubs and donning a stethoscope around her neck. She’s a nurse and she gives a little bit of insight as to what that entails.

Nursing is not your usual talent that is seen or heard at Miss America pageants, but it is a talent. And a gift. Not just anyone has the talent, gift, or guts to pull off that job. But, members of The View, an afternoon gossip show made up of women, felt inclined to mock Miss Colorado for her presentation of being a nurse.

It’s all over the news. Apologies and excuses are being made. Back-pedaling is in full speed, but the damage has been done. Members of The View have shown their realistic level of intelligence while nurses of the world united and demanded an apology. And rightfully so.

Reading up on Kelley Johnson (Miss Colorado), I found she graduated this past spring with a Bachelor of Science degree in nursing from Grand View University and was also valedictorian of her nursing class. Not a simple feat.

View members mocked Johnson for her presentation, asking themselves why Johnson would be wearing a doctor’s stethoscope. I’ll just start with that…

I have had three brain surgeries in the past three years. Between doctor visits in preparation for those surgeries, pre-ops, surgical nurses, before surgery and  after surgery  nurses – I have seen and been cared for by several nurses, male and mostly, female.

They have held my hand, wiped my brow and covered me with warm blankets. They have inserted needles, changed IV bags, removed stitches. They have cleaned wounds, emptied urnals, freshened soiled linens. They have provided prompt medication, explained procedures, answered urgent calls.

They always wore a stethoscope. And a uniform. And shoes.

They all had a four year degree or they wouldn’t have been able to do what they do. Not all were valedictorians. That is a gift. A talent. An exception. A feat to be admired and honored – certainly not laughed at.

They are there at the doctors beck and call, carrying out his orders. They put the motion to the process, providing the care to get the patient back to optimal health. They are there from beginning to end – the first to greet the patient, the last to see them out the door.

They are the ones to go through the discharge cautions and warnings, tips and transitions, explaining the what’s, why’s, and therefore’s. They are cautious yet capable. They are merciful yet tough.

Talent is defined as a special natural ability or aptitude, a power of mind or body given to a person for use or improvement. It is often defined as a gift.

You have to have a gift for changing bloody, infected bandages, day in and day out. For bathing strangers and assisting someone with a bed urnal. You just don’t sign up for those tasks  unless you feel called to serve in that capacity.

A nurse, specifically a RN (registered nurse), must have a four year  degree from an accredted college. A firefighter or an emergency medical technician don’t even need a two year degree and yet we trust them unquestionably with our lives. They get thanked, praised, and commended – deservely so. But how often do you see banners posted, thanking nurses for their services after a disaster or tragedy and hospitals are inundated with an onslaught of patients? Just sayin’.

Thank you, The View, for expressing your thoughts and opinions so that we were able to bring attention to where attention is long overdue and give heartfelt thanks to the nurses who pull long, hard hours to assist in keeping us, and those we love, alive.

Coming to the End of ME

“This past year I could feel myself slipping away. Tormented by daily how’s it going to happen, when’s it going to happen  and what’s it going to look like (in terms of my having Young Onset Parkinson’s disease). It can feel all-consuming. Add the natural element of depression that you get for free when you have PD and you’ve got the beginnings of a devouring darkness that vies for your joy, your hope, your soul, your very being.Light_in_the_Darkness.JPG

Because you are in the wrong frame of mind to hear the Truth but the right frame of mind to sink deeper into an endless hole of hopelessness, you dwell on the lies you believe – those others have spoken to or about you and those you tell yourself. You believe these lies above what you know is Truth because they can be louder. You run through your checklist of disappointments that you’ve been not only to yourself, but to others as well. Disappointments of the should-haves, the could-haves, the would-haves. Regrets and failures.

You are so covered by darkness at this point you can’t hear the Truth. You can’t see the Truth. You’re not sure if you even know the Truth.”

I started  a post yesterday with the words above but it went in a direction different than what I had  thought. Now I am drawn back writing out the post I was thinking about to begin with   – that of not being sure if I could hear or see or even know the truth in the midst of the darkness I seemed to be enslaved in.

My main struggle seemed to be with my disease. I had a rough beginning to my year when I not only realized but had to accept the fact that the neurologist I had, who  had also become a friend, would not be able to continue as my doctor. Ten years under his care. 60 to 90 minute appointments averaging every three to four months over those ten years, two surgeries, and visits that felt more like two friends having tea and cookies  than being  injected  with Botox for stiffness  and pain 10-15 times  per  visit.

I didn’t want to start over. He knew me. He diagnosed me correctly. Told me I didn’t have Lupus (yea!) but had Young Onset Parkinson’s disease (oh boy!). Told me he’d be with me ’til the very end…

But our end looked different than I expected. I pictured me ushered into my last visit with him in the confines of a wheel chair, drooling all over myself, slumped over, nodding yes because I can no longer control the tremors with medications or a zap from the wiring in my brain.. Because of my deteriorating state,, people go about thinking I am  so friendly and always waving at them (tremors of the arms and hands) and so agreeable because I’m always nodding yes (tremors of the head, neck, face).

That’s not how it was a year ago. A year ago I began to think this was becoming a burden. The medical bills, the distance,  the drive.

Then I attended a conference where my doctor was speaking and found out he had been  deathly ill and was fighting a  diagnosis  of his own . The next month I went to my regular scheduled appointment and he looked worse than the month before. After my appointment he was admitted back into the hospital for the fifth time in six months and followed up with a three to six month sabbatical to get well. While he was trying to recover, I was sinking further into darkness.

Why was it so hard to let go?

I asked myself that question constantly. Was it because he had become more than the kind of doctor this world seems to be overflowing with – ones that have lost sight of the patient and have turned to production and pushing papers? Was it because he had become a friend? Was it because he really did know me so well? Was it because when he said he’d be there through my first brain surgery he really was (even though he didn’t need to be)? Was it because when they’d wake me to test the placement of the wire, he was right there by my side, holding onto my hand? Was it because I wanted him to be part of the how’s it going to happen, when’s it going to happen and what’s it going to look like – you know – till the end, like he said? Like I pictured?

I was going to be that little old, agreeable, friendly lady in the wheel chair, not the patient who worried about her doctor who was fighting a battle all his own. While my prayers increased on his behalf, so did my anxiety. I knew things weren’t getting better with me physically and knew my medications or my DBS (Deep Brain Stimulation) unit needed adjusting – at least. I had to let go.

I made the call I had put off for too long in hopes of getting my way and made an appointment with a highly recommended neurologist/Movement Disorder Specialist  in Eugene – only three and a half hours north. A much shorter distance than driving from Southern Oregon to Phoenix or flying to Minneapolis and back.

My first visit was hard. Nothing unfamiliar as far as testing and questions. But it was a reminder of what I had lost.

My doctor.

It was nearing the end of the appointment when my new doctor began to check the settings on my DBS unit. Something wasn’t registering correctly and eventually I was sent for an x-ray where it was discovered the first DBS wire had somehow been broken. 

While that fix-it surgery was harder on me than the first two surgeries, it affirmed in me the fact that God is in control and knows what’s best and… I am stubborn.

I seem to hold on for far too long that which God is trying to pry loose from the clutches of my fingers. I sometimes felt like a kicking, screaming child wanting it my way. Who was going to be there until the end?

I will.

Who was going to be part of the how’s it going to happen, where’s it going to happen, what’s it going to look like  and who was going to know what to do  about it?

I heard it again…

I will.

I sat in the  doctor’s   office   and a peace came over me  and a light began to fill the darkness as  I waited for confirmation that the DBS unit was  now in right, working order.   The doctor made adjustments that day, the following week, the week after that and in two days she’ll adjust again. And I will be there. Not because those weekly trips are actually doable, but because I have learned this year – again – that God is in control and has His best in mind  for me, even though I can be stubborn. When I let go, He is free to work.

I haven’t felt this good in probably two or three  years. The other day I was speaking to a couple and the conversation led to my having PD. The gentleman said his father had PD. “He didn’t get it until the age of 62,” he said, “but he lived ’til 92 and it was only the last two to three years that were really bad from the PD.”

That’s not everyone’s experience, but that not a ‘bad’ experience (‘bad’ being relative).

I don’t know what my end will be like, when it’s going to happen, or if I’ll be harassing my caregivers from the throne of my bed or the confines of my nursing home wheelchair but I do know who’s going to be there with me – through it all.

He will.