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?
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 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.