The other day, as the wind literally howled and blew things from here to yonder, two Canadian geese flew by overhead, with much effort. They were squawking with great gusto as they fought against the wind.
Catching my attention, I looked up and watched them fly by. I could feel the wind’s cold chill against my face and I smiled. I watched as they flew with determination against the hidden force that tried to blow them out of the sky.
One minute the is shining, there’s not a cloud in the sky threatening rain and our spirits are renewed. Until the next day. A thunderstorm kicks up and downpours hit and miss us all day long, trying to knock us out of our game and discourage us from our determination to persevere.
Some days, weeks, months — they can all be harder than the last. We notice our meds aren’t working quite as well as we would like. Our feet drag a bit more. My hands don’t want to do what we tell them to. Our balance is off. Our words are more jumbled than usual. There’s more pain. We feel like we’re in a windstorm, pushing against the gale forces of our life while fighting to keep our wings as flapping as we press on.
As I watched those two crazy birds pass by above, carrying on about something as they were pushed here and there by the winds, I realized with each flap of their wings, they were getting stronger. Fighting against something they couldn’t see, they knew without a doubt it was there as it pressed against them and tried knocking them out of the sky. Nevertheless, they kept fighting as they flapped and in turn, became stronger.
I want to be like those geese. I want to stay up when this disease tries to knock me down. I want to fight hard and become stronger because of it. I want to squawk loudly so that others will know I refuse to give up.
So, next time you hear geese overhead, look up. I might be leading the pack.
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.
I attended a conference on Parkinson’s disease where one of the speakers stated, “Hope is medicine.” In so many ways, that is so true. Fyodor Dostoevsky once said, “To live without hope is to cease to live.” As a Parkinson’s patient, it may be hard at times to feel hopeful.
One of the first symptoms that is often overlooked while Parkinson’s is making its mark on your life can be depression. By the time you are diagnosed, you may feel like your whole world has caved in and diagnosis is like a thousand ton weight of steel that has just landed on top of you as you lay there in a pit of grief.
A hard thing for us to talk about, much less deal with as a people in general, is depression. The difficulty of dealing with it only increases when you have a condition like PD, which can lend itself to making depression one of its star players. It can play a toll in the relationship between the patient and his/her caregiver, especially if we, as the patient, neglect or forget to take our ‘happy’ pills. It is my firm belief that if we are not taking care of ourselves emotionally and mentally, it will be a struggle to care for ourselves physically. When our mind is not functioning well, we tend to look at our disease with a somewhat distorted view, making it even harder to handle. Often, the distorted view only continues in a mental downward spiral.
If you’re struggling to find anything good in living with Parkinson’s, is it from viewing life with an outlook of despair and hopelessness? Do you think you may be someone who would benefit from an anti-depressant? Let me be clear – this is nothing to be ashamed of. Having PD is real and so is the depression that can come with it. I have told my husband (my caregiver) he has my permission to ask (when I feel like giving up in life) whether I’ve missed a dose of my meds. I can, within two missed doses, go from having a good day to wanting it all to end. It’s extremely hard, if not impossible, to care for yourself when your desire to keep going is all but gone. However, when your desire to live your life to the fullest is there, in spite of PD, this life can be a a pretty wonderful thing.
How can a life with Parkinson’s disease be a wonderful thing? As with any disease, it makes you take a different view of life. Your life, in particular. Where you may have once thought of yourself as insignificant, worthless, unimportant or any of those lies we tend to feed ourselves, you may now realize that you are of value. Why else would you seek out a doctor’s care? A support group? Becauseyoumatter. You may not have worked through the whys or the hows but somewhere, consciously or not, you have realized that your life means something.
Because your life matters, your quality of life should matter to the fullest extent in which you are capable. For example, if you can offer some time to one less fortunate – reading to a hospital patient, listening to a homebound veteran tell of his experinces – do it. Doing activities like this can often remind us that things could always be worse and how good it feels to be able to help another. If you can sing, sing out loud. It’s good for the heart and for those with PD – it’s good for the voice. If you love to do artsy things, don’t stop because someone told you have PD. If you have to change to a different art form, change. Just don’t quit. Walk, if you can. This is good for the muscles, good for your heart, good for the spirit. If only intentionally around the house, walk. Talk to someone. When we feel like a burden, we can often shut down. This is when I find it most hard to open up and when I find it most needful to do it. Talk to someone. Let them remind you of the truth – youmatter. They’ll remind you that you are here for a reason and gently ask, “By the way, did you take your happy pill today?”
Living with Parkinson’s disease is downright hard. It’s a day to day battle of pain, a fight for control, and an acceptance of the unwanted. It’s learning how to live a new normal while everyone else continues with the familiar. It’s learning to realize you matter and there’s a reason you were chosen to carry this load, to walk this path. So, while on this journey they call Parkinson’s disease, take care of you. Take good care of you. And don’t forget to take your meds.
“If you’re reading this…
Congratulations, you’re alive.
If that’s not something to smile about,
then I don’t know what is.”
Chad Sugg, Monsters Under Your Head