While I have been compiling a booklet regarding Parkinson’s Disease, I have been learning a lot about the disease I often refer to as Little Monster. More than I cared to know, I might add. I have been told that PD doesn’t kill you and – that’s true. The part people don’t add to that statement is that although it may not kill you, it can hinder you from fighting off other things that will kill you. Sort of an ‘accessory’ to the ‘crime’, I guess you could say.
My husband and I went for ride yesterday out in the country. It was a gorgeous day. Fields and meadows, a slight breeze. We dreamed our way through the little roads just out of town and oohed and ahhed over homes that were for sale that we were going to buy when we become millionaires. Then as we were driving down a straight stretch, lined with birch trees, I remembered the things I’ve been learning. About the ‘end’ times.
A tear rolled down my cheek and as I wiped it, my husband noticed and asked what was wrong. I told him I’m scared. He didn’t understand. I explained. He tried to encourage me as best he could, telling me that may not be my story and if I do get to a point where I can’t work in my garden or enjoy our million dollar house (we wouldn’t really buy one that expensive, would we?), with its inground swimming pool and waterfalls, then my nurse (I’ve got a nurse?!?) can wheel me out (I’m already in a wheelchair?!?) to the front porch to enjoy the view. I can tell my ‘caregiver/nurse’ what things I want her to do in the garden and watch (but I can’t speak-don’t you know I won’t be able to speak?!?). He did shortly thereafter.
“Oh,” was his reply. Oh?!? Not a good answer. I’m scared to death.
Does anyone realize how much torture that will be for me? I must make it clear at that point to just take me behind the barn and shoot me.
So, there I sat, pouting. My life was over in a matter of seconds. I was possibly mute and if not, an invalid barking orders to my staff who was working in MY garden, sitting in a wheelchair watching and there was nothing I could do about it. All the while, my husband was doing laps in our swimming pool and enjoying freshly squeezed lemonade on the side, playing with my Boo and all the other grandchildren that had been born and I couldn’t play with. Super pity party. Super real.
It’s hard living with a chronic illness. It’s hard to live with any illness – never knowing what the next hour will bring, let alone the next day. It’s scary. It’s like handing over the steering wheel, reluctantly, asking – always asking – ‘Can I drive now?’ It’s like going down a river on a raft without the paddles and wondering if a water fall is around the corner, rapids, or calm water. Each day is different as each moment unfolds. You have no control.
As we continued down a dream, I snapped into reality. I can still dream, I thought. And then I noticed how green the fields around me were. And the view. The views were absolutely magnificent. And it was if God whispered, “You’re alive. Right now. You have today.”
He was right. Right now, I am alive and I have today and it’s a good day. I may hurt, it may take me five minutes to get out of this car, I may still be taking 20 some pills a day – but right now, I have today and I am going to live it to the fullest.
We headed home, and as we drew near, I had another dream. I didn’t have Parkinson’s and I was sipping lemonade on an inflatable giraffe in the middle of my pool, watching someone else pull weeds and you know what? It was a great dream and I smiled.
Journeying with you,
Sherri
