I went to Oklahoma to see the new year in. Not liking flying so much, I definitely like it less now. I think the air bus was filled with those needing to be under a doctor's care. And of course, there was that one whose seat was next to mine, that must not have been taught manners when sneezing or coughing. It was a quiet ride, except for the explosive germs being spewed throughout the cabin.
My immune system gave way to a low grade fever, chills, tremendous headache, eyes & teeth pain, etc., etc. My new mommy (aka eldest daughter, Lindsey), insisted I stay in and rest. I did go to work the first day back, thinking I really wasn't going to get sick. My voice sounded like it was out of a horror movie, but other than that, I was good to go. Felt just fine. It was the NEXT day that things got a little intense. Yada, yada...
The real purpose for this blog is due to waking at 3 a.m. this morning, aching all over from being in bed for 2 full days and nights. Anyone who knows me, knows its one of the hardest things for me...to be still for more than 2 hours in one place...with the exception of bedtime where I need a full 8 hours of sleep.
As I lay there, wishing there was something...anything...I could do other than lay around, my sister Becky once again invaded my thoughts. Thinking of how my own body was miserable, I wondered, "HOW DID SHE DO IT"?!!! She had no choice in the matter. PSP doesn't give a person that choice. It holds you captive, like it or not. With no ability to voice her pain, or her needs, she was at the mercy of whomever would offer help, without knowing what that help should look like. She had the best care giver anyone could hope for. I will never forget the mercy...the grace...with which her husband, so willingly gave of himself to make her as comfortable and content as possible. He gave up his own needs and desires to care for hers...the best way he knew how. I don't know how he did it either. But I am forever grateful he was there for her.
I wish I would have done more. Been more sensitive to her needs. It was new territory for us all. We had never heard of PSP...in fact, it took many specialists to diagnose the problems she was having, and then a neurosurgeon, delivered the most horrible diagnoses of all...Progressive Supranuclear Palsy. PSP is a neurodegenerative brain disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech, and swallowing. For Becky, it started in her feet, and gradually moved up her body until the only control she had was blinking her eyes. She began stumbling, not able to pick her feet up, yet stubborn enough to try. Then falling, busting her head open. Denny had to stay close, 24/7 for several years, as the disease continued to consume her. She pushed herself, until there was nothing to push. She told me one time, "I tell my feet to move, but they won't." Her writing became very small and illegible. She would sit for hours playing Solitaire on the computer (her hand wouldn't respond to her instruction), after being "danced" from room to room. Denny let her do as much as she could, for as long as she could. By this time, she couldn't walk on her own, so he put his arms around her, lifted her from the chair, swayed back and forth, until they reached their destination. I've heard that your strength grows in time of need. And this was certainly a time of need for him...and her!
I'm not so sure she could see out of her eyes toward the end...they looked very clouded, and upon a visit from one of her loved nieces, she said, "Is that you, Erin?" She always called Lindsey by her middle name...how that started, I'm not sure, I just know they had a strong connection. One of the harder things to swallow was the fact she never lost her awareness of things happening around her. She just didn't have any control over her environment. As the months turned into years, she lost complete control. No longer able to speak, move, swallow.
This is what I was thinking about in the early morning hours of January 6th., 2013. I was miserable until Becky intruded upon my aches and pains. I needed to move from a sitting position (propped up so I could breathe), to a more lateral one because my skin hurt from being in one position for so long. She couldn't move. How could Denny know when she needed moved? My teeth hurt, my head hurt. Did hers? Who could know??? My mouth was so dry, I badly needed a drink of water. Did she ever get that thirsty? How could she swallow it anyway? Did she ever wish she could reposition herself? I know Den turned her frequently, but those in-between times...she must have had needs none of us knew about. How did she do it? Did she ever have an ear ache? Did she need to scratch her head, or have an itch that wouldn't go away? I have a particular spot on my back that needs scratching from time to time. I can't reach it, so I have my husband scratch until there's that "ahhhh" relief. Did she have spots that needed scratched? Who could know? Did she ever just want her faced washed? Den had a regimen with her personal needs. He saw to it that she was clean and dressed. I can't begin to imagine all he must have given to her. But, what about those times in between, that she might have needed a cool washcloth on her face, or warm one, that was out of the routine? Who could know? Were her shoes too tight? Her undergarments twisted? Was she uncomfortable? Did her back hurt from sitting in a certain position? And her neck...as the PSP progressed, it was impossible to keep her head in the normal position. It would fall back, the neck would stiffen. Did it hurt?
When I was there, styling her hair and applying her makeup for the day, I would try to talk about things I knew she would be interested in knowing. Things like how the girls were doing. How the shop was doing...yet I often wondered if she wanted to talk about her needs, but couldn't. Even researching the disease and becoming somewhat involved with the online support group, I still felt ill equiped and not much help. She seemed so at peace with the situation. When she could talk, the last few things I heard her say (repeatedly) was, "I have this jump up and down joy inside of me." I'm pretty sure she wasn't experiencing anything in the natural realm that caused that. For me, there is only one explanation. God's grace extended to her. She had reached a place where she knew the Father, like few of us do. I'm not so sure I'm there yet. I trust Him totally for the outcome of what I offer up to Him. I have a peace inside, that can't be explained, even though I may ask stupid questions and get anxious for change. Still I'm at peace. But Becky...well, I think she went beyond that. Jump up and down joy? The body that was transforming right before our eyes didn't seem to matter much to her. A once vivacious, get it done, or get out of the way kind of gal...she now was the most laid back, whatever comes my way, type of individual. I thank God for this kindness extended to her.
So...once again, I'm brought back to the importance of life. Not just the physical life we are experiencing her on planet Earth. But more importantly, the spiritual life that only God can give. The One who places deep within us, that "jump up and down joy", when we need it the most.
Forgive me for grumbling, Lord. Thank you for Becky...
Until He brings me home, here you'll find me...in Mary's World.
