Thursday, July 29, 2010
This has been a rough year. It's about to get even rougher.
I found out, last week, my *almost* sister-in-law is dying. She's 35.
Normally, vivacious and bubbly, W lays in a hospital bed now -- too weak to stand, and hooked to a variety of machines that keep her alive and her pain as minimal as possible. She hurts a lot. The medicine can't take it all away. Nothing can take it away at this point.
She's dying as a result of liver failure. She's been in and out of the hospital for the last month or so. Each time, we hoped the tests would show us the path to her recovery. Each time, the tests came back inconclusive. We know what she doesn't have, but we still don't know why... why her liver failed, why she has to endure the horrific pain, why she's being taken from us.
This week, the doctors told us her spleen and kidneys were failing, and failing much faster than expected. She is quickly sliding into total systemic failure. She is no longer a viable candidate for a transplant. They can do nothing to save her. She is going to die. She is going to die within just a few, short months - at most.
My brother, who is a seasonal fisherman, flew home from Alaska last week. At that point, we still had hope that she could rebound. J was going to fly back up, in time for the fish runs... but he's going to miss them this year. He has no intention of leaving W's side. We expected no different.
J waited a very long time to find his special love - his one love. It was on his 36th birthday (last year) that, after months, he finally spoke to the tiny red head at the bus stop. "It's my birthday," he told her. They went out for the first time that night. They've been together pretty much non-stop since then.
They're a darling couple. J towers over her, at well over six-feet tall, by more than a foot. He's a big teddy bear of a guy, with soft hazel green eyes and a soulful face. He's quiet, and uses his words sparingly. W is curvy and bouncy and filled with the zest of life. She loves to talk, and can engage even the most curmugeonly grump into a conversation. They are opposites, yet fit together perfectly. They were planning for an autumn wedding, and getting married on the water. They both love the water. W bought a beautiful green dress to celebrate the occassion. The dress now hangs, where all can see it, in a sterile hospital room.
J sleeps on a cot in her room. He only leaves for short periods of time, and then, only when someone else can be there with her. She doesn't want to be alone. We don't want her to be alone.
W's mother died several years ago, following a long illness. J's (and mine) mother has become her surrogate mother, and our family is her family. She's asked our stepfather to give her away. She has a way with him... she can tease him until he is unable to sustain his grumpiness. The affection is both mutual and obvious.
It's a waiting game now. We wait helplessly for W to die. We wait with broken hearts - unable to fathom Why! Why her? Why now? It's so cruel.
What will happen to J after she's gone? I worry about him. He's always been a loner, but with W's influence, he came out of his shell and interacted with the world more. I forsee him totally withdrawing back into himself, disappearing from us all for a while, or longer... I worry he'll never truly recover, that he'll forever shut his heart against any possibilities. He's so very sensitive - far more than I am. Sure, I cry easy... I cry at silly commercials, Disney movies and the sign of wildlife who lost their bid against moving vehicles. But I'm pretty resiliant--I bounce back, with time. I have a need to love, to pull people close and nuture them... to take in strays and try to help mend wounded souls. I have to reach out and be touched back. J doesn't have that same need.
He's my little brother. My heart aches at this tragedy, at his and our loss of this vibrant person we love so very much... it's so unfair. But then again, so was the loss of my son-in-law, just a few months ago. If I were a religious woman, I might wonder why God was doing this to me. Rather, I simply wonder why.
Thursday, July 1, 2010
Today's word is Persevere, defined as, "To persist steadfastly in pursuit of an undertaking, task, journey or mission in spite of distraction, difficulty, obstacles or discouragement."
It's a little after 3 AM on Thursday, and for the second night in a row, I find my efforts to engage in refreshing sleep thwarted by pain. Given, tonight's aching and discomfort nowhere nears the horrible pain I endured 24 hours ago. Last night, at this time, I was literally writhing in pain and crying. Tonight, I hurt - a lot, but aside from not being able sleep, it is endurable.
I've chosen the word persevere because for a person who suffers from chronic, neuropathic pain (or at least for me specifically), there are essentially only two choices. I can give into the pain, and let it win, or I can get on with my life as best as I can... adjusting, as necessary, to accomplish what needs to be done.
I went to work today, albeit a little more than two hours later than usual. Several people commented that one look at my face told them it was not a good day, and I hurt. "Go home and rest," they'd say - meaning well. The problem with that option is that:
1.) Going home doesn't make the pain go away, or even abate much. Had I gone home, I wouldn't have slept, and I certainly wouldn't have relaxed at all. Instead, I would have sat on the couch, watching On Demand and worried about the work I wasn't accomplishing; and,
2.) Being at work provided a little distraction. I definitely moved slower and had to fight through several pain flares, but I made it through my day, put out a lot of little fires, provided my department with the level of support and assistance they expect and need from me, and kept my To Do list from growing too much. I also managed to meet my obligations as Shop Steward by attending a pre-negotiation meeting before coming home for the day.
Another example of persevering, or "getting on with life," are the photographic excursions we go on nearly every weekend. This economy has severely curtailed most thoughts of a true vacation in the foreseeable future. These little mini-trips get us out, as a family, to view and enjoy the beauty of our region, afford me the opportunity to play with my camera and are easily modified to meet my physical needs on that given day. We spend time researching festivals and fairs that are scheduled somewhat locally. A partial tank of gas and a tasty picnic lunch is all that it costs - and then we escape to the world of pirates, explore sandy dunes, commune with other animals of the planet, and get some fantastic people-watching opportunities.
My life is very different than the life I had before the pain became such a big part of everyday living. I used to rock climb, and buck hay for my grandmother, and dance the night away. Now, I sometimes don't even have the strength to carry my camera bag, or the energy to stay up past 9 PM. I've had to readjust and reassess my priorities... and how to accomplish them. It's almost like my life is mimicking the economic recession, forcing me to make cut-backs and restructuring how how I use my physical currency. A big difference is that eventually the financial recession will pass. My vigor is not expected to return, so the changes I'm making constitute a modified lifestyle.
The important thing is that I persevere.