I've written 8 blog posts this year. 8. Real life has taken over and it's been a HARD year. It's been a year that has TESTED me. It's been a year of HELL. I've been silent on this blog and not too much more active on my other social media. Twitter isn't so bad and isn't too time consuming. Facebook is what it is, I guess. I've managed to get on there from time to time and like a few posts and try to even post a few things on my author and personal page, but not much beyond that.
And I feel BAD about that. Over the course of my authorhood, I've met some incredible authors, editors, bloggers, etc. I believe that one good turn deserves another. I've always wanted to show my support by reading and reviewing, sharing links to their works, etc. Because being published with a small or indie press is difficult in terms of getting your books out there in the vast world to be noticed.
But this year has sucked about everything I have out of me. So, to my fellow author/blogger friends, I apologize. I like to keep my private life, well, private. I've always thought of myself as an upbeat, happy kind of person. I'm a lover of life, of people, of things. And I am still all of those things, but after putting it all out there, I hope my absence is understood. Because I truly am sorry that I've not been more supportive as I've watched friends and fellow ET authors new books release over the months.
I've said in previous posts that I am the Director of Nursing for a large facility that provides services to individuals with MR/DD. My clients are vulnerable more than most as they do not have the capacity to fend for themselves. I'm not only their nurse, but their advocate. I have to have their best intentions because many of them don't know how to go about taking care of themselves or make sound decisions. It goes way beyond just showing up and giving meds. It goes beyond 5PM. You are always thinking about them. Always.
At the very beginning of the year, my work counterpart decided to leave for another job. It was devastating to me in many ways. Because I liked her, because now my load was going to double when my back was already beginning to break, because training someone new was going to be akin to hell. She left the company and within weeks I found myself in one of the most ethically, morally tormented, painful positions I've ever been in. I had a client with Down Syndrome who was the sweetest lady. She was just adorable. I don't know how else to describe her. She wasn't a person you'd ever forget. And she had a childlike innocence about her that endeared her even more to me.
Within days of my counterpart leaving, said client fell drastically ill. So ill that she was being discharge with Hospice. It just came from nowhere. And I was devastated. But there's more. So much more. I had to walk through the valley with her. Hospice wouldn't come into the home and administer her medications. There was no one but me. And please, before I begin, this isn't a slight towards Hospice nurses.
I never signed up to be a Hospice nurse. That's a role I quickly ascertained early on in my long career as nurse that I wanted no part of. My hats off to those in my profession that can do it. That can take it mentally, emotionally and spiritually. I cannot.
At any rate I was faced with 2 choices. Leave her or stay with her. I decided to stay. And it just about broke me mentally. I stayed by her side for 4 days administering medications to keep her comfortable. For those of you who have never witnessed another human being in the dying process, it's something I could never capture in words. I sat up with her, giving her medications every hour on the hour. There were times she was suffocating on her own bodily fluids and I would gather her in my arms like a child and tell her it was okay to go, that she was loved that she would be remembered. It's something I'll never get over. I'm getting through it, but I'll never get over it. Her death will haunt me all the days of my life.
Within days of her passing, (remember me saying my clients are vulnerable and childlike) we had another horrible event that brought down the wrath of the law and other governing bodies. Justice was served, but it was yet another event that made me take a step back and say, "I am but one person and they are many. There's too much liability and responsibility with this job. I cannot do it anymore."
I cannot go into the details, but my mind was already fragile and worn from the seriousness my job can place me in from time to time. This was the proverbial straw. And so I decided it was time to find another job. And it felt like I was dying inside. I had been with my company for 11 years. It felt like as a nurse, that is where I grew up. I cried and cried. And looked for other jobs. After telling my supervisor (who I love dearly) about my intentions ... well, it was bad. She was devastated because no matter how hard or bad or tough things became at work, we always had a feeling of 'we're in this together' so that brought on it's own emotional guilt and torment. And I never wanted to do that to her. But something had to give.
After the end of my notice was approaching she pulled some serious rabbits out of her hat, got me the work help I needed, and I decided to stay. And things did improve. And then in May I received news about my twin sister, my beloved twin sister, that truly made my world come to a screeching halt.
At the beginning of May, my twin called me and said she woke up blind in her left eye. As a nurse I quickly began assessing her myself and asking those questions a nurse would.
"Is there any pain associated with your left eye?"
"Is there any drainage?"
"Do you recall any injury to your left eye?"
No, no and no.
"Seriously? You're blind in your left eye?"
Yes and yes.
I knew this wasn't right. I suspected retinal detachment as in my brain I was digging deep for what would account for blindness in one eye without any pain. That was the only thing I was coming up with in the few moments I had to assess her over the phone. I was able to get her in with my eye doctor the next day. She had no insurance. These guys were kind enough to set me up on a payment plan. After nearly two weeks of them seeing her in their office, numerous tests, antibiotic eyes drops and steroids, her vision did not come back and they had no answers.
They advised me to take her to the hospital as the worst case scenario, the one thing they hadn't ruled out yet, the dreaded diagnosis that could change her life and mine, was that she might possibly have a brain tumor that was causing the blindness.
I was sick at the thought of it and refused to believe this was the case, because, you know, she was healthy and had no other symptoms to support this diagnosis. But I drove her up to this large teaching hospital anyway. Because after nearly two weeks, I had no answers either.
After hours in the ER and undergoing every test known to man, the official diagnosis came in. Brain tumor. It felt like my world stopped, like from the moment the doctor came in and told us that, I held my breath. And continued holding my breath until on July 5 she underwent a 12 hour surgery and survived.
My twin and I look nothing alike. I'm short and prefer to call myself a cupcake cutie rather than other terms such as thick or chubby, while she is tall and slender with model-quality long legs. I have blonde hair and green eyes. She has nearly black hair, the perfect tan and blue eyes so blue, you take a double take. She's beautiful. Always has been.
There were so many things running through my head during those weeks of pretesting. Was the tumor cancerous? Would her vision come back? How would she cope with losing her beautiful hair? Would she even survive the surgery?
The neurosurgeon made it perfectly clear that the location of her tumor was smack dab between her eyes and was in a tricky location. Of the hundreds of surgeries he'd preformed over the years, less than 5% of his patients had tumors in her location.
We asked what would happen if she didn't have the surgery because of all the risk associated with it. He replied that she would sooner rather than later go completely blind and that (tumor in frontal lobe) she would develop early onset Alzheimer's and would die.
I couldn't hear anything past that. We had to roll the dice. She had to have the surgery. The alternative was too horrible to contemplate. And so I continued to hold my breath. Uncertain. Scared. Terrified at the possibility my twin could die at such a young age. She had kids. A life. And I loved her so much. But at the end, those are not bargaining chips. It doesn't matter because bad things happen to good people every day.
So on July 5th, I drove her up to Ruby Memorial at 5AM and she hugged me before going into pre-op. She wanted sedated before they shaved her hair and she wanted me to remember her as she was before in case she wasn't there after.
I can still see her in her cute sweats and T-shirt, her blue eyes filled with tears, framed under the light and glow that only a hospital light can emit. And that was the last time I saw my sister. The way I remembered her. The way I knew her. The way I loved her.
After 12 hours, the doctor came out and reported that she lived through the surgery, there was minimal bleeding on the brain but that he would have no way of assessing her cognitive ability until she woke up. I never read into that because I didn't hear anything beyond she lived. And I finally let out the breath I'd been holding since May. My sister lived. The joy that spread through my heart was warm. We were so lucky. There were other families there in that waiting room with me that were not so fortunate.
And then the unthinkable happened. As a nurse, I questioned my judgement, my place in a profession I felt I no longer belonged to.
Her recovery physically was impressive. She could walk and talk and do things I would've never believed possible for someone who just had a golf ball sized tumor removed with 30 staples in their head. But the words coming from her were not my sister. And I couldn't understand. I didn't understand.
Her first weekend home was hell. Pure hell. Behaviorally she was not my sister. I'd loved her my entire life and treated her as such. But the things she did, the things she said, were some of the meanest, most hurtful things to ever cross her lips. It was like the preacher who had never cussed a day in his life developing dementia and becoming hell on wheels. I couldn't understand. Where was my sister? It was like the girl I grew up with died on the operating table.
And then it came to me. She had surgery in her frontal lobe, that place in your brain that controls/regulates thoughts, feelings, emotions and so much more. I paged her physician after running out of ways to account for her behavior. And we had a lengthy discussion. He wasn't surprised. But I was. Because in all the weeks of hell leading up to a surgery she may not survive, I never once considered that she could come away with a frontal lobe injury that would change her entire person.
She has days where she rubs her face in frustration telling me she can't get the words out. I watch her be at war with herself. And regardless of what crosses her lips, I sit back helplessly and repeat to her that it's not her fault. She had a CAT scan yesterday and there is still slight bleeding on her brain from the surgery. There's still some bruising and swelling. Her doctor tells me it could take days, weeks, months, or even years for her to return to who she was before. He also tells me she may never. And I can't think about that. I can only think of today.
Today she had a good day. She made some sense. It's the first day she's been this way. But I'm back to holding my breath. Because now I realize there are things in life worse than death. If the sister I knew and loved and grew up with knew some of the things she has said and done in these weeks after her surgery, it would kill her. And so I grieve for the loss of that sister that I loved and am learning to love this new version of her. But I have hope. Not false hope. But real hope that one day I can breath easy and she may return to me yet.
I've lived through death. I lost both of my parents and a brother before turning 30. And of course all my grandparents went before losing them. It was painful and I never got over those losses, but I managed to get through them. But this. This is something I've never had to go through before. Grieving the loss of someone who still lives. It's new territory for me.
All I can do is continue to pray that each day she wakes up, a little piece of her will come back. It's the small things I'm hoping for like seeing recognition in her eyes. I don't know what the future holds. I pray for her. I pray for the strength and patience to know when her behavior takes a plunge, that it's not her talking. I pray she comes back.
So, I've been silent because there's so much I think and feel and want to say, but, like her, I don't know how to get it all out, I don't know what to say, I don't know what to do. And during those times, all I can do is be silent.