Wednesday, June 13, 2007

Painful Days

Tomorrow is the two year anniversary of my mom's death, but my horrible grief set in today...not in anticipation of this anniversary, but because of what occurred the day before she died. Mom had been battling a rare blood disorder called amyloidosis, and had been in an out of the hospital several times in the previous months. She hated being there, and (like me) would have to be desperate to agree to be admitted. I am told that she had been battling severe nausea and dehydration for several days. Two days before she died, I got my first hint that mom was doing really bad, and so I emailed my brother to ask him if he thought I should get on a plane and make the 2500 mile trip to be there. Travel for me is difficult because of my medical conditions and physical disabilities (I can't drive, get into my parent's house because of the stairs, perform some acts of personal care without assistance, and my spouse cannot be able to go with me on short notice), and last minute travel is just about impossible due to living on a small Caribbean island.

I heard from my brother the next morning (two years ago today). He told me he didn't feel I needed to get up there. I share a tight wordless connection to my mom, and the strong internal message I was getting is that I needed to go. I cannot possibly express how much I hate myself for listening to him instead of myself.

The next day, my mom was admitted to the hospital. She had passed out while vomiting and hit her head on a metal bowl as she collapsed, and was disoriented and not very responsive. Her ignorant doctor had put on two different blood thinners several months back, which several weeks before her death had caused he to bleed into her abdomen so badly that her backside was solid black and blue from lower back to mid-thigh, and her abdomen was so swollen that she appeared to be five months pregnant. Yet even after she told the doctor about this, and needed to go into the ER to have two units of blood transfused, he put her back on both blood thinners only 10 days after the transfusion. It turns out that she passed out and hit her head, these blood thinners (and her doctor's stupidity) caused he to bleed into her brain in several places.

I didn't learn of her admission to the hospital until about 11 am, and at that time there was still no answer about what her status or prognosis was. About two hours later, I got a call from my brother, who told me of the brain bleeds, and said she was not expected to live through the night. She died at 10:34 pm that night, with my dad in her bed holding her and singing their song to her ("We'll Meet Again") and my brother and his kids at her bedside. I never got to say my good-byes to her while she was still living.

I'm filled with horrible grief over losing her -- she got me through many situations in which I wanted to die when fighting my malignant spinal cord tumor devastated my ability to function and brought on a lifetime of chronic pain. She taught me so much, loved and supported me unconditionally, and gave everything of herself to making sure that I was cared for at the highest standards of care, always had a safe and comfortable place to live as I became more and more disabled, and was my inspiration. And she was so incredibly strong -- a rough, impoverished childhood; giving birth to her first child and buying her first home while her husband was serving in India during World War II; losing a baby boy at birth, her eldest daughter to a drug overdose, and watching her youngest do battle with a malignant tumor that was supposed to be an almost- certain death sentence, but instead caused a lifelong decline into severe disability and chronic pain; suffering through a disloyal spouse and divorce after more than 30 years of marriage (and then marrying him again to live happily for the rest of her life); watching her son do battle in Vietnam and then again at home with the effects that war had on him; and reliving that worrisome experience of loved ones at war when her oldest grandson served in Gulf War I. Only other daughters can understand that respect a daughter has for such a strong, loving, giving, and wise mom, and the huge, permanent hole in your heart that comes when she dies.

In addition to being horribly sad, I'm her death left me other many other negative emotions that linger to this day. I'm still angry with myself for trusting someone else's judgement instead of myself, for never getting the opportunity to talk to her one last time (even if she was unconscious), for not being free to pick up and travel on my own on a minute's notice, and for not being more adamant about getting her to go to an amyloidosis specialty center after speaking to her doctor about my concerns regarding his choice of treatment and getting dismissed by him. I am still livid over her doctor's decision to put an amazing woman who trusted her life to him woman who has already suffered from internal bleeding so badly that she needed transfusions because of the blood loss, and I will never believe anything other than he was the direct cause of her dying before her disease progressed enough to cause organ failure and her death (which was likely months, maybe even years, away). And I'm frustrated that none of my family will even consider the reality that it was poor, substandard care from her doctor that forced us to be without her sooner than her disease did. I'm trying hard to totally forgive myself and my family, but I will never forgive her doctor.

These days around the anniversary date of her death magnify all of these hurtful feelings to a degree that I can barely function. I'm hoping that writing all of this down and putting it out there (symbolically away from me), along with my daily conversations with my mom, will help make this year even slightly less horrific than last year was.

Thanks for listening. My prayers for peace are with all of you who know what this feels like.

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