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HIV/AIDS Blog Central

The Sight of Death

By Shana Cozad

October 5, 2012

I recently had one of the worst possible scares. Ok, perhaps not THE WORST, but it felt like it at the time. My Virus came back, also known as having a detectable viral load. This meant that either one or more of my medications failed and was no longer working. The fear behind that is "what if they all failed and I'm resistant to everything?! What then? What are my options if there are none left?"

This leads to the big "D" word, not so fondly spoken of, Death.

I don't want to die. I still don't. I never did. Even amid my bluster and rage during my formative teen years I never really MEANT to say that I wish to be dead, and then my thinking was death is the so-called easy way out. Yet, with this HIV disease, death has a way of showing up as a friendly or non-friendly reminder but most importantly when you are not ready. You see, facing one's imminent demise is ONE thing when you are feeling great, healthy, sitting on a beach, sipping a Margarita. It's a WHOLE other ball of last year's chocolate when you're in the hospital and your team of Doctors thinks you're not going to make it. They shake their heads, furrow deep scowls on their faces as they examine the notes in the chart. They walk out of the room yet not out of earshot and say things such as "I don't know if she's going to pull through this one. I'd be really surprised if she did." Thanks for the encouragement, gentlemen.

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So Death has a way of getting in your face. Like, "Hi!" in your face. It's awkward, to say the least. And seriously, I can't say this enough, it never comes at a time when you are fully ready. So ready or not, one must face the daunting issue.

I view death like a peopley- type-person. Not like the Grim Reaper or anything, that's just kind of whack. I view it just as a person. I imagine it like a tired and uninspired middle-aged woman who works for the IRS and deals with the "complaint-line" all day long. Death, rather "she," has a job to do and she just wants to DO IT ALREADY. That's all there is to it. She is going to come for you one day. She's even going to wear really bad ugly shoes! So that day will happen for all of us. Sure, we don't know the specifics of the how and when, but we are absolutely guaranteed it will happen. Yep, guaranteed. I have never met a person that escaped her grasp, have you? Alright then.

So I told Miss Death I was missing some forms to file first and could not go with her. She looked down her nose at me like she had heard it a thousand trillion times already. I said I was SURE my files (also known as "my bucket list") were still outstanding and that I wasn't due to "go" until those items were completed. I quickly mentioned it would also take me decades. I shut my eyes and ignored her stare. I wrangled up images in my mind of the things I still wanted to do: love my family first and foremost; learn how to cook Kobe beef; see all of Asia; learn Spanish, Japanese; swim with dolphins somewhere; fall asleep in 1,000 different beautiful places around the world; read the encyclopedia; see/meet my biological grandchildren; teach at a College; learn to weave; and learn how to stop being afraid and angry. I could add more. But I truly believe that my fears and anger really trip me up and keep me down when I could be striving to be a better me. It isn't that I want to waste my own time. I don't. I just got very used to being angry and being afraid early in life. I didn't realize there were other options till I was in my 40's. Those people who said "happiness is a choice," never made sense to me.

When I opened my eyes she was gone.

I felt overcome by sadness. I was relieved and happy at the same time. What does one miss when they are forced to give up this body of theirs? They miss love. I thought about my son. My love for him filled my chest. The tears welled in my eyes and quietly ran down my cheeks. He was the first person I loved as DEEPLY and PERMANENTLY as I ever loved. I had loved my parents, sort of, loved boyfriends, sort of, pledged my undying love to various people, sort of … but a love for MY child was/is forever unmatched. I thought about how he looked into my eyes. I thought about how I loved his hugs. I thought about the way at age 4, when he said "I love you mommy," with no hidden agendas, no secrets, no ulterior motive, he just did. He loved me. I was never sure with other people. But I was sure with him.

It is sadness that makes death feel urgently scary. I can be honest; I only wanted more of my son's love. I wasn't done loving him. I don't need a huge house, a fancy car, and I didn't even really need anything on my bucket list EXCEPT FOR the part about loving my family. I could live in a void in a dark corner of the universe somewhere and as long as I had my son I would be OK. I knew this was true as I knew the sun rises every day. It was truth. It was the essence of my being. Love made death go away.

I fought the infections. They were like mini-wars I waged in my body; complete with the sounds of clanking swords, arrows whizzing through the air, women and children running and screaming. War is as war. And one must out-think, out-strategize, out-maneuver their enemy at all costs. I took pills by the handfuls, I was doused with IV antibiotics, I was in and out of Hospitals, I ate organic clean foods, I added supplements, I added Chinese medicine, I saw Reiki workers, energy healers, Chiropractors; you name it, I added another front line attack to get my body back.

The real medicine came unexpectedly then. It can't be defined as just Native American medicine only, it's fairly Universal. I discovered there was medicine in silence. In the silence I envisioned myself as healthy, beaming with energy and smiling from ear to ear. I could leap, run, skip and do cartwheels. I envisioned my son older each time. The silence became part of my daily practice. The images eventually had sounds; I could hear my own laughter. I could hear my son's voice. It felt real. It looked real. So I decided it needed to be real. I believed in the image of Health. I believed in the image of wellness and happiness.

Slowly and surely, with each near-death infection I got through it and got better. I got to say hello to death. And then I bid her adieu.

So back to my recent scare with the return of my virus. I found myself flooded with old powerful, body-halting fears. I found myself stuck in a corner crying. I found myself watching in the rear view mirror for the image of Miss Death sitting in the back seat. I worked myself up into a tizzy. My throat became sore and my lymph nodes became massive. I had forgotten. I had forgotten what my commitment was. I had forgotten what really mattered. Somewhere in the getting better and getting busy with life, I had gotten married, had two more kids and made a career out of HIV Prevention education. Yet somehow I was not listening to my own story of survival. I had lost myself somewhere along the way.

Revisiting "square one" is annoying. In fact, it's infuriating. I was angry at myself for even feeling "powerless." I could not understand where my power went! I drove myself in circles. I over-thought. I over-felt. I over-worried and obsessed. Then, in a counseling session right on my edge of cracking, my therapist reminded me of who I used to be and who I no longer was. I had forgotten all about silence. I had forgotten about my images of a healthy me. I had forgotten about holding onto Love first and foremost. I was worrying about silly things like: how will my husband tend to the laundry if I'm gone, what will they eat because his cooking skills are limited at best, who will do homework with my girls, and who will let the dogs out to pee during the day???

My, my, my, I had turned into a domestic goddess yet lost my whole purpose. I was stunned. So I uttered the words again, "I am not ready to die." I cried and cried. I felt my heart flood again. This time I have a grown son, gorgeous and a shining star in my eyes, always. I have two beautiful healthy daughters, 11 and 9. I have a loving husband who stands beside me and loves giving me hugs. I adopted my 14-year-old pregnant niece and now have the love of her and her baby girl in my world. I have dear and loving friends all around me. I have a loving relationship with my long lost biological brother. I have tons of love!! I was overwhelmed the more I asked myself "who could possibly love me?" I even have Facebook love!! And oh, the people I love back. I LOVE my family! I love my friends! I love my HIV community! I love my Doctor. I love so much, so many; my heart is full and overflowing. Love in silence was my answer.

I can see the images again now. This time I get to be much older, gray beautiful long hair, smile wrinkles from years of laughter. I won't do cartwheels in my 60's, but I will clap and bounce for joy as I watch my grandchildren do them. Getting older is an option that refers to time spent on this planet and in your body; I intend to do it and get BETTER. So for now, I have my new meds to take. I re-test next month. I am optimistic they are doing just fine because the pain in my throat has gone, my lymph nodes are no longer swollen and I have returned to being determinedly in-love with my life.

If Miss Death had any intentions of paying me a visit today or tomorrow she would have to deal with a defiant, unruly, and vigilant "me."

It isn't that I'm not ready for death. I just have too much loving to do.

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See Also
TheBody.com's AIDS Memorial
More Viewpoints on Grief, Death and HIV/AIDS

Reader Comments:

Comment by: Simona C (Kansas City MO ) Sun., Nov. 18, 2012 at 12:48 am EST
Be encouraged my native sister! For your circumstance does not mean it is you future! Praying for you! I picked up a article while doing volunteer time at DCAP in Lawrence Kansas for one of my classes at Haskell Indian Nations University.I wasllikw whoa wow!! I was encouraged inspired to continue help bring awareness to our people and stay stedfast in prayer for all people. Please look me up on FB we would love to have you come speak at our newly found annual HIV Awareness event hosted by Haskell Indian Nations Univ Social Work Club. Much love!
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Comment by: Brenda (Salt Lake City, Utah) Sat., Oct. 20, 2012 at 2:11 pm EDT
I really enjoyed this article, having had to face my mortality recently myself. I evaluated my life and found the only truly important thing in life is love...that of children, grandchildren, family and friends. I am surrounded with love and, for now, I am going to use any energy I DO have being with those who I love and who love me. I worked in HIV Prevention Education and testing with American Indians in my state, and when I had to leave, because of liver problems (with no virus)due to injury by medications, I cried. It was a hard decision to make, but every day I would go to work and then go home to bed. I couldn't do anything with anyone. I realized that the energy I do have I want to use in another way than working, although I loved what I did!
So glad you are doing better. I have lft's at the end of the month. I had mono at the same time, so my liver wasn't functioning. I had no disease and my docs said they didn't actually know what caused it. But my point is I have to go on disability due to fatigue from being so sick. I don't regret it. I will just have more time to be with my 7 grandkids and 4 kids.
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Comment by: Rita (South Africa) Thu., Oct. 18, 2012 at 9:27 am EDT
Oh Shana, your absolutely entertaining, spellbinding writing kept me hoping the blog would go on an on. It is so true that while a "demon", "Miss Death" in your case, is locked in the closet, it will always come to haunt you at your most vulnerable. When you face it off, it loses it's absolute power over you. Well done, Lady, for taking control back of your life and your health! There was absolutely nothing negative in the piece you wrote as far as I am concerned, it was a wonderful sketch of a life well-lived - and living!
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Comment by: Lindi (Pretoria, South Africa) Wed., Oct. 17, 2012 at 4:52 am EDT
Happiness is indeed a choice.
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Comment by: juan (chicago) Wed., Oct. 17, 2012 at 1:06 am EDT
these are very good words and make us all think that one day we will have bad days but remember mo metter what, there is a God that love us all, and as we love our childrens and family God love you more because he give you this beutiful family that you have.
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Comment by: Matthew (London) Tue., Oct. 16, 2012 at 6:23 pm EDT
Failing therapy does not mean death. I have HIV myself and work in HIV Pharmaceuticals - there are many options out there for people who have failed therapy that can bring you straight back down to an undetectable viral load.
Of course i understand the emotions you are feeling. I will undoubtedly face failing of therapy myself one day and can imagine it will really shock me. That's why we must always have good adherence to the medication.

Gosh I do find this article a little bit depressing actually being named "The sight of death". I work on the treatment and science side of HIV and feel that while it is a serious disease, the sight of death certainly isn't something I will be writing about even if I have failed a therapy. There are treatments that can even overcome class resistance - take Intelence which can overcome resistance to the NNRTI class of drugs for highly experienced patients.

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Comment by: Stacie J. (Northwest Indian College) Fri., Oct. 5, 2012 at 5:30 pm EDT
My love and prayers are with you today and always. I thank god I was able to meet you. Thank you for sharing your story of a life that was dealt to you unwilling.
I am sorry to hear this but you are a strong beautiful lady that have you inspired.. We are here for you..
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Shana Cozad

Shana Cozad

Shana Cozad is a full-blooded Native American enrolled with The Kiowa Tribe of Oklahoma. She is also of Caddo, Delaware and a smidgen of French decent. Shana has been a noted, recognized public speaker, HIV/AIDS prevention educator and CTR counselor since 1994. Shana has spoken at numerous schools, universities, AIDS memorials, AIDS Walks and World AIDS Day events. Highlights include POZ Magazine, Keynoting for the 3rd Annual Circle of Harmony Conference and (Keynote for) the Mississippi State Department of Health HIV/STD Service DIS Conference and Update. Shana's story is also among the women's voices in River Huston's book A Positive Life. Shana is currently married to a wonderful lawyer and together they are raising three children in Tulsa, Oklahoma.


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