June 23, 2014
I had no intention of dwelling on my first piece about my memory loss. Yet I have been overwhelmed by the email response I have received from infected men and women literally from around the world. Readers have opened their hearts, minds and souls to me, most in search of understanding and compassion. People have written due to the stigma and embarrassment and fear that they face in the admittance of their own memory loss issues. I truly had no idea it was such a large issue affecting so many. I selfishly thought it only affected me :-) -- well not really of course, but on a really bad day that's exactly how I feel.
I don't have any true words of wisdom to impart to those struggling. I wish I did. I wish there was a magic pill. I wish I held the key to stop the torment. To date, it doesn't appear that there is a magic key. What I have learned is that it's possible to intervene with early medical care, neuro-psychological testing and HIV antivirals that cross the blood-brain barrier. I'm not certain that any of that can stop the progression of memory loss but it can provide a clear clinical picture and a measuring base for the ongoing decline.
My own memory loss is really significant. Because I have been so focused on all of this, I had a dream a few weeks back about my best friend Brenda's wedding. We were both in our early 20s. I woke up very shaken because in my dream everything was blacked out. I couldn't remember anything. When I awoke it was the same way, I was unable to remember any details large or small about the wedding, or preparations, etc.
I was embarrassed and mortified to have to call or email my friend and tell her I had no recollection of her wedding. I procrastinated for days. I felt stupid and ridiculous. At one point I even debated with myself if she had even gotten married, thinking maybe she and her husband were just living together, not legally married. Anyway, my other friend convinced me to write to her and when I did she answered right away. We spent two long hours on the phone walking together down Memory Lane. It was beautiful, funny, sad, crazy and hopeful all at the same time. Just like our friendship had been. When it was done I still had no recollection of most of what she told me in a time period that covered at least 6 years. That was the most distressing part. I had lost all of that. However I hadn't lost her and I needed to focus on that.
In my conversation with my friend, we discussed all of our silly moments especially mine. After my HIV infection I had created a bucket list and on that list I had set out to meet Oprah. My dream had come true when we finally went to Chicago to watch a taping of her show. After the show Oprah watches every guest leave and shakes their hand. I got the courage up to ask Oprah if she got my letter. She replied, "No; I get lots of mail." In other words: move on, keep the line moving. Stubborn as I am, I turned back and said, "Yeah but I sent mine certified." She said back to me, "I have a whole room full of certified mail!" Now I was stubborn in my younger days and this memory is one that I do sort of remember, but I needed my friend Brenda to piece it together for me and she did through tears of laughter that day on the phone when we both realized what a fool I had been. The bottom line in that exchange was that I need to keep that memory alive, so Brenda will have to hold that key for me. I trust that she will always, with an extra smile on her face.
The doctors, therapists, psychiatrists and researchers can only give us so much information. We have to be able to reach out to family, friends, significant others or children and let them into to our memory nightmares. It's OK to ask for help and keep asking. Tools like photo albums may help or conversations may jog memories and if they don't maybe it's help just to hear the old stories from someone who knows you best. There's a level of care and compassion and love that can't be imagined and loss of a memory can't take that reality away.
So, in closing this follow-up blog, please get to your doctors to discuss any memory issues you are finding in long-term or short-term deficits. Talk to friends and family and explain how you are feeling. Be honest and try to give examples. It really helps if you can use real-time examples. As my memory has gotten worse sometimes I forget things within an hour of them occurring. Be specific. Write things down to share with your doctor or bring a friend or family member into the doctor's with you. Ask for the neuro-psychological testing to get a baseline feel for where you stand today and maybe even an MRI of your brain. Discuss specific antiviral medicine that can cross the blood-brain barrier.
Lighten up on yourself. Learn to laugh when you can at the faux pas that will eventually come. It's OK, you can roll with it. That's what I've learned. My memory is not to be trusted, period. It's long gone. It is slowly dying in the short-term areas as well. However I'm still living so I constantly need to make new memories and live in the moment. I hope you can too.
Until next time,
Lynda Arnold, RN, BSN, MBA, was one of the first health care workers to go public after her occupational infection with HIV by an accidental needlestick in 1992. She successfully launched a nationwide campaign for safer needles in hospitals and medical facilities which resulted in the passage of federal legislation mandating the use of such devices in facilities nationwide to protect all health care workers from accidents such as hers. For many years she was a sought-after speaker on living with HIV/AIDS as well as health care worker safety issues, and she traveled the globe educating others. She garnered many awards, national distinctions, authored two children's books, and was the subject of an award-winning documentary. After the birth of her youngest son, Lynda chose to step away from the public eye and focus on raising her young family without the spotlight. As a blogger for TheBody.com, this marks her reentry into the public eye -- 20 years after her infection. She can be reached for further engagements, commentary and questions through her email.
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