May 19, 2014
Sometimes people ask me what's the worst part about having AIDS. Over the years my answer has changed dramatically depending which symptom I was facing or side effect from the medication was particularly cumbersome. Right now, however, the most debilitating in my mind is my horrific and progressive memory loss. I don't remember how long I truly have been battling this but I do know that in the past two years it has risen to a crisis in my mind. People try to make me feel better by paralleling my experience with theirs due to age or depression or menopause. It doesn't really help me. Most times it just makes me feel more distraught.
Memories are supposed to be our footprints in our mind and hearts. The special places we've been, the experiences we've shared, the bonding we've had, the lives that we've lived and most importantly the relationships we've treasured. My long-term memory is so shot, I feel like it's left me in shambles and no one is there to help pick up the pieces. Recalling names or faces from my past is virtually impossible as are experiences. Yes, sometimes I will recall specific moments or names or activities; oftentimes these are obscure, random things and I am able to impress my listener and even myself. However the joy is short-lived because, overall, it's not enough to really sustain me.
Even if I cut myself some slack for my long-term memory woes, what has now become worse and not only a source of despair for myself but particularly for those immediately around me is the decay of my short-term memory! This in so many ways is worse. I ask the same questions apparently over and over and over. It drives my family and friends insane. I feel this overwhelming almost uncontrollable need to get whatever I need to tell them immediately down on paper via email, text or even phone so I don't "forget" to do so. Even with my little tips and tricks, it doesn't work most of the time and my short-term memory fails me. It is getting progressively worse and for me more worrisome as time goes by. It also causes me great embarrassment when meeting people, when shopping in stores or on an outing. I lose my sense of direction and easily get lost in a crowd. These then cause panic attacks and on a new day the cycle begins all over again.
I have been tested repeatedly through neuropsych testing and my memory is always a concern and does continue to show decline. My friends and family try really hard not to make it a big issue for me. When they can, we choose laughter as a option. However it is scary and even annoying to experience. I'm getting so used to it that when a new situation occurs it bothers me but it doesn't really frighten me; in most cases it just makes me sad. My neurologist commented at my last visit, "Well we know you don't have Alzheimer's because you know when it's happening." She's right and I feel horrible for the friends that I have whose loved ones have Alzheimer's or other related dementias. They must feel so out of control. That's always been my worst fear: losing control.
I battle against my memory every day. My husband wants me to try the memory program Lumosity. So far I've only been doing the trial version. I feel like I work my brain out every day while online -- reading, researching, interacting with others as best I can. I look through our photo albums. I make notes for myself. I talk to the few friends I can about my disease and its effects. I utilize my counselors and their expertise. I try really hard to stay in control and not let my memory loss get the better of me. If I didn't try I think I would just give in and give up.
That's how badly memory loss affects me. It's really not something to laugh about -- although the jokes and funny stories can be the best medicine I guess, because there really is no outright cure or medicine to treat it. Its effects are far reaching and truly the impact can be devastating and embarrassing. It comes hand in hand with AIDS dementia complex. It can also come due to depression.
No matter how it comes, if you have a partner or friend or family member struggling with memory loss, please be patient, loving and kind. Maybe all they need is someone to listen to them in a nonjudgmental way. The process can be frightening and embarrassing and overwhelming. Their struggle will soon become your struggle. Life will continue on and somehow you have to find a way to make lemonade out of the bunch of lemons you've been given.
Until next time.
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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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