I Cannot Begin to Tell You

I cannot begin to tell you what it feels like to live life daily for the last 14-some years with AIDS. I cannot tell you how it feels to take these toxic medications every day, then to be told by the medical profession that you are going to live, or at least extend your life span with the advent of a "cocktail" consisting of multiple toxic drugs, only to feel like you want to die because the combined side effects are crippling. I cannot begin to tell you what it feels like to barely have the strength to shower, or how it feels to stand in the shower and dry heave, sometimes for minutes. I can't begin to tell you what it feels like to have a stomach full of medicines and you are starving hungry but nothing sounds good to eat -- if something might, you don't have the strength or energy to get up and fix it. So you lay there nauseous and cramping. I cannot begin to tell you what it feels like to daily, for months and years on end, to feel sick.

When someone gets the flu or really bad heaves they may say to me, "How do you deal with this?" I cannot begin to tell you what it feels like to have pain that morphine around-the-clock can't touch. I can't tell you what it feels like to have shooting nerve pain up your arms and legs, your feet hurt so bad, you are 32 but have to use a wheelchair to go to the zoo. I can't tell you what it feels like to have to take more medicine when you just got through "battling" through trying not to vomit the prior dose. I can't tell you what it feels like to not have the strength day in and day out to even walk to the mailbox. I can't tell you what it is like to not remember the last good day you had.

I can't tell you what it is to like to live with the feeling of "death" looming over your shoulder daily. I can't tell you what it is like to be great friends with others who have AIDS, and you four are the only ones you know left alive out of the 20 or 30 you started this "journey" with. I can't begin to tell you what it feels like when you check in with your friends to see if they are alive. I can't begin to tell you the feeling of kissing the forehead of your very good friend as he lies in bed dead and cold, just passed away from AIDS, his life cut short way before his time -- but yet there is a calm (he's 32 and pain-free). I cannot begin to tell you what it feels like to not have the energy to even answer the telephone. Or to have the mental or physical energy to hold a simple conversation with your mom or best friend, or to answer an e-mail. I can't tell you what it feels like at 34 years old to have a team of volunteers helping you do daily simple chores such as wiping down a counter top cause you just can't get the energy. Or to sit and watch you so you eat something.

I can't tell you what it feels like to have every day potentially at your disposal to enjoy your passion in life -- mine is riding my Harley Davidson- and you just can't muster the strength to ride. I can't tell you the frustration when a friend or family member asks me out for lunch or a ride and I can't say yes because I don't know from minute to minute how I will feel. I can't tell you what it feels like to be fatigued from five minutes of walking slowly at 34 years of age and in supposed good shape. I can't tell you what if feels like to look "normal" and have people tell me how wonderful I look, yet I feel like I am going on 95 years old on the inside and just want to die. I cannot tell you the horrible feeling of having so many friends and family be there for you and you cannot be there in return -- daily. I can't tell you what it feels like to be a "taker" after being a "giver" for so many years. I can't tell you the feeling it gives you, to have your wife come home every single day from a long day's work, sometimes for weeks on end to see you sick and not smiling -- then watch her do the chores you should have done, before she can even eat.

I also can't tell you what it feels like to have to write a letter like this. I pray daily it will go away. I just want to feel "normal" -- or my age, at least. I still have a tremendous amount of hope and faith in God that I will beat these things, or at least to find an ounce of quality in each day and focus on that. Most days, my "quality" is a kiss from my beautiful wife and mom and a walk with my "tiny" Rottweiler.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).