Well here I am. I made it out of the hosptial and am about as fully recovered as I am going to get. While I lost eye sight in the left eye I haven't lost sight of life. Try saying that three times fast! It was confirmed as many of you read from Joshua that I had an infection, specifically HSV (Herpes Simplex Virus 1), hijack my lymph system and travelled to my brain where it cut off the oxygen to the optic nerve in my left eye. As most of you know and remember I also have Cytomeglavirus (CMV) in the left eye as well. The CMV would "flair up" causing me to have bouts of blindness in my left eye. The difference is I knew when the blindness was coming on and that it would only be temporary. That however is no longer the case, as I have lost the vision permanently. So while yes it does suck, I am really attempting to look at the glass as being half full in this regard.
While in the hospital a very dear friend of mine offered me the opportunity to travel across the country with him to see the great United States. I always wanted to do so. While I have travelled quite extensively I have never done so by land. I have always flown. There are so many things I want to see. This trip will give me the opportunity to do so. My fear is that if I put this off then I will never get a chance to see things like Yellowstone Park, Mt. Rushmore, The Grand Canyon...All of a sudden a bright, beautiful world is only an infection away from being black and void. I will not allow that to happen. I pray that it never happens but if I do lose sight in my right eye I will have my memories of seeing the sunrise in Arizona, the Colorado River flowing through the Grand Canyon. That my friends, my memories (not only of my road trip...but of you), will be the things that keep me going in this world. So in case you haven't deduced from the paragraph I took him up on his offer and am leaving in about a week. I will be gone for 2 months. Check back here for picture updates. While on the trip I also will be keeping a written journal and once I get back I am going to publish it (or atleast the edited version:) )
For the time being I have decided to not start my AIDS meds again. My above road trip has nothing to do with it. I simply know that I am not in a place right now to where I would be compliant with the regimine. If I am not going to comply with taking the meds I simply am not going to take them. Doctors agree...wait until you're ready. So that is what I am going to do. I will take antibiotics for a few more weeks and that will be the end of regular medicine.
AIDS is a very dark place. Even I, with my strong support system, get very scared and very lonely when I am in a hospital bed. After my spinal tap on Monday when I woke up I couldn't move...I could barely talk...and all I could do was see (out of my right eye) the few people who were standing beside my bed. Everyone brace yourself for what I am about to say. I was TERRIFIED! I broke down and cried. I felt so helpless. I couldn't even reach for anyone's hand. For the first time since my AIDS diagnosis I was truly afraid that I was going to die. I openly admitted while sobbing hysterically that I didn't want to die. Not that I was or am afraid of death. I simply enjoy my life. Obviously I don't enjoy being ill but that is only a small portion of the time in the grand scheme of things. This visit to the hospital has shown me just how frail life is. To be totally honest...it has shown me that I am not the picture of health that I more times than not project to you all. This illness has shown me just how quickly life can end. Illness of the past has simply shown me how quickly I can catch pneumonia. AIDS is no longer simply a diagnosis for me but it is a living, breathing reality. One that I cannot pretend doesn't exist because it doesn't fit in with my life. AIDS is not who I am...it's what is me.
If you've made it this far congrats! In all seriousness I want to take a few lines to thank all of you! Treatment/recovery is 99% attitude! Without all of the positive people in my life I can't say that I would have the attitude that I do. All of your thoughts and prayers (for those of you pray ;) ) certainly helped me. As crazy as it may sound when I was able to sit up in the bed to eat and entertain my guests I knew that I was able to do so because of all the happy thoughts that were coming from you. The reason I know that is because when you all were sleeping, and I should have been, I was screaming for the morphine :) I do love every single one of you and can never express enough thanks for the calls, e-mails, visits, flowers, and gifts. You were (and continue to be) appreciated in a very difficult time. If there is ANYTHING I can ever do for any of you, you know my number and I expect you to use it.
With much love and gratitude,
James
7 comments:
Hi James,
I happened across your blog a few nights ago, and I sat down and read the entire thing, front to back. I really sympathize with you, and I want you to know that I am sending your all the positive thoughts I can muster. You are an incredible individual, and I hope to hear about your trip to the US soon! I'm in Arizona for the summer (I live in Colorado, another beautiful state, normally) and I can tell you that you will not be disappointed by the sunrise/sunsets. :-)
I hope this message finds you well, and you continue to be the incredible human being that I'm positive you are.
My aim screen name is holodoctor1, and my email is holodoctor1@yahoo.com; I would love to hear from you.
Talk to you later,
-Joe
James i have linked to your blog for quite sometime now from mine. I also see that mark at aids.about.com has linked to you....hope you r well and was just thinking of you tonight. Hope your well good luck, and god bless
james
Hi James,
I have been HIV+ since 1986, but somehow I have never been where you are. I had to have a spinal tap for cryptoccocus like ten years ago or something but was not as ill as is normal for that. And my T-cells were below 20 for years before protease inhibitors, so I don't know why.
And it's been so long now for me since times when people around me were dying. I am so sorry for your losses, and I'm wishing you even more strength and more love around you than you already have.
In 1994 when we thought my life was measured in months, my cousin and I drove cross country and went to Arizona and New Mexico, Colorado, and Nevada for the first time. And we spent way too much money to go through the Grand Canyon in a helicopter. I don't have words for it.
We came to San Francisco just to visit and I stayed. I lived in a hostel and with people I met till I could get help with housing. It was too much of a relief compared to my experiences in Texas then. SF has been very good to me, kept me going, but I am sick with loneliness. My family live in TX and TN, and there is no HIV community at all here if you're straight. I wouldn't want to be in just a straight community. I just want to be included with people my life is most like.
I don't know how you meant "AIDS is not who I am..it's what is me," but it resonated with me. I can't be like billboards that say, "I refuse to let HIV define me." I guess it is not who I am, but there is not a single level of my life that is not defined by it. I feel like the only defining difference between my life and gay men's who have had it this long, is the being segregated out.
So I'm not sure where I'm going at this point. But I hope very much that you are going to the Grand Canyon!
I linked to your blog. I haven't read all of it yet, but I will.
Wishing you well,
sfp
I am very inspired by your honesty. Good for you. It takes so much strength and wisdom to allow yourself to be vulnerable to fears and to pain for some time. I cannot wait to check back about your trip. May God bless you. You are in my prayers.
with peace and love,
from someone you do not know.
~Cat
Wow...I hope u got to see the states...
Don't really know what to say other than at least I really know what you mean about the lonliness.
Hi James, I am a positive woman living in Italy. I have been reading just a few posts in your blog but I'm going on reading. I just write to tell you that I understand your fear to be unable to "see and live enough life".
hugs
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