Nomad JuanCa's Report

CMV, AIDS...and how some thing happens...

I have always though people don't understand hiv+ patients cause none let them saw in our minds or some of them really don't care on what we feel. Today i discover something new... just few mins ago... chances are due to Hiv i could lose my view and hearing capabilities... if i develop or get infected with cytomegalovirus (si-to-MEG-a-lo-vi-rus), also know as CMV. Who knows if i don't have it already.... it is not normally tested in blood. Max a friend who is poz, whom i asked about this just asked me back "did you have your tests for toxoplasmosis and CMV???" i answered him... nope, i don't. SHIT!!! (sorry... i said i would moderate my vocabulary but this unexpected stuff drives me crazy with more and more anxiety.... and fear). Today in poz forums, i read this from a person who is living with aids and dealing with the consequences of CMV. You can find the story on Poz fourms in "Living with Hiv" part, mmm it is going to be kind of hard for you to find it... but don't worry, i can explain you. It is about a guy who is dating someone, both of them are poz, but the writer is deaf... i wasn't sure if it was because of hiv or not... and well... i found rude to ask. The thing is that this guy faces lot of troubles interacting with others, you know... to be able to communicate he has to read the lips or ask others to write things down in a peace of paper, that's actually not the problem, i mean we all human being find different ways to overcome our own limitations and i admire the way he has handled it... the problem is that others around him are not making things easier for him....which i hate to see... i mean we hiv+ people have our own troubles, why people don't understand or care about making our lives easier?. The whole story was kind of hard to me, when i was young better say a child i used to play with my mom i was blind and let her guide in the streets with my eyes closed... and i sort of know how it feels (off course it is not same being deaf than being blind.. but i sort of understand how it feels losing something you have had all your life and you took for granted as a part of yourself). I remember when my mom used to guide me... people gossiped, looked at me with sadness.. and stuff like that, everybody focus on the limitation and not in the potential a blind/deaf person yet has.... and even more sad is that people don't focus on their right to live full and happy lives, nor in our obligation to help them by making things easier... it is not an obligation by law, it is the inner obligation every single human being of helping a brother. I tried to think and visualize the way situations in his post happened....not like an story, but like if it was me the one facing it. Damn it was hard. :(

I got shocked... it is amazing how careless people can be and they way they can hurt others. At the same time i understand that dating someone with troubles might not be pleasant for everybody... but i mean... isn't love strong enough to face everything as some people say?... just wondering.

This got me thinking and thinking... and i ended up messaging many people from poz forums who are older than me in this path and asking them if the hearing lost of this guy was due to Hiv... i could not get much answers cause those i wrote were offline... i read some of the answers he got... two of them touched me a lot...

Then i found Max online and though "he should know"..yes he knew. He confirmed me the possibility of losing view and hearing due to CMV+HIV infection. It is something totally new for me.... i got impressed and scared... i could imagine... i mean i love music... what would happen if i can't hear it... or if i can't see?.. shit... how am i going to handle that :( music fills my soul....

I decided i would post about this, because i think some people might not realise how fragile our health is... and how it feels when you have troubles and try to fight them while others do not make it easier for us. A member of poz forums just replied me and told me that Hiv might not cause hearing loss (later on i got some urls about this specific issue i will post about later). He did confirm me that CMV can create blindness but it should not be a problem if i am under ARV therapy.

... i guess i want to read more and more about this in the following days... only facing the fear is how we know how to avoid this type of things... that's how we hiv+ live.. facing and overcoming fear... facing troubles and death and winning the battle. Still with it there is a part of what this person wrote at the end of his original post about loneliness and the time he had been fighting stigma related to hiv (over 20 years) to find now that he also has to deal with the careless way people treat deaf people... You know.. it is not just people face this kind of things, we all need to be more HUMAN.

Think about it. And if you want to read more about CMV and the blindness it may cause you can read CDC page about CMV or Allaboutvision.com page about CMV. Have a good night.

Labels: New life, same illness