Nomad JuanCa's Report

Today is just a great day... of my new life. Yep i am still diagnosed with a non curable illness... but i am OK with it now. This illness is my new partner. Like Lilo and Stich (with the difference i am not Lilo and the illness is not Stich LOL!!).. but i mean... we both can get along now.

These days i was reading a blog of a woman with my same illness and said something like "everything has changed since the moment Lola moved with me". Lola is
the friendly name for the illness. I should actually find one like that... don't you think? It might also make the long way in front a bit easier. If i am not wrong, non curable illness are made of viruses, or something like that.. and they can't be killed because they are alive and change... they learn and mutates and become resistants to treatments. So... if they can THINK and LEARN to avoid the effect of medicines, if they are ALIVE... and keep on expanding inside my body. Wouldn't it be good if i sign the peace with my new friend?

I mean we are sharing same room (my body) what i do...affects him (or should i say "it"... who cares!!) and what he does... affects me. None of both can quit our
body... without loosing the other one. My new friend needs me... and i don't need him but i can't just get rid of him. He will be with me for the rest of my life. I can't leave cause it means dying and that means the illness would die with me. The illness can't leave... well.... it actually could, the problem is that there is no way to force him to do it right now, not a way to kill him.

OK, if.. illness thinks and is alive... can i talk to it? can we be friends a bit? can i talk to it like some people talk to plants and babies before being borned? can we sign peace agreement and say we won't kill each other?. If that is possible i want to try it...even though i know an illness like the one i have might not be trust worthy... he knows that if i could kill him.. i would. And i know his goal when joining me... was to kill me too. We can be friends... perhaps.... but i have to keep an eye on my back. Always.

OK, change topic!!!

HEY....today, is my first week after diagnosed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And i am so OK now!!!!!!!!!!!!!!!!!!! Isn't it great?. Not many things have changed in my life these week, just i have had a bit of anger and frustration.... not sad at all. I had to talk about my illness to a couple of AIESECers who asked about it, and it actually felt great. It was too heavy weight on my head. And today... today was a big day. I told my mother about it.

I wasn't ready, i knew i wanted.. but well... i was waiting the right moment, when suddenly the right moment crashed with me. She came to visit me this morning and said: "man... you are loosing weight... are you OK? have you seen Dr? what do you have?". Then i knew i had to tell her. It was the best moment... Momentum...it is all about it, don't you think so?. I could have lied... but then the Momentum might not have come again so i took my chance. Took air and said "i am ill with swwsxswxswe" (don't be so curious!!LOL). She stayed quiet....and then asked me if i had seen any Dr. So i told her a bit of how my last weeks have been. We went to talk to a counsellor and it was all soo fine... amazing for me... even though i know she might be suffering inside but don't want to let me know... i hope that is not
happening, but i guess when one is ill one can't prevent our parents from suffering... even if we wish so.

Well, that was a big movement, damn... it was a good Momentum, way to go Juan!!!!. Counsellor said... you are doing it right!!! doing the right things boy!!!.
And i loved it. It feels good to do what it feels right!. Tomorrow will be another good day, first Dr appointment. I need it, my life is all fine... but my stomach is still suffering of diarreah... will be a month already. It comes and go... getting worried about it. Tomorrow the science will relight me and save my life. :)

I have so many things to say.... but first i want to say is... this is me. As today... this is the way i look now. (pics just taken, excuse me for the terrible hairdo!!)

And yes... i am diagnosed with a non curable illness yet. Ahh and the beard is not related with the illness... it is just i have been very lazy to shave, plus someone told me it looked nice ;). But i posted the pics cause i wanted to say two things....

1. I am still the same, so threat me as the same. You might not notice the difference in my weight (i actually don't notice it in the pictures). But i have lost weight... how do i know? Now i can use jeans didn't fit me few time ago, plus... i see my legs, and i see then thinner. I mean.. i don't watch my legs often.. but one day i was wearing my socks and though... : "???? there is something wrong.... i feel my legs are getting thinner". Ahh and i don't have much belly now, Bingo!! Just don't be afraid. I am not a mummy yet.

2. I know what many of you are thinking. "Do i have aids?". And i have a comment for that... "why do you ask silly questions?, who told you i had aids?". I mean... i got fever and diarreah and still have it... but why everyone in Ecuador and perhaps in other countries think immediately in aids?. It is silly... man i could have got flu!!! the non curable illness? could be cancer. What if i have flu and stomach cancer? or brain cancer and diarreah cause i ate something wrong. Or what if i have grass liver... or what if i have aids?. Plus let me clarify you... it would be strange if i have aids right now... first i must be HIV + (HIV poz). And after several years i would turn into an aids living people. So please... DON'T JUDGE. don't be paranoid... and i am not talking about me... i bet if another friend tell you he is sick with something else... you immediately thinks.. he has aids!!. And the worst is that your thoughts doesn't help, cause you start gossipping... and the person can have aids or cancer or stomach infection... does not matter... the question is... do your gossips help? Answer is NO.

Really silly thing, but.... what if? what if it is true? what if i have aids? Or well... to say it correctly... what if i am just diagnosed HIV +? Would it make a difference? would it be more scary for you? would you love me more if i had cancer and disappear or be ashame of me if i am HIV +? What such a big difference might be? Tell me. Cause HIV or cancer or arterial hyper tension or weakness in my heart they are all serious illness and some of them have no cure. So whatever i have... shouldn't you love me just the same? shouldn't you stop gossipping with your friends about a friend who is very sick with none knows what!!! That's the reason why i haven't said what i have in my blog, that and because i am still not ready. It is my right to take my time to say it, OK?... that in the case i ever want to reveal it. So if i don't want to say it... then please stop gossipping.

These days i have learnt and realised how paranoid we all are and we can be... plus.... i have realised how our minds flies... and our moths too. And there is no help in that, at all.

Change topic OK? (didn't want to sound like a father lol)

Well, with my new situation, and my current challenges, i have found more motivation to stay alive. My goals that i though i could never get them... are now priority for me. Sooo.. university is coming back soon!! when? i don't know... i have no money to pay it... but something will happen and i won't die without having my diploma. Not that i will "die" for it (Lol these days i am so fond of black jokes Lol) but it is a goal. Also, i want to have a company, i am planning and thinking about it, right now i have some adds in MercadoLibre which is moving ok but i want to build up a company and i will make it. Another goal... go back to Russia... for long or few time.. i still don't know it. It all depends if i find medicines for my illness there... but i surely want to go back home. And home in my new world is placed in two places, next to my mother...and back in Moscow... in the middle of the long, cold and white Russian winter.... damn... how much i miss it.. one of the synthoms of my illness is that i sometimes have high body temperature... so Russian winter would fit me so right!!

As i said, all in my work is OK. I keep on working and none there knows i am ill, since i am not a danger for anyone than myself (if i don't look after my health).

Sentimentally i am alone and not waiting. Let's say... stand by period. Some people might want to date me right now... but i still don't have answers for this... so... i play around and date none. (i should have tried that before Lol). Emotionally and as a part of the ... acceptance process and resignation... i have mood changes sometimes.. don't know how often... but i bet you all have already realised about it...sometimes as i go into my feelings and emotions i yet find confussion... hey.. it was a big shock. Give me a break!! I continuosly fight among "the lost and its sorrow" and the "need to go forward and say all will be ok". Can you see the process inside of me now? hope you can put yourself in my shoes for a bit... and perhaps you could understand me.

Physically, in good shape. Only one stomach problem and normal synthoms of my illness which are not bothering me too much. I am thinking in going back to workout... perhaps running and perhaps swimming!!! oh yeah i love it!!! I wonder if i exercise myself that could make me thinner yet... but Dr wisdom will answer it tomorrow. As for the rest it is all OK.

As for my devastated world.... it is all alright. It is all full of ruins in my life now. But sun is shinning in my back. And the most important i remembered today is that even in the darkest nights... there is always a full moon. Which was God's sign to remind us... there is always a chance for light to shine in the middle of the darkness... and show us the path back home... may that home be the usual or a new one as it is my case.

I am planning in rebuilding my world and i am slowly doing it, first... was the acceptance.. the acceptance i lost all. The hardest was to accept i lost myself. Or at least the old JuanCa. I think i lost him. It was my fault. So i felt guilty about it. For you all my friends i am still the same... same nice guy... but for me... i am different. You won't understand it so don't force you Lol.

Once i accepted the lost.... i could spend few time with my personal sadness... few... cause i am not so much up for crying. But i have done it... few... sometimes reading other's blog... sometimes daydreaming about those old times when i was totally healthy, sometimes while looking around and feeling envy... envy because of thinking everyone around me is so healthy...and i am not.... and sometimes i cried while thanking to God for choosing me to face this... because i can now help others and give them a hand and a word of encouragement, like i did with you all before. One of the things i discovered with this illness... is that none can best understand someone who is ill and knows will die... than a person who is in same situation. There are several of us in the world and not all of them are lucky to manage the heavy weight on their shoulders, so i guess God needed a bit more of positive people in this side of the illness to help others.. and i am really up for it. It might cost me my life twice to be in this side... (as it already cost me my old life)... but it is a work that is worth doing it. I discovered a mistake in me right now... i haven't cried... i mean really cried. I have wanted to... at work, while walking downtown... in front of my computer alone... but i haven't done it. Just few tears dropped from my eyes..... God damn... i haven't cried... in any moment i will have to... i will have to let the tears inside flow. Perhaps alone....when i wont be afraid of letting me fall one more time.

With the acceptance of the lost, comes the assimilation... and assimilation sounds like resignation too... and resignation and assimilation gives you in some cases.. self forgiveness... at least in my case it did. And i thank God for it. Like my psychologist said.. "Listen... don't blame yourself cause you were not going through live looking for ways to die... that was not something you were looking for, it just happens... just by chance... it was in your path anyways... you don't have to blame yourself about it.. it is not your fault, nor your punishment... it is just a situation that occurred and that's all". Claudia my psychologist is really wise and so smart too. (and i never ever liked psychologist nor visited any... but she is really great, have been a big help).

Something curious... the devastation was so big... that i still cannot guess all the things i have lost... i know the superficial and evident ones... but while i walk more and more over the ruins this illness left in my world... i discover something new i will miss of my old me... and i feel sorrow again... and it hurts...and then i wonder one more time why this happened... and then... seat.... let the sorrow touch my heart... and i suffer... feel like crying... but i don't... and then i rise my face and accept it, and the whole process comes again. Thats where in the process i am now... after assimilation and acceptance i see a brighter world and that motivates me to change it. Lets re organise this i say... lets make a new world. I am experienced in this...AIESEC taught me, Russia gave me the strength... and life complemented with another lessons i will need for the rebuilding process that will come ... soon i hope. I still have to clean some of the things around....and sometimes i feel desperado about it, thats why i told the two AIESECers about what i have... cause the moment they asked me... i needed to explode, to scape from the ruins...needed to say to the world this happens to me. Desperation is still part of the process... i discover i need to talk, and surely i need to write. Don't talk to me about poems... one cannot make poems out of this... or perhaps yes. i haven't tried.

This is what i have to say at the end of my first week with a non curable illness.... you might have expected more clarity and less confussion in my thoughts... but you don't understand me. It was my world that faded away.... it was my life. I admit even myself though that after a week i would be ready to see everything different and more clear.... and after writing this and reading it back.... i accept a week is few time to overcome this. I am still human and i need to accept it. Accept it you too, please.

Tonight full moon brought me peace, to keep and stay in my new world and to be eager to have a good nap tonight. Sooo... i gotta leave you. There is so much to do tomorrow with my first day at hospital. That will help my world to go back to be the same... not in shape...but in power. My new world will be full of power to face everything... if i lost my life and myself...the old ones. What is left to lose? NOTHING!!!- Soo once you touched bottom line... is when you start to go up. And my life will start to go up soon. Don't worry about me, let this process be what it has to be. I feel good, i thought that i wouldn't... so good!! so good!!

kisses and hugs.

Labels: New life, same illness