No Substitute

In the fear and the fight,
frustration, penniless desperation,
the what I need but can’t afford deafens, blinds
and I forget to remember
I must remember
remember the most important things
cannot be bought with words
begged for, pleaded for,
yet I have them in abundance;
Good friends, gifts of strength, and…
And while I still need what I need to survive
while I still need what I need to come home
and while some days such as today
I am terrified and look for every bit of strength I can find
not to show it
In the fear
And the fight
I must never forget that I have something
for which even the strongest of herbs, tinctures
or treatments
have no substitute.
I have you
I have your love
and blessed with both
I hold them close, and dearly…
Though the love I try to give back
as much as I can
even through the ever-present fear
for if I don’t
don’t return your love
there is no reason I can find inside
to continue to fight
to stay

kSf 4.15.11


If Only I Had Known… (maybe)


They released him from the hospital today, and Salvador’s room was filled with flowers, friends, and family – the people who were closest to him n this life.

Salvador is the person who I tried to say was put in the ICU Unit a few posts previous using the minimal space I had on Facebook, and is an incredibly sweet, quiet and somewhat shy person who, when we talk, was/is so easy to make laugh. I forgot what we were talking about now one time, but it was just something goofy, and it was so much fun and heartwarming hearing his laughter and the way that it grew that he brought out extra levels of goofiness in me – something I greatly needed. Need.

I remember on occasion when we were the only two out on the smoking patio, him with his Calvin & Hobbes comic book, me with my notebook writing down certain things I tried or tested that either definitely helped or didn’t seem to (man, I’m becoming so much more aware of every little thing that goes on with my body!) or wrapped up in my phone doing as much research as I could on the bittyscreen – mainly forwarding web sites and pages to my email that looked promising or trying to find something that I know does work just a bit cheaper but just as good. (Alas, it mostly seems like you truly get what you pay for, in most cases. I’ve had a little bit of luck and keep looking, keep (intelligently) testing. I used to love the occasional chuckle I heard from him as he read, it brought a smile to my face every time. (After all, who can’t occasionally chuckle as they read Calvin & Hobbes?) Salvador’s happiness eased the gravity of what I need to do.

This post is kind of wacky – mixed with both past and present tense, mainly because I unfortunately don’t think I’ll see him out on the smoking patio again. I learned that he was admitted to the hospital with essentially the exact same thing that I have, ascites due to a screwed up liver. This I didn’t know until I asked one of the nurses here while he was in the ICU. I wish I had. He unknowingly ate all the poisonous food here, didn’t know how to help his liver, and things suddenly took a turn for the worse. I don’t know the specifics, but maybe, just maybe, there might have been something I could have done to help.

If only I had known…

Like me, he was admitted to Maitri simply for respite care. When he came back from the hospital he was switched to hospice.

There are times when I’m feeling good (but still have the damn tree-trunk legs and distended gut) that the reality of my situation leaves me – I neglect to take a dose of pills (tons of pills), cheat a bit more on the diet if it’s something that actually looks good, and rationalize it brilliantly – after all, the less pills I take, the more of their poison I eat, the less I’ll need to ask you for help – something I truly loathe needing to do over and over again, but I double (or more) the dose on most of what I take, therefore run out much quicker than the recommended daily person. I can’t neglect taking what I need for a few days, even if it’s close to the end of the month. I need to buy my own food, and keep testing different things. I need to keep a positive attitude but still be afraid, and KEEP FIGHTING, as there is so much more I want to do in this life; so many dreams, so many roads I haven’t been on, and if and when I win this fight, so many people I could teach how to do it as well. So many people I could help. So many people I could make smile again – so much more I believe I was meant to do. I haven’t lived through so much just to quietly die in this friggin’ bed. Raging against the dying of the light, baby!

I am insanely grateful for the occasional help I receive, and hope that I’ve not neglected to send out a personal email or named you in a post saying so to those who have assisted, as it is nothing I could or will ever expect or take for granted – but the bottles empty quickly, the testing needs to be done, and I need to keep purchasing healthy foodstuffs to keep my liver as un-compromised as possible; I need to do everything in my power, which includes asking you, because the money that I have left over after I receive my check each month flies out of my account at the speed of the interweb, except for the occasional cheap toy or tool, and cigarettes to pass the time here so I don’t go mad. Small, cheap, little things…

Sunday, 8:07pm, April 3, 2011

The nurse came by to let me know that Salvador has passed from this life at 8:00 – of liver failure. His family was here by his side, and he was sleeping when he passed.

I’ll miss him, but always remember him as I look up to the night sky and maybe, just maybe, see two more stars shining down. I know without question that he will love Bean…

Monday, 2-ish AM

I’m tired – sent out prayers to him and his family and slept for just a tiny bit.

I’m scared, as he died incredibly suddenly of the exact same thing that I am fighting, but that only makes me fight harder – and straight up, I need your help to continue this fight, I need your help to WIN it as soon as possible.


Any money sent today (Monday) will go directly to healthy food tomorrow so I don’t add to the poisoning of my liver, and/or a new order I need to place for herbs/supplements. Every penny will help.

If you choose to send only once, thank you, extremely much, as it certainly does help.

If you choose to and are able to send something monthly, please do, as that will create much less stress of having to ask everyone, all the time – and just hope. We can figure out when would be best for you, and I’ll most certainly remember who you are.

Once or regularly, everything helps, though please don’t presume that I have wads of cash coming in from the community, as I certainly don’t – otherwise I wouldn’t be doing what I can’t friggin’ stand and asking for your help. I mean hells, I’ve been dealing with this anguish for three years before pretty much anyone knew about it, not wanting to bother you with my problems.

Please help today, or if possible let me know when you can – and if you can do it once or regularly. I don’t expect it to last for more than five, maybe six months as my body remembers how to heal – and once I’m out of here, I won’t need to pay the fees anymore. I won’t have to ask you to help keep me alive.

Thank you.