Monday, April 13, 2015

One last push...

Today I swore I was going to clean up a big, huge mess in a room I use for my creative self. I REALLY need to do it, as it is literally a walking land mine. I have almost hurt myself more times than I could count at this point. And each time, I grumble to myself, get pissed, and keep going. 

Every time I go in there I get diverted. I think it is the pressure I feel to find something, anything that will make me money. Part of it is that it is hard to spend time doing something that doesn't "pay." Another  piece is that it is hard to organize stuff that I have accumulated. My brain just doesn't work the way it used to. 

I used to be such a good organizer. Now any time I have to think about something, it can be a real struggle. It also doesn't help that often organizing means having things to organize in, and those things cost money - which I don't have.

On top of everything else, today was a hard day. I was really restless last night, and really tired when I went to bed. My mood is not the best. I thought things were moving with food stamps, but they weren't. So now I have to spend time and energy trying to get that going again. 

I got a "love letter" (2, actually) from Disability today. I can not help but wonder how many - if any - of those who work there have any clue what dealing with cancer is like. I am sooo not happy about having to deal with their paperwork maze. It is actually part of what torpedoed things last time I tried to go this route. Thankfully, at least, the timing of it is likely the best it is going to be for a few weeks.

On top of everything else, I now have a date for my first art show in May. While I am excited, the preparation is extremely stressful. I can be creative, no problem. But having to concern myself with administrative details is more than a bit overwhelming.

Dealing with cancer in many ways is a freaking full time job. I really don't think people realize all that goes into scheduling treatment, traveling for treatment, and treatment itself. And then there is the living of life in the midst of it.

Disability asks questions about what things you are capable of. I am pretty much capable of dealing with, and doing, almost anything, just not all the time, and sometimes only a small percentage of the time. I do only what I need to do - when I need to do it. 

I am wondering if I should share more about what doesn't happen here, but quite frankly, I am a bit embarrassed to share. I hate the idea of telling complete strangers at Disability these things, but they need to know, if I have any chance of getting approved. Maybe at some point I will share with you, too. I sometimes think I should share more about this kind of stuff, as do many seem to think I am just fine because superficially I seem to manage.

I am also now remembering that there is someone I have been wanting to call for days. She didn't get a call today, either. 

Another question Disability asks is if I finish anything. I am all over the freaking place.  Yes. There are things that get done, but there are so many things left dangling - just ask my frustrated friend. My mind loses things all the time. The phone rings, and I forget what I was doing, and go do something else after the call. I go to the bathroom, and forget what I was doing, and go do something else. I am doing one thing, and suddenly am so tired I need to just stop - and go to bed. I put food on to cook, and forget that it is cooking. I pull some food out to make, and then forget that until I go to make something else. I leave supplements on the counter so I can see them, and remember to take them, but often forget any way. I go downstairs to get, or do, something, and once there forget why I came down. I don't always remember what I ate earlier in the day, or even, if I ate. I plan to do laundry, and then forget, day after day after day after week - until I have to do it, and even then it can still be a day or more, and inconvenience and frustration, before I remember to do it. I do laundry, and then forget that it is in the washer/dryer. 

The list just goes on and on and on. I am often grateful and appreciative of the things that I DO manage to remember. I often find that if I do something immediately, it has the best shot at being done, otherwise it can be forgotten all together - or until something else triggers the memory of something I needed to do, at which point I better do it right then, or risk losing it all together the minute I get distracted again - which could only be seconds away.

Another month, and I will have been dealing with cancer 3 years. THREE. It is fortunate that I am still here. At the same time, the trade offs cost me in all kinds of ways that most have no understanding of, and maybe never will.

I am so tired right now...and I mean that in more ways than one.

Every night I go to bed, I am fried. I get to the point I can't even do just one more thing. I may try, but it often winds up being a big, huge mistake. I am grateful when I wake up and find myself a bit recharged. It often takes me hours to get out of bed, but once I get going, I can usually manage to get some things done. Of course, it is never as much as I would like, but at least it is something. 

But I have been pushing so hard and so much, I really feel like I need a break. Ironically, perhaps, some people don't want to pay for a "vacation" for me, so if I even hinted about going anywhere some might not want to help me in any way. If anyone needs a vacation, it is someone like me who is dealing with this stuff, and has no ability to escape: no financial resources, and has treatment tethering them. 

Like so much else, I really think most people just don't have a clue. If you thought your life could be significantly shortened, would you want your last times to be mired in dealing with your illness? My guess is no. I would also guess that if there was kindness of strangers that would/could help you escape the bleakness of your reality with a "vacation," you would not only welcome it, you'd act on ASAP, provided you were still well enough to do so. 

That is another thing, too, what some may not consider is that if life's book was coming to an end, opportunities to travel and do things might also be coming to an end before that point. If one didn't go on a vacation now, there may not be a later. For those who are more likely to have a later, it might be all too easy to begrudge another a vacation when they are unable to do that for themselves. People inevitably make comparisons, but they are not always calculated "properly."

My head is swimming. I really must go to sleep. I am struggling with these last words. I am getting to that point that I really must stop.

One last thing, though...please check out Patreon.com/jolope. Then please become a patron if there is even one thing you like and appreciate about me/my work. $1 is all it will cost you. JUST ONE DOLLAR. If you have never contributed to me, please consider taking this opportunity. Are you going to miss that dollar? Really? Probably not. And if you care about me, it could be one of the best things you could do for me. 

Are you a total stranger? Well. I guess you don't know if I am for real, or not. But you have probably lost more than a dollar in your life somewhere. You have probably wasted more than $1, more than once. Consider that your kindness to a complete stranger could be an investment in something good. 

Yes. You'd be speculating, but it is worth it. I am worth it. Don't believe me? Spend some more time to get to know me, and what I am about, and you will likely see a person who isn't that much different than who you are, or would like to be. I may be dealing with cancer, and you may not be, but we share a very human experience, and I am asking you to please be humane, and help a person who very much needs it - and hates to ask for it, more than you will likely ever know. Thank you.

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