A music video for ALL: to those who are there all times

You will need to listen and watch this video a couple times. The words matter. It is one of the videos I wanted to make, this is what I can do now, which is better than to not do at all.

I had wanted to thank Linda and Cheryl with Like a Ghost by Glass Pear. The words, both melancholy and a stripping away of masks showed me how over the years, there have been two pairs of hands physically holding me and helping me. Because of them, I was able to truly LIVE. They understood what it meant for me to hike the rainforests, see the beaches, and ignore the danger signs. Taking risks was a gift they gave me. Linda said watching it, “You have a luminous beauty, but it is because of how ill you are. People can’t live, looking that gaunt, for long.”

I sought to show the face I see when I wake up from passing out, and who gets me to places where I can dance, box, play badminton, and hike over impossible obstacles of roots and rocks. And who helps me demonstate the love I have for her and so many.

It is about them, but because the voice of the singer became my voice, the video is speaking for me, about me. When I write that I am alone it is not to insult or accuse, but to share my feelings and exeperience: what my daily living and emotions are like. The number of people most individuals are greeted by in a day of work, going home, out for dinner, meeting with friends. To see and interact with the people others see in a single day, now, in my condition, it might take up to a year. It isn’t pity, or accusation, but part of what is happening to me, just as Linda observed how people avoid taking pictures of themselves when they are ill. As the video progresses and I go deeper into the experiences of disease and survival, Linda and Cheryl were who were, in all physical states, watching over and who, with others, gave me the gift of a mental and physical space for joy and the assistance to fight back, in attitude from sticking my tongue out, to action (funds gifted I spend on the wooden stamps in the picture, on travel costs, on showing love back). I will never be able to repay Linda or Cheryl in the life they sacrificed in giving/gave to me. They do less, have less so that I can do more, have more, try more, risk more: and they do it knowing that I will die. There is no 'investment return' to this, just being there. I can only hope they understand the love I have for them for joining me on every adventure.

The video show how people go, and they have, those who wrote me and write no more, who promised to be there to the end and then moved on. I needed affection and interaction but the friends I have aren’t human. Linda and Cheryl saw that desperatation to give and receive love and so I have cats, and squirrels.

“Where can I put my faith?” the song asks and it is a question, the daily question, as my helplessness grows, makes life like lying on melting ice over deep and dark water. And so my fear grows. Linda watches and wonders what I have secretly wondered, 'how can I be so open, and give so freely of my heart and my life; to be hurt so often, in physical pain always and yet go on?' Go on when so little of thelove is returned?

If I am a light, or I have love, it is because, like our sun, I am literally burning my own core to make it (or as I start to sputter out, Linda, Cheryl or others at times pour a bit of their heart into mine).

In the last scene I am lying on the floor. I told Linda that in one way it is about fighting, but in another, it is saying, I have fought, and fought, and tried as hard as I can, and I can’t anymore. When you look at the picture you will see I have nothing left. Linda said, “And you are alone.”, noting the room and thinking of this last week. The song says, “If you are real, show me now who you are..”

I have had joy, and risk, and falls, and contentment, and now, with minimal energy (yesterday it took 48 minutes to pee) as part of what seems a withering decline the song articulates for me, “How can I love without grace?” All those individuals, whose voices are now silent, not five, or ten, or a dozen, or a score, but dozens and dozens, of those who I love and yet, in some way, I was not enough for them to keep caring back. With Linda we sort and remember how that this person loves that, and that person loves this and all special things found and given and all we shared, emails, pictures and letters and now there is a descended silence. I love them still, but wonder happened, or what I did to make me untouchable? I lie exhausted from struggling, and alone. I thought, that maybe there were some who, as I changed, didn’t know what to do, how to respond, and moved, like my parents, to what is a safe distance for them. Three have said they can’t stand to watch what is happening and going to happen: watching the pain hurts them too much. There are those who have shown love far beyond what I deserve, and those, heroic, who watch and stay in spite of the fear, of mortality displayed. But those silent individuals, I miss them, I long for them and the connection that...stopped.

That may be heard as accusations, but please see that with my words I am only trying to say this: I am scared, so scared, and alone. I fight every day, alone, and often long into the night. I am on six pain medications and I don’t see how much longer my body can hold up. I do sit ups and push ups and I fight how I can and when I can but…..will there be love? Can I believe in more than pain and that aching longing in these dark days of fatigue, exhaustion? I acted believing that love, that family, that commitment, that caring showed in ways that exposed me, left me vulnerable would help others to hold my hand, face their inner fears and battles to be here.

My rabbit Eiki Eiki I hold is one Linda bought for me on a 'Tender Love' day, Disability Dax, who tries hard but is not always that adept is me, but he has an exposed heart: I got him to remind me that 'heart' always trumps 'do'. Miko, my uke cat who is always at hand in my bed was given by Wendryn, and Raccoon’s Catbus takes me on adventures in my dreams. And above me in bed, on a shelf, peeking over, is a cat named Pounce from Cheryl, ready to jump. When I am at the computer, watching a good show, Rabid, my large hand sized plush squirrel from Raccoon loves to watch TV too, and is there to hold in the tense parts. Otto the Otter from Susan guards the living room couch, where I am move to when Cheryl comes. These are the ones who watch over me, who know me, and I know them.

I am embarressed to say I did not want to publicly thank these because others might feel bad. Yet these are the one who see me, meet with me, take my calls and emails. I say that because now is when that matters: so ill and in fear, I am a child again and these plushies are the comfort I have in this new world I don’t know. Some hours and days it is like when I used to wait for my father footsteps returning from work, all I can do is hope. With these 'friends' I hang on and wait, so that during a 'good hour', or 'good day', I can be more, but sending postcards, or gifts, or emails, or blog posts is only possible because I have been able to hold on. Now you know how I hold on, and with who.

Why I have no spoons, and what you CAN DO.

This post is simple: I need/have to go from the girl on the left to the girl on the right, and I need your help. Read the post to understand how you can help and why I need the help NOW.

I’ve been sick/disabled too long I realized as I finally ‘understood’ what being able boded is like (wow!). So I am going to try and reverse engineer and explain the difference between MY condition, Chronic Disabilities and being Able Bodied.

See I was staring at this bottle of bath salts for several hours (when you have to move stuff along through the skin, taking a dump takes a bit longer) and the bath salt bottle is 80% full. And I realized, “This is what the energy of an AB is like.” And you know what is amazing? They can use it, spread it here and there, do things literally 10 to 20 faster than I can (like leave the house in 4 minutes compared to my 105 minutes) and EVERY day, it get completely refilled again. Amazing no? And this is the kicker, the MORE active they are, the MORE energy crystals they get. That’s right, empty it completely and it ends up FULLER! Wow. To me only two years later, that is pretty amazing. Able body people have a pretty sweet life.

Now there is spoon theory, in which you accept your illness or disability and that while other people get say 100 spoons, you only get 40. So people have to learn how to stop trying to keep up with the 100 spoon people and live with 40. And if you overexert yourself, and use like 45 spoons, you will pay a penalty and have to be at 30 spoons until you work back up to 40 spoons again. That is for STABLE chronic conditions.

Okay, now you have ME, and I have not just one but MANY degenerative conditions. And this is important because according to the books and most doctors I will die. But unlike cancer which progresses in a particular way, changing cells, taking over the lymph system and overloading a crash in a time which has been seen thousands of time (but there are still exceptions), my progression is so far, random. And so, if I don’t “GET” the difference between ME and the “Spoon Theory”, I will die. I have not rested. Part is because no one has adjusted to me being sick or broken on the level that I am: so from home care, to Linda to others, I am asked to expend energy which I realized would put me in the hospital by the end of the week (not that I wasn’t helping by working until 5:00 am). It is hard to rest when you look the same. I said earlier this week I would end up in the hospital, and today I came within a minute or so of doing so.

Okay, AB’s get 100 lines of energy crystals, and person with condition X gets 40 lines of energy crystals and when they wake up, they have those crystals magically reappear. I get 20-30. The problem is that in Spoon Theory, when people allocate their spoons, whether disabled or able bodied, they don’t have to factor “How many spoon to keep breathing?”, “How many for my heart to beat?”, “How many to convert oxygen?” See, in Spoon Theory, which is useful for certain conditions, it is assumed that BASIC functions will not take energy. So breathing, heart beating, ability to circulate blood, drinking, swallowing, eating, are all not counted. But they DO have to take control of their life, making conscious decisions because those have real consequences. So the question becomes, “If I go to the store today that is 15 spoons and making dinner is 10 spoons so I need to rest two to three hours after each activity.”

With my condition, I don’t just have MSA, or hypothyroidism or anemia or a currently unidentified autoimmune disease but OTHER diseases too. Plus I have, thanks to the destruction of most nerves, no feeling. I used to be ‘in tune’ with my body but now, until the time when my heart stopped beating (as it did today) and I said, “Something feels wrong” before slumping over, I don’t have a clue that golly, I must be overtaxed. And due to the extreme nature of secondary diseases like Raynauds, it is both unclear to caregivers what has caused me to slump over: Have I stopped breathing, has my heart become so erratic that it doesn’t beat blood to my brain, has my vascular system decreased, or have my lungs stopped converting enough oxygen to feed the brain, or am I simply completely exhausted? Actually, right now, typing this paragraph, I slumped over, and it was determined that due to one hand being blue, I needed oxygen and now I am on oxygen. I woke up and continue.

So what conditions need to include counting ‘spoons’ for simply TALKING. I do. And if I use my 30 lines of energy down to eight, well, I might still be able to do stamping on postcards, but my heart starts get weaker and weaker until I have to be hospitalized. And if I talk in the hospital, alarms start to go and they have to stabilize me again (that really narks them, having to do that four times just because you want to tell a really good story!). And after a two hour nap, rest and then eight hours of sleep I might have.....14 lines of energy.

And of course, at any time a seizure (one of the only symptoms where care givers know what it is: hey, she’s having a seizure! While my arms turning purple up to the shoulder or hands turning black, can be up to six different reasons) can come by and steal half of my energy. Or my heart can go out of whack because the autoimmune disease in my brain decides to attack that part, and I lose energy. So there is no “spoon” theory. Right now, there is survival. There used to be a time where exercise used to give me a boost of 10% over the course of the week, now it just takes 20% of my energy for the next four days. Maybe if I can figure out how to get back UP, I will have a fighting chance. Because if I don't then I won't. It is really that close now. It is change and maybe not die (now). And I need help.

Right now, being absolutely still, not answering emails, not doing blogs, just watching DVD’s on my computer is actually the most healthy thing for me at the end of the week while a well rounded schedule of going out and doing exercise once a week, a bit of wheeling and living my life on the computer, actually is knocking me down. Now, I am NOT going to give up all my contacts and my friends, because I believe I can slowly get a bit more strength AND put a limit on my computer and other activities until that occurs. I HAVE to accept that I am now the girl who sits buy while other people do things for me, like it or not. Becasue we can’t tell how strong I am because I look pretty much the same, except now; not I not only am I NOT the same (as last week, last month, or even yesterday in terms of energy and safely staying alive), I am in CRITICAL condition. This you need to know.

Today I went out and fed squirrels and I look, well thin, but like Beth. Great, yeah!?

No, not great, I got 2nd degree frostbite and in trying to warm up my hands, I passed out, stopped breathing and my heart got very, very weak. The problem is, do I have enough energy to leave the hospital once I get in? I was revived and given liquids and oxygen in case it was low oxygen, low lung conversion, anemia, or a few other things. Since then I have slept 3 hours, and eaten twice and passed out twice more, had numerous seizures and I still look ‘normal’, it is just, if I talk for more than three minutes I will pass out. I will become emergent (in fact right now my fingertips are black and I am ON oxygen). And tomorrow…I will be weaker. When I am nauseous it could be anything from lack of liquids, to vascular system out of control, to inability of blood to reach inner ear or even anemia. Care giving me, and being me is a chore.

Ah ha! And this is where you come in. Because I have decided with help from Veralidaine and Wendryn come up with a plan called something like: The Helping Beth change her behavior, outlook and not die plan (THBCHBOANDP for short!). Basically I need a few volunteers who are willing to take on individual aspects of regulating what parts of me CAN be regulated from afar. The two words I am told for caring for people in my type of condition are consistency and stability. So, I need to change within a framework that is consistent and stable. On my end I am TRYING to convince my care workers they aren’t prison guards but CARE workers. I am working with Linda and with the worst offender – ME.

But what I need are a combination of sponsor and older sister/brother. Someone who HAS the number of spoons to keep an eye on me regularly and wants to. Admit it, deep down, you KNOW that if you just had the chance to tell me what to do, my life would be better! Haha, you older sibling you! So you can either volunteer here in comments but only if I have your email, or email me because we will need to email each other. Or you can email me. So for example, I am working trying to keep my life stable, while working to rest more and move toward positive emotions. So, and this is going to be not HARD but a little bit of commitment, sort of like feeding fish, but luckily there was SO much boring medical stuff no one will get this far down to hear me being so selfish as to ask for help for a subhuman like me.

For example, I will need individuals who are willing to send me post/mail at a REGULAR interval (consistent and stable!), whether that is every two week or every month, it can be put on a calendar and I can hopefully learn things like ‘anticipation, excitement, looking ahead.’ Yes, this is an actual need.

Another thing I would like to do is spend 30 minutes at least three times a week writing thank you cards or sorting postcard project postcards and stickers. I would like to do that as I have a backlog in my brain box (how I know things sent to me, put in a box in sequential order), and I need to organize the postcards. BUT, if I do too much I will get exhausted. On the other hand, it gets me away from working on the computer. So I would need a sponsor/older sister who would email back and forth with me and find out what I have done, and have I done my 30 minutes away from the computer yet this week? How many thank you cards have I done? The same is true about reading, I want to try and just READ, or at least read manga if books are too hard for 30 minutes three to four times a week. And so I could use a friend, a sponsor/older sibling for that. But see, this means you have to be consistent and stable too. If I miss a week, if I lose contact, I get lost. I am hoping to build up pride in my work, reinforced by my sponsor.

People asked what they could do, these are some things that need being done. By the way, Linda’s one cent plus shipping romance novels (duets: two books in one) have all been read so I went through with her and added some more; if you want to give the main caregiver a break, that is a need, which is quite inexpensive. I also need between four and six people who are willing to commit to $20-30 every 2-3 months. See, I get postcards and supplies from David at his online business for funding the Japan Cat Project. I make an order of about $25-30 every two weeks, which is between 3-6 shitajiki boards (pencil boards) which I then give on as gifts. So if there are some people who want to commit to this, as long as I live (or get rich or find some amazing job), then I will know that about 25-50% of the postcard aspects of the postcard project costs are taken care of. So that would mean four to six people who say, I can do that, and then we can email and arrange a schedule and either use paypal or Amazon.com gift cards. I’m sorry, I have tried not to ask for money on this blog because that is not what this blog is about. But it is about my health and I don’t have the heath to do the chasing online for anime postcards anymore; this man has volunteered to help me. If I can make that CONSISTENT and STABLE, that will reduce my energy, energy I need for breathing and staying conscious. By the way, the same is true for a sheet of 42 or 94 cent stamps. We are okay on .27 but anything oversized needs a .42 cent stamp, and if someone wants to send a sheet once a month, that is a real need, as are all the people in Australia and New Zealand, South America, Africa, and India, Asia and Japan. So if someone wants to commit to a sheet once a month or once every two months, that is a need that I don’t need to worry about. What I am asking for is a mixture of older sibling, sponsor, caregiver and in somecases guardian, keeping a kind and gentle eye on me. Not to run my life, but to help me, as limitations increase, including my mental ones, to live as well as I can.

If someone wants to work with me to ask me what I watched that day, or how I rested, that is something else I need, but that might also include involvement on your part. Same with things like, am I drinking enough liquids. Look, no one wants 20 nags coming after them every day. But what I do want is to change how I live my life with a group of friends who care about me and are there to hear a few lines to say, ‘yes, I did have my two gatorade before my nap. How are you doing on your project X?” And at the same time they commit to $5 a month to go out and have something NICE to drink like BEER instead of always gatorade. That’s a sponsor. If the money is an issue, I can actually SEND YOU the money. But see, I won’t remember this plan in three days. You will. So if you tell me I have done a good job and you are sending me $5 for going out for a beer because I drank all my liquids that week; that will be something to look forward to (and I won’t know it is my money by that time!). IF the money is the problem.

The problem is I need a fast life change which has to be intensely monitored but as stable as possible. So I can rest but also start trying to change and have joy. I can’t change one life aspect without the others. I found that today. I went to see squirrels and I passed out many, many times, and was in bed. So going to see kitties is a plan, but it isn’t enough. I need more, a complete life change so that I can go see kitties in a week because I have had friends watching over me, to help me rest enough, relax enough, feel human enough, learn to have excitement and joy to go and see kitties. The health, the emotion and the rest all go together.

I want to live. I am asking you in a concrete way to help me do that. And if you have additional ideas of how to improve this idea in various areas, I’d like to hear it! As for me, as soon as I am done this, I am doing postcard matching! Don’t worry, I sit still and as three of us we go over the names and find the best postcard we have, put the label on and get it ready for stamping. Because this is a cold and hard winter. And people need to know they are cared about.