03 June, 2010

don't take my energy...

Some goddesses are puzzled by this...like me...

I am, as those overly PC people put it, "differently-abled." I've railed against it, against my genetics, against gods, and all involved.

Most people don't get it because it's invisible. Over the years I've commiserated with others in similar situations because they too, understand...that's why I'm frustrated and get pissed off when they blithely steal my family's spoons. Yes, I consider it a theft. Because otherwise I was in an untenable situation and would look bad...

So it was that I use energy I and my family didn't have to waste on somebody that KNOWS how little we have because they are in the same boat, or look like awful shirkers who leave these poor people stranded alone to pack up all by themselves.

It is worse because my husband has now joined the ranks of the uncontrolled diabetics again (no insurance), with other problems that go with it like high cholesterol and high blood pressure and his sleep apnea. He's losing weight. But somewhere recently he lost his backpack that had his diabetic blood sugar monitor in it, and half of his medicines and of course we can't afford to replace it without insurance. A doctor visit alone to our doctor is well over $200, but it's getting critical.

So I've been rationing his energy, like I ration mine, like I ration that of the rest of my family...others think of it as how many spoons they have to get through a day. It's a good analogy to get the point across. Your energy is finite and people who have an energy reserve don't get that...but people who are disabled themselves SHOULD!

I've had to tailor my family's life to our reality. It used to be what do you want mommy to do, this school thing with you, or a movie with the family over the weekend? A family night? or some one on one time? It was always mommy and always an either/or. Now it's daddy as well, or both.

I ration my energy day to day. I ration my husband's energy. I ration my family's energy.

I even explain to people that we make choices between what we can do and what we can't based on the disabilities and amount of energy it takes to deal with it.

With small children and disabilities we found we couldn't event. We especially couldn't autocrat as we loved to do. I stopped going to most events and my husband went alone to some of them. I stopped cooking at events. We stopped putting up an elaborate period camp. All of our activities got rationed. Saying "no" became a hated skill I had to learn for my sanity and my family's ultimate survival.

We went to few events, even fewer activities because my disabilities made daily life a chore and just living it to raise children took all my energy.

Now my children are old enough to be a help. We are learning how to streamline our SCA lives to sometimes be able to still be able to afford the energy it takes to go to and sometimes even to run events, but I need my entire family's energy to do it for us all to get there and we plan our vacations from the everyday grind of pain and "can't do thats" accordingly. We all pitch in to make it work for our family.

Now, there is a down side that I have found with our love of our new group. My husband hasn't learned the ability to say no, and I find myself feeling responsible for people who are availing themselves of our too finite family energy reserves so that we are left with less than nothing when we return home. It will really mean fewer events for us, that's the bottom line.

I can't allow my husband, who is our only almost able-bodied bread winner at this point, to cripple himself like this for multiple days on our return from what is supposed to be a "fun" event. As a family, we can't afford it. Individually, he can't afford it, health-wise.

I can't afford it, selfishly, when he is my only support for transport, and the only support for transport for his disabled mother as well.

Don't get me wrong. We had so much fun with our friends at this last event, but we knew our limitations, and the limitations of our conditions and didn't even do our normal volunteering. My husband didn't fight; crap, he didn't even marshal. That should have clued people in to just how messed up he was. He went to bed just after dark on Sunday. This, from the man who like the night owl he is, normally helps me greet my pain filled dawn.

He's only like this when his diabetes is messed up like it was this last weekend and the injuries are stacking up from the weather and the packing. I doubled my meds. I'm not supposed to, but I can't pack otherwise, and I was relieved it only took us about 4 hours to pack our own stuff up. We woke up and immediately got to it like we normally do, all of our family pitching in and doing what we can. We even ate as we packed and just got it done. I was thankful to the bit of help we got to fold up the one tent and tote the couple of heavy things I can't lift. It was all of about 10 minutes to help us finish up or so I would guess. I probably made it longer trying to get in the way and bend over myself, but for some reason people kept being concerned I'd faint on them or some stupid sh*t like that. ;D (Thanks Aislin for the assist folding the tent!)

I had to think long and hard why I've been so upset the last few days while we've been recovering and pretty much bed bound. And I think it was so hard because the next 2 hours was spent packing up a camp with only half the people who had shared it helping after they had made an INCREDIBLY slow start to their day and it had put them way behind everybody else. I found it hard to not feel resentment as the kids all sat in the car and Mom in that camp did most of the work, disabled as she is.

It bothered me most because, while I don't mind helping, I expect EVERYONE to do what little bit they can if I am going to be using up energy my family doesn't have to spare, and I felt like my husband and I and a few others were paying the toll so that the disabled gentleman in that camp could overuse his own energy and enjoy himself that weekend. We paid HIS price. My husband even warned him not to pack so much and was ignored and we still paid his price. As well as the price for the non-disabled people riding with him who could have been helping but sat in the car instead for various reasons. They may have been valid reasons beyond getting food; I don't know. I just know that energy was fading fast that would have been conserved if there had been more help and more fellow feeling.

Courtesy requires that people not be able to say things when they are so angry they are being abused and they feel they are being taken advantage of. That is wrong. It is discourteous to us all to take advantage of us by relying on our courtesy and goodwill to do your work.

A two hour drive home took 5 hours because of the stops we had to make to calm the spasms of pain my husband was having ,and I was in no shape to drive because I'd had to double my meds to "help" pack up when I went beyond my limits. I felt absolutely helpless. I didn't have anything I could medicate him with and I was too medicated to drive. All we could do was wait for the muscle spasms in the back and shoulder to lessen enough for him to drive again.

Then he had to race the clock to get home to help a disabled mother try to get a battery for her car working so she could see a doctor. He ended up back out on the road, muscle spasms and all.

So...I need to get this said. I may be seen as the wicked witch of the west or of the local area. But, I did my volunteering in the background and what was within my energy to do at the event, or would have been, based on what my family packed and what we knew we had to do.

I've had 2 eye surgeries in the last 4 months and have been fighting medication changes that are swinging my blood pressure and blood sugar up and down, and I'm lucky if I can bend over without fainting. I make us pack only what we need. My husband didn't volunteer to do the things he loved because he hurt himself helping people a few days before the event and knew that packing up and slogging in the mud would be too much for our family energy to absorb.

As adults we make those decisions daily, and yes, we made the decision to help the pople we did, because their being left behind to do it on their own would have reflected badly on our own group and ultimately, on us. So we made the choice not to look like slackers who had no conscience.

But they, as well, are adults, who have been disabled a long time. Long enough that they should know their energy limits and not ask others to give them spoons. Aislin doesn't have many spoons to spare. I don't have them and my husband doesn't have them to give. We were put in a position to be made to look bad if we didn't and that's what made me upset.

Many people in our group are disabled. We seem to have an overabundance of "differently-abled" who need to steward their energy wisely and, as such, we need to help each other as a community, but we need to NOT count on abusing that help. Because those of us that help are giving up our energy and spoons and future days of being able to take moms to hospitals and go with kids to events at their schools to you too! These are things that have been missed...

I recognize it when I have to ask for help, and I sure don't expect to receive it. I am amazed and humbled by the willingness of our members who can give of their help and do, but expecting the help is an abuse that will see the help drying up and blowing away for everyone.

Why am I cowardly bitching here instead of in an open forum where I can be answered face-to-face, or in a one-on-one meeting where I can address the problem diplomatically with the major individuals involved?

Mainly because of my old nemesis, disability. I can't string sentences together and when I have an issue to address when I am upset the ability regresses even further. My IQ drops by 20 to 50 points and I spend many minutes fighting the fog and being frustrated and losing the point of the whole exercise, and by then, so has the person I'm trying to confront. So I have found that writing, with the ability to stretch it out, find the right word, and ask for the person's feedback, can actually facilitate one-on-one communication for me. It is still just as hard for me to confront someone as it ever has been. I still need to get my courage up so I'm not walked over and then I need to find the words so that I can hope they'll understand my feelings, and not just blow it off as unimportant. Because if I sat down and took the time to draft it out and write, it was majorly important to the future of that relationship.

from the goddess who has been hibernating with her god for 2 days recovering...