Month: July 2019

Bra Ra Ra

tragerstreit9 Comments

In this installment of Things It Never Occurred to Me I’d Have To Worry About: Bras.

In a vague way, of course it occurred to me that it would eventually be a problem. But it was kind of lumped in with clothing in general. I knew I’d have trouble dressing, and understood eventually I would require help. It’s the intermediary stage that is proving to be a pain in the ass. Zippers took a little bit of doing, but eventually I figured out that simply adding key rings to the zipper pulls allowed me to work zippers myself. A little device that looks like a Swiss Army knife helps me with buttons. I worked out a trick for pulling up skirts or dresses down by capturing the fabric between my wheelchair and the palm of my hand to hold the fabric stationary and shifting my body. Makeup gets done two-handed these days.

But bras are tricky. They are fiddly things in the best of times. You have to simultaneously tug and latch tiny hooks into tiny eyelets. At my current state, I can tug or I can latch. You get one. And eventually I won’t be able to do that either. So I’m in this weird in between stage, not quite broken enough to require full-time assistance, but not really able-bodied enough to take care of myself completely either. A lot of days I can’t manage the bra, so I just do without. I really don’t like leaving my house with no bra on, it makes me feel trashy and holy SHIT boob sweat is totally a thing. There are some shirts that I cannot wear if I do not have a bra on. So what is a terminally ill woman whose hands are garbage meat noodles to do?

The obvious answer of course, is to get some help. Have someone else do it. And of course I can, eventually I’ll have to, but I’d rather delay that as long as I can. And it seems stupid that someone hasn’t invented something to cope with this problem. I’m not unique. The situation has come up for other people before. There has to be a solution.

Spoiler alert: there really doesn’t seem to be.

I spent more time and money than I’d like to admit trying to figure out a workaround. There are manufactured solutions for women with limited grip due to arthritis or the like, but they pose two problems. One, they usually go only up to a C cup, and I have not been a C cup since I was maybe 16. Even at my thinnest, I have always been a busty girl, and even normal bras were hard to find in my size. It’s easier these days, but in my 20s I had to shop at “big girl” stores before I was a “big girl”. So your medical device of a bra that only goes up to 38C is just not gonna cut it. Two, they’re ugly as shit. I already had problems with only being allowed to have bras in fat girl beige or white – the alternative is spending $40-$60 each at Lane Bryant or somewhere. (Thank God for Torrid. That’s all I have to say.) But cute or not, they still have the hook and eye closure that is rapidly becoming actually impossible.

There are front closing bras, but that offers the same exact hook and eye closure problem. There are no help. Sports bras are great, but they are necessarily restrictively tight and require strength to get on. So-called adhesive bras don’t work. See: busty girl. They just become kind of glorified pasties, no actual support. And as a bonus, they’re made of self-adhesive silicon which never stays on, or they’re basically stickers made with latex, which I am allergic to. Actual pasties or other kinds of nipple cover solve one problem, but a woman really requires structure when she gets of an age and of a size. A good bra is like an all day hug.

I don’t have an actual solution. My workaround currently is nipple cover stickers and really baggy shirts. Or one bra that I have which I can clasp because it’s too big for me so it doesn’t support well. I have to choose between functional and cute – you make that decision often with chronic or terminal conditions. On special occasions when I would like to dress up, I have to get help. (Again I am very lucky that J was my husband at one point so he’s already seen me naked and it’s not as awkward as it might otherwise be. Again, J is amazing.)

There has to be a better way to this. It’s dumb. Someone invent a magnetic clasp bra that’s strong enough to hold a double D. And hurry it up please, I don’t really have a lot of time to wait.

S-P/A Day

tragerstreit2 Comments

Unless you’re new to this blog, you know I’m an optimist. If you are new to this blog, welcome! Pull up a chair, have a look around. I hope you find something useful here. And oh, by the way, I’m an optimist. I can’t even tell you why that’s so, but I’ve always been. Even when things are absolutely shit, I still believe to the core of me in some way, somehow, things are going to be okay. Even if it’s a new definition of okay. I don’t think it really serves in purpose being pessimistic, because when you’re a pessimist and things go wrong, not only are things bad for you, but you’ve been miserable for a long time up to that point – because you’ve just been waiting for it turned to shit. “I told you so” is a cold comfort. Seeing it coming doesn’t necessarily make anything better. It makes you right, I guess, and if that makes you happy good on you. But the anticipation of misery just makes the lead-up miserable also. Besides, it really will be okay. I know it.

There are those of you out there who call yourself a realist. You’re not, really. You’re just a pessimist without imagination. If you are going to expect things to be bad, at least have some imagination on how you get there.

So, yeah, optimist. Even though the end of my path is set and dark, there’s still a lot of light here. More than I ever would’ve thought possible. I’ve waxed poetic elsewhere and I will again, and again, and again. Because it’s accurate. There is so much good in my life, more than ever thought I deserved, or possible, even. It’s here. I see it. It’sbright and glorious and why I continue to wake up every day.

But.

Sometimes.

Some days.

Some days it’s really fucking hard to see that light. Occasionally the darkness and the unfairness and the all-around bullshit and fuckery that is ALS creeps in the edges and obscures everything until it’s really hard to see anything good. Everything looks like a shit sammich and the world feels awful and hard. And when that happens, I take a spa day. Or rather, a S-P/A Day. A day to sit and think and allow myself to be sad. To dwell in self-pity and anger.

Because I mean, it’s really fucked up. I’m not such an optimist I can’t see how fucked my situation is. It sucks that this disease exists at all. It sucks that I have it. It sucks that I got it so young. I wasn’t even 40 years old yet. You’re not supposed to get this disease until your mid 60s. It sucks that it’s taking my hands, and my joys in life are all to do with using those hands to create. Create delicious things, create drawings, create these words that you’re reading right now. I’ll never make another wedding cake, or draw a pretty girl in a corset, or teach myself to knit, or pick back up calligraphy. No evenings whiled away on video games. No more dancing. I loved to dance. Eventually I won’t even have a voice with which to dictate these words. And alllllllll of that …sucks ass.

It sucks that I was diagnosed less than a year after I bought my house. My life was falling into place. I had a job I really loved, I was going back to school to further that career that I loved. I had signed up for driving lessons to easily get myself from my new house to the job that I loved. I had successfully dropped weight I didn’t want and was fitting in my cute clothes again. My plaid miniskirt was a wardrobe option again. I was wearing medium T-shirts and looking good in them. I was cooking healthy food for myself. I had my very own living room to dance in. I was dancing. I was mayyyyyyyyyyyyybe open for a new romantic possibility; my divorce was amicable and well in the rearview and there had been a few crushes. I was decorating my new home to be exactly the living space I had always wanted. I had a huge, gorgeous backyard just begging for a garden, and I had such plans for that garden.

It’s not. Fucking. Fair.

So yeah. Usually I can take it on the chin and keep smiling and find the good. Because there really is a lot of good. And it almost always outweighs the bad. But some days it doesn’t. It can’t. And on those days I sleep a lot, I take Ativan, I cry, and just generally wallow. I allow myself self-pity. I allow myself to get angry. And when the anger comes, I let it fill me and I feel it to the core and I rage. And I hate. And I keep crying. And then I sleep some more.

And then when it is over, when I’ve given it a whole day, I can put it aside again. I allow it one day of my life, and then the rage and sadness get shunted aside in favor of the day-to-day living that must happen. It gets overshadowed by the joy that still here. My anger serves its purpose and then it’s done. Until the next time. I try not to let mourning for who I could have been – and who I was becoming – overrule the happiness I could still grasp if only I allow myself to look for it. It’s not all doom and gloom, but sometimes it has to be. Just for a little while. So it can fill me, and pass through me, and keep me in touch with my own grief.

Every now and again it’s important to give those emotions their own time, so that I can put them away and get on with the day-to-day living that’s necessary, and to fully appreciate all of the fucking amazing things that are still very much a part of my life.