Locked Inside

January 31, 2012 at 7:05 pm (Living With Chronic Illness, Medical, Mental Health)

Most of the posts I make to this blog are difficult. Some of them sit around in my head for a while until I figure out what I really want to say about the subject. This one comes from a strange place: I thought about posting it to another website, but it didn’t seem right. Then Baphy told me in a whispered voice, “Lots of disabled people feel that way, you know. You have a place for that.” When I resisted, I got that all-too-familiar push, that “do it of your own volition before I Tell you to do it.” So here I am.

One of the hardest things I’ve been dealing with over the last few months is fighting off depression, or emotional instability. This funk I’m in now is clinging to me like some piece of gross that’s stuck to your hand; you fling it about, you try to wipe it, and yet it still remains. You stick your hand in water and try to wash it away, but then the smell lingers and that’s just as bad.

Paired with this depression is the rising difficulty I’m having with getting out of the house. Some of it is about my bodily condition: lately, my leg pain is out of control, and even just wandering around the house makes me hurt pretty badly, much less trying to go to the store or hang out with a friend. Hauling the wheelchair everywhere, although useful for getting me out of the house, doesn’t do positive things for my emotional state – it’s difficult to get in the car, someone else has to do all the lifting and packing and pushing and maneuvering, and I feel like people see a person too fat to walk, even if that isn’t the case – so I have a terrible time asking people if I can bring it. I can’t predict from day to day how I’m going to feel, both emotionally and physically, and there are some days when it’s really just better for me to stay home and be mopey.

On top of this, Ninja can’t drive for three months. This is a delicate subject in my house, because it’s the absolute number one, bar none, top of the list thing that Ninja hates about having seizures. It’s a taste of what I go through all the time, not being able to drive myself from here to there, but I don’t make that association when he’s banned from driving. Even when he’s post-ictal (the stage of consciousness right after a seizure, when they’re awake and somewhat aware of their surroundings, but not completely coherent) his first thought is about not being able to drive. And as he is my spouse and primary care taker, I can’t just ask him to take me out to dinner, or for a random drive (things that usually cheer me up a little); I can’t even mention the lack of these things, because it’s so triggery for him.

I know I have friends who would happily take me places if I asked, but because I hate the way it makes me feel (around the house, the term for “asking for a ride somewhere I need to go” or “asking someone to run an errand for me” is called “panhandling”) I rarely do it. You, as my friend, can assure me a billion times that you want to hang out and the wheelchair is no big deal and actually it would be really good for you to have an excuse to get out of the house too; even knowing all of that makes it hard for me to ask. I’m afraid I might have to cancel, or find out that two days later I actually need a ride somewhere and now I feel I can’t ask you for something so soon, or that the wheelchair won’t fit into your car and mine is hard to drive, or whatever.

Then, there’s the problem of events. I still send my class list out to several events, because they’re probably the easiest way for me to get out of the house and feel powerful and useful to society. However, many event organizers are becoming hep to the level of disability I’m experiencing, and have begun trying to make decisions about my involvement based on this knowledge. This hurts me to no end. I try to deal with event organizers as employers; even though the “payment” I tend to receive is barter, it’s still payment for services rendered. In that case, having an employer tell me that they’re lessening my work load, without my consent, because of what they “know” about my health (which is rarely, if ever, the whole story), feels all sorts of discriminate-y to me. There have been a few times when I’ve told an event that I know I may be experiencing a medical something-or-other when their event is scheduled, and I try to be honest about what that means. For instance, when I thought I was going to be on the TB meds during GKE, when I submitted my classes for GKE I mentioned this and what I thought the side effects might be. I kept them up to date on what was going on with me, as much as they needed to know, and then when it turned out I wasn’t going to be on the meds then after all, I told them that too.

Where this all leaves me is as a person who doesn’t leave the house very often. There are some times when I don’t leave the house for a month.

This does not do wonders for my emotional stability. The longer I am away from the general populace, the more anxiety I experience upon my return. I remember a recent trip to IHOP with Ninja, where it took most of the meal just for me to stop feeling like everyone was staring at me. I hadn’t left the house in quite some time. I felt awkward, like I had to forcibly recall how to be a normal human eating pancakes at an IHOP. So even when I do get to go out, sometimes it’s not the greatest of experiences for me, at least in the beginning.

I only know the weather outside is nice today because a friend ran an errand for me, and after he left I realized he wasn’t wearing a winter coat. I had to then access the Internet to find out that it was 60 degrees outside. That’s sad, to me.

I’m also struggling because with lack of going out, means lack of exercise. In the past, the exercise I could always rely on was walking. But now, with the pain and muscle twitches, numbness and ungainly movement in my legs, I don’t do very much of it. Which also means my stamina is worth shit. I try to get up and moving on days when the pain is less, but I seem to always pay for it the next day.

And this “locked in” feeling is only part of what depresses me.

I miss feeling desired.

This isn’t entirely sexual, but we will go there a little bit.

Let’s go back to events. When an event tries to limit my involvement due to disability, what I hear is “We don’t want you.” When I go to an event, and I have a hard time getting around, I feel like the Universe doesn’t want me there. When I flirt with someone, only to have them see a fat gender neutral disabled thing, well, you can imagine how that makes me feel. I recently went to an event with Queer Speed Dating, which I thought would help me meet new people and expand my horizons, but in the end it only re-emphasized that I am a specialty within a specialty within a specialty, and most normal people can’t relate to me in that way. (And I wasn’t even in my wheelchair.)

The way I normally meet people, both friends and better-than-friends, is face to face. I’ve tried the whole online thing, and in very few cases has it ever lead to somewhere good. And honestly, I’m not really sure what the hell I would want out of meeting someone new. I have a wonderful spouse and a dedicated slave; I have two wonderful LDRs that allow me to engage in a “relationship” when I feel like I can and are understanding when I can’t; I have tons of friends who make me happy; and yet there is this urge to seek something else.  I’m not sure what this else is, although I have some ideas as to what I’d like it to entail. I know I’d love to have more friends who are available for G+ hangouts during weekdays – I’m hoping that if I can add some online-yet-live socialization to my bag of tricks, I might not feel so anxious when going out into the real world. I know I’d love to have some disabled/chronically ill friends that I can talk to about the intricacies of what our lives are like, without fear of trying to “solve the problem”. It would be lovely to find a local person to go on dates with, and possible do more than ‘date’, who is hep with who I am and how I present, as well as the complications my illness presents to a relationship.

I’m doing my best. I know I am. I am going out when I can make the right arrangements. I am not shying away from most social activities as long as they’re at least somewhat accessible. I’m seeking out new opportunities. I’m fighting this depression with all the energy I have, which isn’t a whole lot but is better than nothing. I am trying to make the most out of being indoors, by reading books and interacting online and writing and watching interesting documentaries and trying my best to keep up with email (and failing a lot, but at least trying). I am in the midst of making a serious decision about whether or not to pursue a degree online. Recently, I was told that I might write a kick-ass book on meditation, and I’m definitely thinking about that as well.

But for now, I just feel locked inside. I hide a lot of my depression, because I don’t want the only socialization I get to be centered around how crappy I feel. I have to be strong for my spouse, who is going through his own medical trial, and needs someone who has him, every step of the way. I am afraid to be completely open about my medical stuff, because event organizers are starting to treat me as though I am unable to fulfill a commitment. I know I have a lot more to give to the world, but right now it’s hard to find access.



  1. ruth said,

    if you can explain this g+ thing to me, and you would like me to hang out online with you, i am happy to do so. i am not around online all the time, but my attendance at the deathly important farmville things is certainly time better spent with you. i am not going to tell you obvious things… but just because i have been avoiding my email addy for the past month or so, i would like to make a simple statement for the record.
    i love you. i love you and i want you. i want you in any capacity i may have you, from sitting in a room with you, seemingly not interacting, but breathing the same air, and aware of your proximity, to hot kinky sex, to cuddling, to as intense a scene or as low stress a scene as we can have together. i want you as a lover, as someone to serve, as a friend, as a fellow human being. i love you in private, and i love you in public. i love you online and in person. i do NOT love how far away we are. i know that when things are hard, none of this changes anything… but it is true.

    • dying for a diagnosis said,

      I will explain this G+ thing, for you and anyone else who would like an explanation.

      Basically, G+ is yet another social medium. However, unlike Facebook, there’s no gadgety gamey bits; it’s just “post what you’re thinking”. Unlike Twitter, there’s less #insider #jargon #that @only #twitter #people #get, and no character limit. I like it because up until a few days ago, teenagers weren’t allowed. I get less spam requests on G+, and can heavily filter who sees what (like LJ).

      If you have a Gmail account, you can use that info to set up a G+ account. Go to https://plus.google.com and sign up.

      A G+ hangout is, at it’s core, a video chat. You can either set one up where people RSVP and it’s private and only people on the invite list can join, or you can make it public where any ol’ Joe cruising for a chat can pop in. I don’t know a lot about it, because I just did my first one with Mako last week. I hope to join in on a book club hangout this weekend if I’m around, since they’ll be discussing a book I recently read.

      In order to do a G+ hangout, your computer needs to have a front-facing camera. That is, a webcam that faces you while you use the computer. Mine is built in. The G+ program does all the work when you sign in; it activated my cam and even gave me a moment to “fix my hair” before it went live.

      That’s about what I know about hangouts. If you want to schedule a weekday Del hangout, let me know. 🙂

      (Oh, and thank you for all the wonderful other stuff, too.)

  2. Tirani said,

    What I am living with right now is a pale shadow to everything you’re going through, but I get this. I have felt cut off, disconnected, from my life, the very thing I’m trying to get back, in different ways both before and after the surgery. I’m doing different things to address it: picking up old hobbies that I couldn’t enjoy while my shoulder hurt so much, spending time with my partners, inviting my friends to the house when they have time. It doesn’t help when I’m alone at 2 am and I can’t even get solace of looking up at the stars, because I’m in this brace and my head won’t go far enough back for me to lift my eyes to the sky.

    • dying for a diagnosis said,

      Do you have Google Sky? Ninja loves it. It’s a phone app where you point your phone’s camera to the sky and it calculates what constellations you’re looking at. I wonder if that’s a way for you to see stars in your present situation.

      I look forward to seeing you emerge from your chysalis a stronger and better Tirani than I have known before. Good healing!

      • Hel said,

        The version of Google skymap I have on my phone doesn’t require a camera, it does it all with gps and compass.

      • Tirani said,

        Unfortunately, my phone’s not that cool. (I’ve got a couple year old Windows phone. We couldn’t afford a datapac when I was in school, and the missed work and surgery has pushed back funds to upgrade. I will, however, definitely keep that in mind for when my phone *is* that cool, thank you for the pointer!)

        I have hope I did not 2 years, 1 year, 6 months ago; that alone makes me stronger than I was before. Even if the surgery doesn’t help in the long run, I can still say I’m doing everything I can to take back my extraordinary life. Your journey has been one of the things that’s inspired me to fight so hard for answers, for solutions instead of just accepting this as they are.

  3. Eric S said,

    Hold on my friend. You can make it.

    • dying for a diagnosis said,

      I’m trying. I’m really hoping that the spring will bring renewed vigor. Thanks for everything.

      • Eric S said,

        If it helps, you have certainly helped me in return. It occurs to me I had a vaguely similar experience for a bit over a year long before you met me. Also, we are happy to try to have you over sometime or bring takeout by if that is easier.

  4. Fala said,


  5. Kate said,

    *listening* and paying attention. I’m not really in a position to help with a bunch of these things (a G+ hangout would be grand, if an after-6pm time is feasible sometime!), but wanted to say that I’m thinking of you, and taking to heart what you’re writing.

    • dying for a diagnosis said,

      There seems to be a lot of interest in a post 6pm hangout, so I may do one next week at some point.

      Thanks for listening.

      • dying for a diagnosis said,

        I announced this on G+, and will echo here: I’m hosting a hangout next Tuesday starting at 6:30pm and going until we decide to stop. Hope to see you there!

  6. Alex said,

    I hear you.

    I would love to spend some online time with you, if you’d like. Do you watch Game of Thrones? Do you want to? I need to watch the first season after reading the books and would love a watch-along buddy..

    • dying for a diagnosis said,

      Hi Alex:

      I’d love to hangout with you too. Are you on G+?

      I haven’t read nor watched Game of Thrones. It’s just one of those things that has passed me by. I’m pretty sure it’s on HBO, and I don’t have access to any (legal) source to get the show. If you have a source, let me know and I’ll definitely give the show a chance.

  7. Etana said,

    I like Alex’s suggestion of Game of Thrones. I have vid files of it I could upload for you (maybe Dropbox?) and we could watch eps together and chatter! Reminds me of my fandom days.

    I don’t use G+ mostly for accessibility reasons, but lately I’ve been home about 1 day a week because of depression, and chattering online would be fun! How do we find each other on G+? (I use my real name there) (ugh real name policy) (ugh policy)

    • dying for a diagnosis said,

      So I’m curious what the accessibility issues are with G+. If you don’t want to share them here, you can email me.

      I dunno if I’m going to get in trouble for saying this, but I use “Del” on G+ and it’s not my “real” name. I think having a fake name that sounds like a real name is useful. I bet if you changed your “real” name to Etana Rocks or something similar they wouldn’t bat an eye.

      The best way for two people to hang out on purpose is to agree to a time and both be on; one starts a hangout and the other joins in. I’ve also been known to just turn on a hangout and see if anyone will show up randomly.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: