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.

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Two Roads

January 26, 2012 at 2:41 pm (Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , )

When I saw this image on Facebook, it neatly summed up a question that a friend posed to me some time ago that I’ve been doing a lot of thinking on.

It’s an honest question, one that makes a lot of sense to me, but at the same time, seemed like such an odd thing to ask.

“So if you gave up all your woo stuff, does that mean you’d get better?”

I thought about approaching the answer from a series of directions. I asked spirit worker friends of mine to write little vingnettes about how sometimes our work is non-consensual. Fala posted a great answer to my question in her essay “You Can’t Go Home Again“.

But I have absolutely no real idea if this is actually a non-consensual part of my spirit path. It never occurred to me to say No. Now, that could be conditioning from years of working with Deities – that although sometimes No is the right answer, sometimes not questioning what you’re told is also the right answer.

And then stuff happened in my life. My spouse had two tonic-clonic seizures within a week of each other, which has never happened before for him. (He has epilepsy, but usually we see a seizure once every other year.) I had a falling out with dear friends that I had no idea how to fix. I got some spirit work that needed my immediate attention. I had a lot of teaching-kink work that needed a lot of administration (my least favorite part of the gig). I had some clients who needed my attention. You know, life and things.

So I made the conscious decision to put my health stuff on the back burner. Yes, I need to schedule an EMG and have some blood work done; I need to chase down an ID doc at Johns Hopkins; I need to start researching a new GP; I need to contact a few people for health-related stuff. But I just said “Fuck it. I’m dealing with the rest of my life instead.”

Now, this treads a dangerous line for me. I was Told, under no uncertain terms, that I couldn’t just ignore this stuff. I know I have a strong desire in me to just give it up, to stop seeing doctors and digging for TEH ANSWER OF IT ALL, and just stay home and let whatever is going to happen, happen. But I was successful in putting it off for a few weeks, and it’s only been the last few days when I’ve been feeling Tapped On The Shoulder about dormant medical stuff. Not a strong Do It Now, just a gentle, “hey, there’s also this stuff.”

And throughout it all, I’ve been deeply pondering the whole “What if I told Baphy to fuck off? That I didn’t want to die in some spectacular public fashion, that I want to just hole up and live the rest of my life in peace? Would I die faster, slower, or not at all?”

That’s not even the question I was asked. But it’s the closest I can come to wrap my brain around. Because the way my mind works, I believe all this spiritual woo-woo shit is 50% psychological, 50% metaphysical. And in the case of my illness, I’d substitute “psychological” for “physical”, or at least maybe 25% of each. I believe that I have a chronic illness because it runs in my family, because I have shitty genes, because I haven’t taken the best care of myself, because sometimes shitty things happen to people, as much as I believe that I have a chronic illness because my Imaginary Friend made me this way so I could pontificate on the spirituality of suffering, disability, illness, and death from a first hand perspective. Both are equally true.

When I seek it out internally, though, there is only one road. Maybe it’s crazy, maybe it’s true, maybe it’s both; but I choose to believe that all of this has some greater meaning; that my suffering should not be in vain. If I can help one person by reading what I write and knowing that the Gods care about their suffering, too; that in those moments where we are necessarily alone (like in an MRI tube, or late at night when we’re awake because we hurt and everyone else we know is asleep), there are Imaginary Friends who are actively interested in our existence; We Are Not Forgotten.

Being disabled can make you feel invisible. Being in a wheelchair makes you feel like the world is made of butts, and that’s not a very pleasant world to inhabit. Being sick when your friends want you to come over and hang out all the time makes you feel like a lesser member of society. If putting my faith in the idea that This Has Purpose gets me through the dark times, then I’m glad I only see one road. That I choose to believe that this is not something I can walk away from, as much because of my Invisible Friends as for the others I give voice to. Otherwise, my life is watching Netflix videos and reading ebooks and hating being alive.

I like the road I’ve chosen.

I hope this answers your question, Friend-I-Have-Not-Identified.

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Power of the Poppy: A Book Review

January 12, 2012 at 11:30 am (Chronic Pain, Uncategorized) (, , , , , )

Since I mentioned “Power of the Poppy” in my post, “Mistress Poppy“, and also because I love Kenaz Filan’s work, I decided to post my thoughts on this interesting tome dedicated to the awesome power, and incredibly real danger, of P. Somniferum, otherwise knows as the Poppy plant.

I was both impressed and disappointed at the same time, if that’s possible.

I found hir amount of historical and medical research on the uses of opium and it’s extracts entertaining and informative, if a little dry at points. It’s a big topic to cover, as P. somniferum is used to make everything from heroin to Vicodin, from opium to codeine. There’s a lot of history, from almost prehistoric medicine men to modern day addiction, but Kenaz finds a way to weave it altogether in a solid narrative. I feel like I know more about opiates than my pain management doctor does, at least anthropologically speaking.

It’s not easy to write a book about one of the most powerful addicting substances in the world from a harm reduction viewpoint – that is, Kenaz never endorses or condemns the use of various opiates – instead, zie clearly attempts to state both the wonderful effects of the drug, and the legal and physical consequences from it’s possession and use. I mean, I assume the author of such a book would have to understand that most of the people attracted to it’s subject matter are either already using some form of opiates already, or are keenly interested to try. So instead of preaching pure abstinence and overemphasizing the legal restrictions on it’s use, zie addresses those issues with enough emphasis to make it clear that there are risks involved, without judgement on those who decide to walk that path. Zie even addresses the needle issue by stating that clean needles are the best bet, but if you must resort to a used needle, zie gives you ways to reduce (not eliminate) the risk of HIV and Hepatitis transmission.

I mentioned to Ninja, as I was reading the book, that I learned more about the drugs I take (oxycodone, and OxyContin) from this book than I did from the doctor who prescribed it to me. I would advise persons on long-term opiate therapy to read this book; although at times Kenaz writes from the assumption/attitude that everyone who uses opiates is doing so illegally or purely for entertainment purposes, zie does share valuable information about the various forms of legally prescribed opiates, both their history and their current use. I specifically appreciated the part where zie made a clear distinction between addiction and physical dependance, something that most laymen miss. (Addicts continue to use, even when there are dire life consequences ; people with a physical dependance have bodies that have adapted to the presence of the opiate and therefore need it for both continued well-being and to stave off withdrawal, but once they stop using it, they don’t fixate on it’s use.)

I created an experience around reading this book that I would recommend to others. There is a section called Acolytes, that details the life and times of several famous opiate users. Most of them were entertainers or artists of some sort, and so I would stop for a moment, search the Internet for media related to the person, and integrate that into my experience of the book. For the musicians, like Charlie Parker and Layne Stanely, I played their music in the background while I read their chapters. I watched the movie “Man with the Golden Arm”, which was heavily referenced in Nelson Algren’s chapter, as well as “Long Day’s Journey Into Night” during the O’Neill chapter. It would be neat if there was a website that collected these resources as an addendum to the book. (I found the majority of these things available on YouTube.)

Where my disappointment came in, was that as a fellow spirit worker, I had really hoped there would have been more spiritual information about the spirit ally of Poppy. It gets a passing mention now and again, but there isn’t even a chapter dedicated to those who wish to work with Her in any sort of real sense. I know that Kenaz has worked with Her as a real Spirit Ally, and I would have loved to read a little bit about hir experiences in doing so. I’ll admit; I read the book looking for this part, and when it didn’t show up, I was let down a bit. I get that the book is likely more marketable without all that woo-woo shit, but this is Kenaz Filan, author of the Voodou Love Magic book. I don’t think hir fan base would have been disappointed with a little woo.

In addition, although I admit that zie did address the addictive qualities of these drugs, I felt that the descriptions of what it’s like to come off of them and the withdrawal involved was a bit tame. As someone who went from using 100mcg Fentanyl patches for 3 years who detoxed down to nothing in three months, I can attest that opiate withdrawal is a horrifying experience not to be minimized in any way. If I had known how bad it was going to be to come off of Fentanyl, I would have never agreed to its use. I feel like whether a person is thinking about the recreational or therapeutic use of these substances (including Methadone), you should be fully aware that kicking the habit is a terrible, body-wracking experience you will never forget.

Overall, it was an enjoyable read. I’d recommend it to people who work with sacred plants, those who are already involved with or interested in opiate use, those who are on long-term opiate therapy, and those who are generally interested in how medicines/drugs evolve over time. It’s a whole lot of book for someone who just wants to find out how to make poppy tea, although the instructions are in there.

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When I Die: Obituaries

January 9, 2012 at 3:01 am (When I Die) (, )

I’ve decided to start a new category of posts on Dying for a Diagnosis, called “When I die”. I do not want people to get upset or offended at them; although what I plan to say is serious, I do not mean for it to be solemn. I want to be remembered in a multitude of joyous ways, and plan to give y’all some ideas on how to celebrate my passing in these posts. Please don’t think I’m wallowing in self-destruction over here; I’m really not.

Anyway, onto “When I Die: Obituaries”

When I die, I would like each and every one of you to submit an obituary to your local paper, or on your blog, or in some other public forum. I would like these obituaries to be blatantly false, creatively strange retellings of my life and it’s details. Choose a small, underserved charity that reaches out to some strange, unrelated population and say “In lieu of flowers, Del requested that you donate to the Little People’s Soccer Team of Sheboygan, MI.” These should be real charities in need of actual donations.

In these obituaries, you should detail the way we know each other, but again, it should be blatantly false. Extra points if it’s so unbelievable that even strangers would balk, like, “Del and I served together during WWI in Mongolia, flying rescue missions.”  Invent whatever family I’m survived by, but it should include you in some fashion. Also, feel free to list the cause of death as some wacky disease no one’ ever heard of, or say it was a combination of lupus and porphryria, with complications due to neoplastic syndrome (because I am a House, MD fan.)

When these are published, they should be collected by someone (I’ll take a volunteer in the comments, who is willing to share an email address with the masses) and given to Ninja to amuse himself when he gets sad.

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Reblogged: Should We Honor All The Dead?

January 8, 2012 at 12:39 am (Death and Dying, Spiritual) (, , , , , , )

A moving piece by Wintersong Tashlin, my lover and fellow clan member, about honoring the dead we’d rather forget.

A sample:

“That said, it bothers me when I see friends, colleagues, and co-religionists, who wish to have it both ways at once. The Dead are deserving of respect and honor, yet people think nothing of wishing ill on specific individuals who no longer walk among the living. Can we curse the name of the deceased saying “this person is undeserving of honor or acknowledgment” or even “may their soul wander forever, never finding peace” while also saying “We honor the Dead as a whole, for they walked these roads before us” without declaring that we are empowered to usurp the place of the Fates in passing judgement?”

I find this article interesting from two different perspectives:

1. When my birth father died, I felt guilty because I wasn’t entirely sad about it. He was abusive to me and my family in numerous ways, and by the time he died he had alienated all of us and was living on his own in a hovel apartment. When I went up there to help deal with the aftermath, it was clear that most of his family felt similarly; I basically planned his funeral single-handedly and was the only person willing to eulogize him. Now, on his birthday and Samhain, I always leave him offerings of food he likes, and if I feel him ask, I will smoke a single cigarette for him. (I quit years ago, but he was a three-pack-a-day smoker to the day he died, and it was the smoking that killed him.)

2. When I die, there will be family and friends who will honor my passing. However, after a year or two, that will likely dwindle down to a select few, and they will eventually grow old and die too. Because I do not have any children, the only youth who may have any feelings about me are my godchildren. But I’m pretty sure that once the shine of my death has worn off, most people will go on and only think of me once in a blue moon. That’s totally okay. But very few, if any, people will be invoking or honoring me as part of their Ancestral Dead. I also know that there are people who will be happy that I have passed. So I am glad that there are shamans that the Gods have tagged to honor those among the dead who don’t have anyone else to do it for them, for one reason or another.

So go check out Winter’s entry. I think you’ll like it.

Should We Honor All the Dead?

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Crash

January 6, 2012 at 3:48 pm (Medical, Mental Health) (, , , )

Every time I feel like I’m looking up from the bottom of the well, the floor gives way yet again.

Monday morning I woke up and had a feeling. It was complex and intricate and hard to define. I knew I was angry – it’s usually easy for me to recognize anger – but I was also depressed, hurt, lonely, frustrated, ashamed, tired, and put-upon. So I did what people with dissociative disorders do best – I shut down. I told everyone to fuck off, and I stopped allowing myself to feel anything.

It was too big, too much, too difficult; unpacking everything that lead to this moment felt so overwhelming that it was just easier to sit back and hate the world. The situation was definitely aggravated by a series of recurring headaches and a sleep schedule that a 14 year old would be envious of. (And better equipped to handle, I think.) Another thing that happens to be a specialty of mine is that I became completely blind to anything good anyone had ever done for me. Everyone I knew were selfish bastards who were terrible examples of humanity and I should just give up on all of them and go live a secluded life in the wilds of somewhere that doesn’t actually exist. Of course, in those moments, I completely forget that I would probably die (in the literal sense) if I did that. But that doesn’t stop my crazy from making me think that.

Now, I’ve been in therapy long enough that even in these moments of emotional despair and dysfunction, I make some important insights. It became clear to me that I had been engendering this attitude in others – that because my body forgot how to play the home game, I had many people close to me doing just about everything for me. Then I got angry at them for treating me like an invalid, but I was doing everything an invalid does. I spend most days in bed; I live in PJs; I only go upstairs to shower unless there’s an emergency; I don’t make my own food; I’m not capable of running errands outside of the home; I don’t even wash my own clothes or make my own bed.

Yes, there was a certain irony that as I was finishing a blog post about what my weaknesses were, I was being completely blind to the fact that I was letting my weaknesses, and the reaction to those weaknesses by people around me, to dictate the majority of my social interaction. It isn’t lost on me how unfair it was that I yelled at Ninja for being more concerned about his ability to “take care” of me than his desire to “be with” me.

What happened on Monday is what I like to call a “crash”. These are moments in my life when my crazy, in all it’s wonderfully terrible forms, decides it’s been playing nice for way too long and grabs me by the short and curlies and decides it may be better at running my life than I am. I have three mental health diagnoses, and all three were readily apparent. I’m betting I’m not the only person to whom this happens.

The hard part now, is figuring out what lead to the crash. Although I take responsibility for some of my terrible behavior, I also do not just dust everything off and say, “Sorry about that. Crazy, you know.” and go back to the status quo. Something caused the crash, although it’s probably more correct to say a bunch of somethings caused the crash, and I need to figure out what those legitimate issues are, and how to deal with them in a mature and less-crazy manner. The first part is the most obvious, but also the most difficult, because there’s just no easy way to do it – I need to own everything I did when I was not sane. I said some shit that wasn’t very nice, and did some things I heartily regret; but I need to own up to them in a way that doesn’t invalidate the very real and sane problems that caused the crazy in the first place.

I have found that in the past, if I rush into the “Sorry about that. Crazy, you know” part without being also completely ready to address the somethings means that the people involved, including me, will just assume that everything was caused by the crazy and try to go from there. And if I try to go back later and say, “Actually, there was something going on when that crazy shit happened,” the automatic response is, “Oh, I thought we had talked about that already.” Because we did. I just left out the part where there were legitimate causes for concern.

It’s one of the lesser-discussed stigmas of having mental illness. It’s really easy for people to chalk up every emotional outburst, or wacky behavior, or uncomfortable feeling, to the illness. However, sane people have no problem recognizing when something is caused by actual strife (I assume), but it’s much harder for someone with mental illness to differentiate between an emotional reaction to an actual issue and crazytalk.

So to those who are reading this who I have had some form of crash with on or since Monday – you should be aware that I’m actively trying to process the difference between my mental illness(es) running amok, and what really happened. I know that at the heart of it is that I feel I perpetrated the illusion that I was/am an invalid, and so over time it became normal to treat me as such. However, it is obviously important to my mental health as well as my physical stability if we all assume that I’m still a functional human being who just can’t do everything they’d like all the time.

For starters, I’ve asked Ninja to operate under the assumption that I am 100% capable of doing absolutely anything, but to be prepared for me to ask for adaptations or offer refusals depending on how I’m feeling. It’s difficult, because it is actually the norm for me to need adaptations or to refuse, but when we start to live in a world where we assume that, I become an invalid. Does that makes sense?

I also recognize that I’ve been a little more (read: quite a bit) depressed and withdrawn this winter than normal for me. I’m sure part of it is because of my health being fairly poor, but there’s more to it than that, and I need to go digging to find what it is. Being depressed makes me a lot more sensitive to slights by others, as well as fairly misanthropic, which is definitely a key to Monday’s crash. I am actively looking at ways to try to regulate this depression, but it will take time, trials, and effort. I may need to put some of the physical health stuff on the back burner while I do this. (I only have so many mental spoons a day.)

So, uh, thanks for reading all of this, and for those of you to whom it directly affects, I thank you beforehand for your patience and understanding while I try to sort everything out. Hopefully this will have a good outcome, whatever that may look like.

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Strengths and Weaknesses, Part II

January 3, 2012 at 11:30 am (Living With Chronic Illness) (, , , )

Part I can be found here.

So before I launch in with the second part of this essay, I want to share a still-festering, very recent wound that completely relates to the topic. This weekend, my spouse was taken to the local ER via ambulance. While things were happening, I was pushed aside and my experience with my own spouse was discredited. I was told that my points of view and feelings about how it was dealt with were lesser than other people’s; no one offered to take me to the ER so I could be with him; and when I was called and given updates to his care, I was repeatedly argued with that these other people could “make” him do things I haven’t been able to convince him to do. It was incredibly disempowering, and hurtful, and every single aspect of it was somehow related to the fact that I am disabled. I have never felt more “weak” than I did then. So that’s your real time example of what it’s like to be treated as a weak thing when in fact you may have strengths that relate to the situation at hand. Back to your regularly scheduled essay.

For me, it all comes back to knowing your friends’ strengths and weaknesses. You do things to support their strengths – by allowing them to do these things, helping find ways that they can do these things in a way that makes them feel like they’re contributing to society, and being excited for them when they do them. For weaknesses, you accept them with a gentle grace – for example, my house is always messy, but I’m happy to have you over all the same, if you’re willing to deal with a little mess without making a big deal out of it. You can also find ways to support your friend by helping them with things they are weak in.

Please use the list below as both an example of the Strengths and Weaknesses of someone with a chronic illness (me), and also as suggestions of ways that you can help support me and be a friend to me in a way that recognizes my autonomy and personhood.

Some of my strengths are:

Writing: I can’t do it every day, and some days I dictate, but it’s not something I need someone else to do for me. Once in a blue moon I might need someone to bounce ideas off of, whether it’s for a new class or a blog post or an essay for a book, but writing makes me feel like I’m contributing to society. Take that away from me and I feel like a schlub who watches TV all day.

Teaching: This can be one-on-one, or at an event for thousands of people, or anything in between. My body might be falling apart, but my brain and my spirit are alive and well. I have a lot of knowledge and insight to impart. Teaching is part of my life’s Purpose, so I take any opportunity to do it that I can.

Counseling: I am a great listener. I’ve had a myriad of life experiences that might prove useful to another human going through similar circumstances. I have studied various techniques for helping people discover the answers within themselves. I have tools at my disposal to help me in this process. And having someone come over and talk to me is a low-spoon activity, especially if you don’t care that I’m laying down when we do it.

Traveling: Now hold on; yes, traveling is a high spoon activity, and it usually requires a level of health. However, even when I feel fairly crappy, if I tell someone I’m going to be there, I get there as best I can. I love going to different places and meeting new people. My only “weakness” in traveling is that, due to the drugs and some of the motor control issues, I don’t drive. But I can take public transportation, or find someone to drive me, most of the time.

Writing and Leading Creative Ritual: Even if I know a ritual is going to wear me out, there are few other things I’d rather spend spoons on. If you are getting married, or divorced, or collaring a new slave, or need to mark another change in your life; if you need a catharsis, or an ordeal, or some other spiritual challenge to bring you to a new plane; if you need rituals for your event – either big, public ones, or small, intimate ones – I can come up with something. And since I have a particular distaste for ritual drama – the kind of rituals where everyone shows up and watches four people do all the work – I can promise that my ritual will have a place where everyone gets to be involved, to feel like their presence matters.

Making Decisions about My Health Care: Even though I’m a Libra, and we’re supposed to be indecisive, I have found that I can actually be pretty straightforward when it comes to making choices, especially in my health care. Every so often I’ll post a query to the Internet, but even then I usually have an idea of what I’m going to do, but want to make sure I haven’t overlooked an obvious option. I have a great team of medical advocates who know my health situation in it’s entirety, so if I really can’t make a decision, I can turn to them for help.

Those are some of my strengths. So for the most part, I don’t need any help with these things. Sometimes I might need help with a task related to getting these things done – like someone to drive me somewhere – but overall, I am not hoping someone will sweep in and take over these burdens.

Some of my weaknesses, or things I usually need help with, are:

House maintenance: Ninja works a lot of hours, and I don’t have the spoons or the body to do a lot of housework. I do my best to keep my area of the house livable, but that means that parts of the house I don’t spend a lot of time in get dusty and messy over time. Also, many people use my kitchen, and not all of them clean up after themselves. So if you have two hours to spare, just about any time of any day, I probably have a household chore that needs doing.

Getting To Doctor’s Appointments: As you might imagine, I go to a LOT of doctor’s appointments. Right now, I’m seeing five doctors on a regular basis, and then there are other specialists that I need to see from time to time. This also includes testing. One of the nice things about taking me to the doctors is that you can turn it into hangout if I am feeling well enough and you have the time. I’m usually amenable to going out for food or some other social thing afterwards. My advocates take me to many of my appointments, but they have lives and jobs too, so sometimes I’m at odds. I may ask you to come in with me, since my memory is getting worse these days, just so I have someone else to touch base with if I get fuzzy on what the doctor said.

Getting Out to Do Fun Things: This is a hard one. If you want to do this with me, you need to have a thick skin, because for each time I agree to come do something, I’m going to have to turn you down ten times. These days, it’s rare that I feel so good that I can’t wait to get out and go do something; what it more honestly looks like is I get to a point in my mental health where I know if I don’t go out and interact with the rest of humanity, I’m going to lose my grip. So I need people who are comfortable with calling me up to include me in something they’re already planning on doing, that is low-spoon (bowling is about as active as I get; if there’s a lot of walking, I’ll want to bring my wheelchair), who are willing to come get me and maybe my wheelchair. It’s actually better to ask me spontaneously, because I’ll know that day how I’m feeling – it’s harder for me to RSVP to something two weeks in advance. (Although when I RSVP to something, I try really hard to be there, unless I’m really not doing well.) I like going to museums, movies, book stores (especially Barnes and Noble, because I have a Nook), poetry readings, plays, musical performances, bands, kinky stuff, pagan stuff, rituals, playgrounds, etc. Oh, and my wheelchair requires someone to push it – I promise, even though I’m a big kid, it’s not hard – so be prepared for that. It also means that wherever we’re going needs to be handicap accessible (I have a parking placard I can bring), and not so crowded that the kid in the chair is going to be swamped by people standing so I can’t see anything but other people’s butts.

Food: I don’t cook anymore. Ninja has a limited repetoire, although to his credit he is working on learning more things. However, most nights we do some form of take out, because it’s easier and quicker. Since he comes home at 7:30pm, to wait another hour for dinner to be ready means we’re usually starving by the time we actually eat. So one way food is useful is quick-to-prepare, easy-to-store, labeled food that can be popped in a microwave or oven. (Yes, our oven works now!) You could also come over before Ninja gets home and use our kitchen to prepare a meal.

The other way that food is helpful is that many days, I can’t get to the kitchen. When my pain is high, climbing the stairs is very difficult for me. So I keep a stash of non-perishable (or “won’t go bad in two or three days of no refrigeration) food with me. Right now, I’m stuck with a fairly small cycle of the same foods, because I don’t do the grocery shopping and a lot of how I pick what to eat depends on me actually seeing the food and saying to myself, “Oh, yeah, that would work.” I can’t do that from home. (And yes, we could do home delivery, but honestly, it seems silly, since we have two grocery stores within walking distance of our house. It’s something I’m wrapping my brain around, slowly.)

Entertainment: I have a Netflix and a Hulu Plus account, so if you find something funny or interesting on there, point me in that direction! (I particularly like documentaries, medical dramas, some reality tv, stand up comedians, and indie films). I love articles on wacky medical stuff. Instead of linking me to something I’ll read in thirty seconds, I love being sent to websites with lots of stuff to digest. (I fell in love with Regretsy and Cracked when people sent me in that direction, for example.) I don’t have a lot of discretionary income to throw away, so unless it’s something you think I can’t live without (or something that will actively enhance my life, like if you find a way to attach my cane to my wheelchair…), shopping sites are more torture than fun for me. Like I mentioned earlier, I have a Nook, so if you also have one and want to lend me something, I may be able to lend you something in return. Or if you have suggestions of books available in e-format that I should read, that would be fun. If you’re an author with a book in e-format, I will happily write you a recommendation on Amazon/BN.com/wherever in exchange for a copy of your book.

I don’t listen to a lot of podcasts, but if you know of one that you think I should be listening to (pagan news, kinky stuff that isn’t Erotic Awakenings because I already listen to that, philosophy, meditation, Northern Tradition stuff), and I can listen to it without downloading it, I’d be happy to check it out.

Those are the things I can think of off of the top of my head. I’m sure there are others.

I have a lot of “internet friends”. As someone who attends several pagan and alternative sexuality events throughout the year, as well as being active on a few email lists and social websites, I have many people who consider themselves part of my life who wish there was something they could do to help me out, but either live far enough away that a casserole is out of the question, or are too busy with their own lives to make room for someone they’ve only met once or twice. However, how that desire ends up manifesting has been pretty much a toss up. Some of them try to be helpful by reading what I write and trying to be an active part of figuring out alternative treatments, or suggesting diagnoses. (We know how I feel about this already, right? Short answer: I hate it.) I react pretty negatively towards that, but I hope people understand that I really do see that it comes from a place of love and concern and maybe a little helplessness – you want to do something positive, but you’re not sure what that would look like. Some of the things above apply to you – like finding fun websites – but here are some suggestions that I would like if you can’t come over to help out.

Send Me Emails With No Expectation of Reply: My email address is awesome dot del at gmail dot com. Tell me about your life, about something you’re struggling with, or a secret you can’t tell anyone else. Write a short story. Write a dirty short story. Relate to me something that happened when you were in high school, or college, or when you were eight. Tell me about how you came to your spirituality. Tell me about the drama in part of your life, in a way you can’t tell anyone else because you don’t want to be seen taking sides. Tell me about your breakup. Or your wonderful relationship. Just don’t expect me to write back, or write back right away. I really try to keep up with correspondence, but I have to prioritize who I write to, and how much I can do in one sitting.

Make a Mirco-loan on Kiva.com: I love turning people onto this idea. What happens is that you lend $25 to someone in a third world country (where that $25 means quite a lot) along with many other people, until the borrower gets what they need to better their lives in some way – start a pharmacy, buy more cattle, buy seed for their crops, start a taxi business – and then over time, they pay back in small increments with interest. Eventually, you get your money back, with a little bit of interest. What most people do is immediately re-lend that money to another person, and so on, and so on. It’s a great $25 investment that ends up helping lots and lots of people. And if you don’t have the time to deal with all of that, give me a $25 gift certificate on there, and I’ll add it to what I’m already doing. This may not help me directly, but I feel good when I turn people onto this.

Get someone to do something for me for five bucks: I just recently found www.fiverr.com. Basically, people list something they’re willing to do for five bucks, whether it’s draw a picture, or sing a silly song, or make a video, or give you a tarot reading, or leave a message on your voicemail as a celebrity. You have to do a little wading to find something worthwhile (there are more than a few “I’ll write something on my face in sharpie and take a picture of it” listings), but there are some pretty cute offers.

Gift Certificates: There’s not a lot of stuff that I need, financially speaking (thank the Gods), but if you really feel called to contribute to my well being, I enjoy gift certificates of any size to BN.com (to buy more stuff for my Nook), drugstore.com, Safeway (the grocery store, it’s where I buy most of my food and all of my meds), most fast food chains (Subway, Pizza Hut, Chipotle, McDonalds), etc. They don’t have to be huge – even five dollars makes a difference.

Pointing Me Towards Easy Ways to Make A Buck Online: I will take surveys, write essays, review stuff, and the like, as long as there’s no time or quantity expectation – that is, I can do it when I feel good, and skip it when I feel crappy, and there’s no pressure. We’re by no means starving, so I don’t need this to live – it’s just nice when I can contribute towards our mad money.

Book Me/Talk Me Up: If you live on the East Coast, and are a part of a kink or pagan organization that has some sort of education program, talking me up to the people in charge of picking presenters and making the necessary “introductions” via email goes a long way to helping me do more teaching and writing, and can even get a Del to come visit you! I will even teach classes for ten people in your house, if you can do all of the arranging. Just let me know you’re doing this – so that I don’t get a random email from some programming director saying, “I’ve heard you’re interested in teaching for us” and I freak out because I have no idea who it is or where they’re from. Even if I’ve taught for them in past, (and even if I’ve done it many times), dropping a note to the coordinators/programming people and telling them you love my stuff and can’t wait to see me at the next event helps. Sometimes, events drop me for no apparent reason, and it’s important for them to know that you look forward to seeing me there and my classes are part of what make their event fun for you. If you need the contact information of an event coordinator for somewhere I’ve taught at before, write me and I’ll get it to you.

I hope you find this useful. Even more so, I hope this encourages others who are struggling with health issues to make and post their own lists, so I can find ways to help out others as well. I hope we can all come to a place where asking for what we need or what makes us feel human becomes something without shame, without feeling weak or useless. It’s okay to need things from other people. It really is.

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