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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2 Comments

  1. Eric S said,

    “A man’s got to know his limitations.” Dirty Harry, Magnum Force

    I salute what you are doing here. A dispassionate analysis of one’s strengths and weaknesses is critical.

    The halt can manage a horse,
    the handless a flock,
    The deaf be a doughty fighter,
    To be blind is better than to burn on a pyre:
    There is nothing the dead can do. From the Havamal

    I have used both to remember that you can ALWAYS do something and you have the responsibility to know what you can and cannot do. There is no shame in it.

    Luck and blessings

  2. Hel said,

    So, if you ever need a ride for something that important again, call me. Middle of the day, middle of the night, whatever. My number has not changed and is visible to everyone I’ve got friended on facebook.

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