I recently wrote on my Patreon about Dave, my new disability advocate who seemed like he was going to be helpful for once. Where my previous advocate was good at bleating on endlessly about my alleged “rights” as a disabled person, wasting my time and energy listening to her while not actually helping me gain access to resources, my new advocate put on a seriously impressive show. Because I don’t have a car and am generally too sick to walk or ride my bike more than a couple of blocks, and likely too sick to drive even if I had a car, he arranged to pick me up for our appointments and afterwards took me back home.
Because I no longer possess executive function and cannot consistently or reliably complete tasks that require it (read: the stuff corporate executives pay other people to do for them, particularly female people, namely secretaries, wives and others) this man filled out applications for me, doing some of them online, addressed and mailed the ones going out of town and hand-delivered the rest. This was almost unbelievably (!) helpful and I felt cautiously optimistic that things might finally be on the right track: a track towards getting me the disability and need-based benefits I’m entitled to as a seriously ill person with a disabling incurable, progressive disease.
To wit, Social Security benefits, into which I have paid since I started working when I was 15 and which they will just give to me freely if I live long enough but for which I have to beg in order to receive now, and housing, food and cash assistance that will help me stay in my little apartment, run my small business and somewhat control my environment and my access to climate control/lights/running water/refrigeration/toilet etc. and privacy and relative peace in which to care for my 2 adopted shelter cats and manage the daily pain and indignities of my disabling autoimmune disease.
The online application for SSD was returned to me in hardcopy to review, sign and return. lol. Along with a notice that if I want to also apply for SSI, the “other” form of disability-based benefits that’s basically exactly the same as SSD and as far as I know requires mostly the same information sent to the same place, I had to do a separate application for that. lol. The application for food and cash assistance was “never received” by social services, according to social services, even though Dave hand-delivered it and watched them time/date stamp it himself. lol.
Continue reading “Of All The Things I’ve Lost, I Miss My Mind The Most. Ft. Joker”
Many chronically ill people eventually learn about the “Spoon Theory” of chronic fatigue, which is basically a way to explain to healthy people what it’s like when you no longer possess (or never had) virtually unlimited mental and physical energy to do what you want. Because it’s always the responsibility of the weakest and sickest to explain ourselves to healthy people innit. A person’s spoons are a visual representation of their physical and mental energy reserves for the day, where a physical or mental activity “costs” one or more spoons to perform and when the spoons are gone the sick person has no choice but to stop acting and rest. With adequate rest and recovery time, hopefully their spoon reserves will replenish by the next day but that is not always the case. Many days, seriously ill people may have no spoons at all.
Spoon Theory was described and named by a chronically ill woman and it is pretty accurate in my own experience. For the first time in my life, after putting myself through law school, studying for and passing the bar exam, and then working more than full time in a stressful and demanding career in addition to a lifetime of “adulting” meaning maintaining a household and nurturing various parasitic males I no longer have anywhere near the energy I once had and can now barely get anything done, regardless of urgency or import. It’s not a matter of how important anything is anymore, nor how badly I need to or want to do it. I am not in control of that now and it is debilitating and terrifying.
Healthy people have no idea that’s even possible and they often refuse to believe it. And that’s an example of ableism, or discrimination in policy and practice against disabled people and in favor of healthy people. Young people seem acutely aware of the concept of spoons, chronic illness and ableism while older people seem to have not a clue; the implications of that are terrifying but I will leave that for another day.
I recently attempted to describe my own limitations to my mother, and even though as a nurse who claims to have rigorously studied the issues and thinks she knows everything there is to know about health, wellness and chronic illness (LOL) she had never even heard of “spoons” or spoon theory. Considering that that information is literally everywhere if one only cares to look, her research skills get an F. Her practical knowledge gets an F. Empathy F. Effort F. Fucks given on behalf of the chronically ill F. Fucks given about me and my new normal F. Decent human being D+. Maybe. Maybe there’s hope, I think to myself, and at least a D+ is better than an F in that department, although the D+ is likely generous. It’s a pretty important department and I like to think it matters but maybe it really doesn’t. Maybe there is just no way that healthy people will ever understand or care what it’s like to be seriously chronically ill no matter how decent they are but I decide to try.
Continue reading “Now That’s Some Serious Chronic Fatigue. Spoon Theory 2.0? (Patreon Link Within)”
It really bothers me that I’m sitting on all this legal knowledge, experience and skill and there’s nothing I can do with or about it. Because of the pain and symptoms of my disease I am definitely not physically or mentally able to practice law full time anymore, but as I learned early on, to my crushing dismay, there is really no such thing as a part-time attorney. This profession is still a bros club which means that it requires long hours and plenty of so-called face time, exactly as much as you would expect in order to squeeze most women out of most of the best positions while simultaneously providing cover, excuse and alibi under which powerful men commit adultery, avoid emasculating and squikky domestic chores, and otherwise abuse their power at women’s and everyone’s expense. Seriously, don’t let the relatively high rate of female law graduates fool you into thinking the law is a reliably safe, lucrative or accessible field for women because it’s definitely not. Fuck me did I learn that one the hard way.
But you know what? I’m not dead yet and I’m still breathing and conscious and pissed off enough to write this post so I’m going to write it. Today, my upstairs neighbor had what was apparently a psychotic break and started throwing bottles of piss and garbage into my yard and threatened my life. I called the cops and made a report. He was arrested and removed based on my statement and that of other witnesses (crime victims are technically just witnesses ourselves) and my property manager cleaned and disinfected my yard at my request. The cops, firemen, first responders and the whole damn town apparently turned up to watch the show. What they didn’t get to see was the man who threatened and assaulted me get off with a warning or with no consequences at all. Who knows what the second act will be but the first act saw my assaulter arrested and taken to the hospital first, then presumably to jail.
I am writing this post to give a practical, technical example of proper reporting behavior/content to victims who report threatening or violent behavior, which reporting will leave the cops with little choice but to arrest, hold and charge the perpetrator with a crime. Little choice is not no choice of course and they could still let him out/off at any time. That’s probably exactly what will happen in the end, but I gave them as little choice as possible and increased the chances of an arrest, hold and charge the best I could. Here’s what I did. The short answer is, you have to answer YES to both of the following questions if you want the incident to be taken as seriously as possible at the reporting stage, hopefully ensuring that your attacker is arrested and taken to jail, that he is held there, and that he is properly charged with a crime.
Continue reading “PSA: How To Report A Threat Of Violence to Increase Chances Of Arrest, Hold & Criminal Charges (Or, The One That Maybe Didn’t Get Away).”
Recently I was offered a part-time job helping a friend’s mother regain her speech following a stroke. I really, really like this woman and her mother and I am actually looking forward to helping them both get through this. Yesterday I tagged along to a hospital appointment with the speech therapist and I was struck by my friend’s energy and good humor as she guided her mother through her exercises. She has been taking her mother to appointments in the evenings and doing this alone for months after working long and physically and mentally exhausting days and seeing her teaching her elderly mother how to speak again nearly broke my heart.
My friend’s mother was a teacher in her previous life and apparently they used to play word-association games in the car during road trips, the kind of “games” that seem to be the playground of the generationally literate, the kind of wordplay I was never able to do or even care about to save my own life. I can tell that her mother is still very much “there” and that she just has trouble grasping and uttering the correct words (she asked me how to spell my name and after that she did not forget or stumble with it again). Apparently, the mother was initially extremely frustrated at her speech limitations and fought against the stress and exertion (and compounding failures) of her speech exercises but has since calmed down a bit; she does her homework and participates in her exercises without much complaint. My friend told me they try to have fun with it and they end up laughing a lot. I’m glad she told me that explicitly — that they were deliberately trying to make it fun — because that is not a tack I would’ve known to take as I find the whole thing very unsettling in the vein of Dworkin and her comments on female old age and how that plays out under late stage capitalism and patriarchy. I’m glad they had me go once as an observer to see how it’s all supposed to work. Of course, after observing for a bit I had a question.
In my isolated, sick and medicated state, while I can still write and watch videos (and read in moderation) I actually think my own speech and memory skills have begun to fail. My friend and the speech therapist were running my friend’s mother through word association and “priming” exercises which went something like this: “Watermelon, fire truck, camping, blood, starfish. Which of these things are red?” I should mention that she also lost a lot of her eyesight in the stroke so she can’t look at the list, or refer back to it, she just has to remember the list as it’s being read aloud and then only afterwards is given the “category” she is supposed to be sorting them into (e.g. things that are red). Considering her circumstances she does remarkably well at remembering the list when I myself was having a difficult time remembering the items and then sorting them after the fact.
The way it played out in practice made it completely clear to me that if she can’t remember the list, they are going to think her troubled response is a speech-related problem and not a memory-related one. And although I had a feeling this outcome was unintentional, I didn’t know for sure or whether it mattered because the policy/intent behind speech therapy in her case had not been explained to me. For an elderly woman who has just had a stroke, this seemed needlessly cumbersome, not to mention cruel and unfair, assuming the exercises were not intended to include the obvious memory challenge that was baked-into doing it that way.
Continue reading “Helping a Friend’s Mom Recover Her Speech After a Stroke. Moron Medical Incompetence.”