I am deeply disturbed by the recent quiz on Playbuzz that purports to inform its takers whether or not they are bipolar. For this reason I have composed the following petition on change.org which I ask you to sign and circulate among your friends:
The proponents of Murphy’s Law have been using mass murders to frighten people into a law that erodes HIPAA protections, requires states to implement forced medication, and politicizes the Federal agencies responsible for overseeing mental health concerns. I have watched as one of their leaders likened support groups to appendectomy patients performing the surgery on the patient on the next gurney, called for the return of mental hospitals, called nonprofits aiding the mentally ill “the mental health industry”, and urged that we should stop talking about stigma. This gives me every reason to distrust him and any program he endorses, but many have bought his argument that we should support Tim Murphy’s Families in Mental Health Crisis Act because “it does something for the mentally ill”.
Now I agree that the system is broken and in deep crisis. Even the best community mental health services are in constant danger from funding cuts and fail to deliver services to all the afflicted. Group homes are privatized and overcrowded. Patients end up in jail because they can’t get treatment through other channels.
I am a little shy about tooting my own horn, but word came to me via Twitter that I was selected by Healthline as one of their top bipolar blogs of 2017. Bit of a surprise since I feel I struggle unrecognized much of the time and unread — at least if I go by the comments. Still it is nice to know that I am seen out there along with some of the best:
Pax Nortona is a blog penned by writer and bipolar sufferer Joel Sax. From the first post you read, you’ll see that this blog is different from the rest. Sax writes very personally on the subject of bipolar as well as post-traumatic stress disorder (PTSD). He also composes short creative pieces and philosophical musings.
Add Pax Nortona to your list of blogs to read for regularly updated and highly readable reflections from someone who knows what it’s like to live with mental illness.
Let’s hope that I forget this by the time that my next episode of grandiosity swings by. I’ll be unbearable.
A rich fantasy life is said to be a good thing, but when that fantasy life becomes an vehicle for realizing visions of control and oppression should we celebrate it? One thing I will grant many of those who seek to take mental patients out of prisons and put them back into mental hospitals: prisons and jails should not be places where people with mental disorders are warehoused. Here, however, their mirage begins. They believe that their new asylums will not be snake pits like the old ones were. In support of this belief, they promote a false dichotomy — either we have mental institutions or we have nothing for the mentally ill. The third choice — funding community-based programs for the mentally ill — is a path they do not acknowledge. One thinks of the road not taken: do we follow the same hazardous trail, do we pass through a jungle that has already ruined the lives of many, or do we struggle to realize a third, more compassionate, path?
I often tell new people to the support group that if it were not for the medications, we would be committed for life in stark places. The meds let us go home, I say. There are some, however, who would send us back to the dismal day rooms, claiming that the present system has failed us. Indeed it has, but not because it is structurally unsound but because it has been constructed of cheap materials. Society has failed us by neglicting to provide sufficient capital for community mental health programs. These patient-friendly clinics let us live among our peers and live gainfully. The guarantee of coverage is key to their success. They fail where state governments have been too cheap to foot the bill. So mental patients end up where the money does flow: prisons and jails.
I overreacted the other day and accused someone of meaning something they hadn’t. Today I apologized. When I did so, I mentioned the circumstances of being under attack by other people in the thread, but went on to say that I had wronged this person. Bringing up my tension was not an excuse, but an explanation. I try not to give excuses when I am in the wrong, but save them for when I don’t owe an apology.
People don’t like to apologize. I am one of these. It’s painful to come down, to expose oneself as a moral inferior, but it must be done for the sake of peace and truth. I give more apologies than I get, though I feel that I am owed a few. Jerks can be defined, in part, by never admitting that they are wrong. They blast you with names — the more rotten the better — and accuse you of crimes that you did not commit. I find them in all areas of my online life. Sometimes I block them, sometimes I blast them, sometimes after a few salvos, I declare that I want no more part of their game of “Someone is wrong on the InterNet” and just ignore them.
I have had people try to get me to apologize to someone when that person didn’t think I needed to apologize. The state of mind of my antagonists is surreal under such circumstances. I’ve been accused of all sorts of things but what strikes me is that in all their high-holiness, they aren’t listening to the person who they think has been wronged. I won’t give an apology where none is deserved or wanted, especially when prodded by people who are not affected. No one has the right to appoint themselves as spokesperson for someone else.
If someone tells me that I offended them, I listen to their reasons. Usually I will apologize if we can’t establish that there was a misunderstanding. Misunderstandings are no big deal. They happen. I let them go. I expect no apologies for them, but forgive readily.
I believe that a good apology requires that you take responsibility for your actions, though you may describe the circumstances under which you failed as an explanation but not an excuse. When you say “it was because you said or did this”, it isn’t an apology but a cop-out.
Pope Francis has been pushed into retirement by ultra-conservatives who do not like his inclusiveness. I gain an audience with one of the cardinals who might replace him. He sits half-naked on the floor, looking more like an emaciated yogi than like a cardinal. There’s a smirk on his face. I hear the news that two men are in contention for the papacy, one of them being the man who I visited. Both are extremists. The news seems so real that I believe that I am awake.
Some advocates for the mentally ill think we are doing too much for “high functioning” patients. “High functioning” is not, as far as I know, a word that anyone with a mental illness applies to herself, but is a label affixed to our records by social workers, other mental health workers, and bureaucrats. It signifies that the person in question is able to care for herself without assistance from caretakers or government programs. For the patient, it feels like a kick in the pants and, like most stigma, is based not on how the patient feels but on an outside evaluation that culminates in a “I know what is good for you better than you do” prescription.
A speaker at a DBSA conference that I attended some years back described what happens when a person is labeled “high functioning” too soon:
What concerned [George Nostrand] was the cycle that the mental health system thrust its clients, whereby they were only managed in the event of crisis and until they were just self-sufficient. Once stabilized on the needle’s point of what bureaucrats fobbed off as recovery, the state abandoned these people when they were still fragile. When the client faltered, agencies blamed lack of resolve on the part of the health consumers and/or the care providers for the failures. Nostrand contended that agencies should not merely aim to have their clients mere self-sufficient but thriving in the face of the challenge of the illness.
I am going insane. Every day, I feed Boadicea from a cat food scoop that I keep in her food bag. We have had this scoop since the mid-1990s. It goes in the same place every time one of us uses it and these days that person who puts it there is me. Yesterday, I went to feed her and it wasn’t there. I looked all over the kitchen, on the desk, upstairs, and could not find it. Where had it gone? Where could I have transported it to?
I cry at the top of my voice and revisit all the places the damn scoop could be. But it is not there, it will not be found. Lynn doesn’t understand how upsetting this is to me, how it makes me feel that I am starting to lose it all. She won’t let me suspect that some cruel person has been in the house stealing small but vital things, but where is the explanation?
I am tempted to set up a spy camera to see if someone has been in our condo, but that’s getting a bit paranoid, no? Tonight, the measuring tape that I use for my waist went missing. Again, it always goes back in the same place. No sign of it anywhere. These small things are measuring up to be a lot and I am wondering if they will push me over into the darkness. What is happening? What is my mind doing to me that keeps me from finding these simple things?
The Devil is not the Prince of Matter; the Devil is the arrogance of spirit, faith without smile, truth that is never seized by doubt. The Devil is grim because he knows where he is going, and, in moving, he always returns whence he came.
Let me start out by stating that I do not believe in “self-stigma”: I believe in guilt, shame, and despair but labeling these as “self-stigma” cheapens the meaning of stigma. There may or may not be a motive behind the invention of this term, but the result is that it implies that the people who are the principal victims of stigma are in a conspiracy — or confederacy if you prefer — against themselves.
To further explain what stigma is and isn’t, let me use a parallel that was laid out to me by a friend who was explaining certain terms used to describe race relations. White people often accuse African Americans of being racist, too. African Americans dispute this. My friend — an African American woman — acknowledged that African Americans often hold deeply seated racial and ethnic prejudices. But this isn’t racism because racism requires another element: power. White Americans are in a position to make their racial prejudices inflict suffering on the lives of African Americans. Witness, for example, the unwritten DWB (“Driving While Black”) policies of certain police departments including “America’s safest city” (for white people) Irvine, California. The policy is enforced when a black person drives through the city of Irvine. Because of their skin color, they are assumed to be up to no good and pulled over for some minor infraction. The result is that they are made to feel unwelcome in this college town. That is a ~comparatively~ “mild” example, but American history is rife with other exemplars up to the present day.
I wake up feeling like crud. A perpetually incipient headache — an abrasive cloud leaking through my scalp — lies heavy on my neck. How I hate the gray days of late spring! They bring me down not only into a depression but into a strange, achy malaise that returns me to my bed with a foggy head and a vague stomach ache that doesn’t quite reach into nausea. That’s the nature of this maddening and invisible illness: it doesn’t quite develop into anything — not a headache, not vomiting, not a full-blown depression, not a fever. No pills cure it. Sleep isn’t possible. I just have to bear it until the sun comes out in July. Curses on the May Disorder. Curses on June Gloom. Sixty days before it passes. Sixty not quite miserable, annoying days.
It is hard to have a southern overseer;it is worse to have a northern one; but worst of all when you are the slave-driver of yourself. — Henry David Thoreau
I need to stop talking about my “OCD”. When do I label myself thus? When I do make sure my desk is orderly every night or make checklists or avoid stepping on cracks or squeeze every last drop of toothpaste from the tube or proofread my blogs before I publish them or correct them after I have published them. It’s a cheap use of the term and it belittles those who actually suffer from the illness.
Many people do it. They have no clue about how it screws up the life of its sufferers. OCD isn’t just a few quirks but it takes over entire lives. I know people who have to touch every door knob in their house before they go to bed or repeat certain phrases over and over again or have their food arranged in a certain way on the plate — they can’t eat it otherwise. Some clean until the floors in the house are badly scratched and carpets are frayed from excessive vacuuming Others hoard. My dentist hygienist tells me that she is always telling her clients with OCD not to brush too much; their excessive efforts wear out the enamel on their teeth and tear up their gums. Its sufferers don’t perform their rituals for pleasure but to avoid punishment by the disorder such as extreme anxiety and sometimes panic. One sufferer described it to me as having a lattice of borders in his mind that he dare not trespass upon.
So I apologize for trivializing the term. It is bad enough to have the disease. No one should have to bear with a stigma that makes light of a serious problem in their lives.
The first few hours of the day, after I have taken my Vyvanse, are fine. I eat by a plan, watching my food intake. The hours pass and then night falls. I have dinner. Then the stimulant wears off, the anti-psychotic Risperidone holds sway, and I want every bit of snack food in the house: Chips, rice cakes, popsicles, jerky, raisins, chocolate, tacos — whatever I can get. This goes on until I force myself to stop by brushing my teeth which I make as late as possible because the cravings are strong. I check my blood sugar, despair at the result, take Glimeperide to awaken my pancreas, and go to sleep until I rise again and repeat the cycle.
Seventy pounds came off over the last three years. I have put twenty five of them back. My famishment bounces hard off my belly. I still exercise — I’ve added set backs and sit ups — and my heart is in amazing shape. But my pants are getting tight again and my shirts come unbuttoned at the navel. Oh to be rid of these infernal hungers!
So I am making a plan: do what I did to lose weight before. Eat right is the most important thing I must do: avoid the sweets and the snacks or count them carefully. Make myself exercise every day. Write down everything I eat. Ignore the fury of my appetite.
What helps is the simple reminder that I have done it before. The strength is in me. I will find my way to a smaller waistline again.