Aug 27, 2008
Today I did something empowering and yet at the same time it was a pragmatic step. I had ordered a Medicalert pendant online I had custom made that said "tardive dyskinesia". I needed it so if something happenned to me and I ended up in a hospital they would know what medications not to give me that could interact which for starters would be all current antipsychotics as well as a variety of other medications. But I thought that people might see the pendant and then I thought of it as a badge. A form of empowerment. I wanted people to ask what it was so I would tell them what tardive dyskinesia is. Many people feel the wrong feelings "shame", "stigma", "suffering" about it but to me I wear it with pride. Its part of who I am. The part that does hurt me is that other people are developing tardive dyskinesia who don't need to. That's why they need to get the glutamate antagonists out as medications. And then there are people who can't recover with current treatment or who can't tolerate the side effects. Who cycle on and off treatment and either hide their identity or do not understand their thinking is psychotic and think that these thoughts are a "blessing" or "gift" and join other people who will use and manipulate them for political purposes or worse. They are on a downwards spiral but don't know it and you don't know how to approach them. You don't want to appear to be part of the system. You don't want to be a "sell out". But you know that their thinking is irrational. And that they define the world by themselves. And the idea that every thought we have might be just a synpatic transmission and not an exchange of magical energy is too frightening for them. Of course its more than that but recovery in a mental health sense is based on science. What someone gains spiritually or emotionally should not detract from that. And even with full treatment of current antipsychotics someone won't make a full recovery. There is still something missing. And I could see that in people. They asked me about "buddhism" or "personal growth" and I went along with it. And then I felt bad. I said "no its not that. Its that the glycine works better. Ask your psychiatrist about it and maybe you'll recover as I did. I don't have any special talents or abilities. I am just on a better class of medication". But I read outside of this site of people obtaining glycine over the shelves and self medicating. That's a bad idea. Its not "just a natural rhemedy". Its an antipsychotic and no one should take it without working a psychiatrist, ever! But if your psychiatrist doesn't know about it, then you need to advocate and inform them. Rather than be angry for what they don't know, let them know with factual information from the internet and then they can make up their minds better. But as for tardive dyskinesia, people are angry they have it. Its understandable. If people have reasonable evidence to believe they have been abused in a facility or by a treatment professional there are ways to file a complaint and there is no reason you shouldn't. But if you were treated properly you have to realize that this will happen to everyone on current antipsychotics (with the exception of Clozaril which has its own set of side effects such as blood dyscreias, which can lower your white blood cell count and it requires weekly blood monitoring, I went through it, some people recover, for many people, myself included it is a hellish medication with extreme side effects) and instead use it as a reason to advocate for new antipsychotics in development such as the glutamate antaganonists and other study classes. But what if you see someone you know who is not recovered? Don't use it to put them down or say "I give up" or "they can't be helped". If someone is destructive to you by all means get out of harm's way. If they are destructive to their children call Child Protective Services. Don't hesitate. Children come first. But what if they are harmful to themselves? I have a friend who hides out in his house and is often psychotic and hears voices from the televesion. He has tried to commit suicide multiple times. I did not hear from him in a long time and then I called his parents to find out if he was okay. They said he was doing well in general but not picking up the phone. That didn't make sense so I asked them and they said that a friend had stalked him and I explained that that was a rational reason not to pick up the phone and suggested they get him an answering machine. When I spoke to him, as it turns out after a few calls he admitted to me he didnt' want to hear from his parents at all, he didn't like the sound of the phone ringing and he just seemed not to want to talk. He had identified me with his parents. It must have seemed like a conspiracy to him and now he's not talking. But I am not angry at him but I am not giving up either. I am speaking to his parents about finding a trained psychopharmocologist who will start him on glycine. I am giving my recovery back. So other people will never get tardive dyskinesia. Or the extreme forms of it I have such as tardive monoclonus (full body spasms) or tardive psychosis (still in study with me) although both have been mitigated by the rhodiola and the Tizanidine. And so other people can have the full mental recovery I had. Because I am not the only person on earth and if I do not give to others who am I? And if people approach me with anger, passive aggression, helplessness or shame, its just the same as saying "I need help" even if they don't know it. And I can't stand back. And if you've recovered, neither can you. In unity there is strength as the community of people with disabilities. After we overcome personal barriers we can overcome societal barriers and help others along the way. Together we will recover as a society. And as for me, the recovery continues, as do the studies as do the awareness, advocacy and empowerment. What else is new? Join the cause.