My parents arrived at the Rochester NY airport 6 hours late due to bad weather at JFK in New York City. The stress of traveling is hard on anyone, but especially on people who are in the 80s and so my parents were exhausted. Of course, by the time they arrived it was nighttime and I had to drive them and my brother the hour and a half home back to our little college town. I'm no longer very comfortable driving at night, but it had to be done and I did it. We arrived at my parents hotel after midnight. I left the Apple iPad with them and told them I would be over the following morning to give them some instructions on how to use it after they had had their breakfast.
I had done a lot of work beforehand scheduling daily activities for the week ahead. I had also spent a lot of time learning to use the iPad because I really wanted my parents to get the most out of that device considering their home computer was practically defunct. When I arrived at their room later that morning I was somewhat nervous about teaching them and curious about what their reactions would be. I had planned to try and teach them for an hour and a half each morning and let them explore it on their own each evening. My mother responded positively to the iPad, but my father was rather intimidated by all the information I was giving him about it. He kept asking me how I managed to learn to use it and I kept telling him that I had had a month to learn it and that I learned it by exploring it, by making mistakes and trying again. I told him that this is what he and my mother would have to do, too.
As the week progressed I saw that they were having trouble with the most basic things such as turning it on and off, adjusting the volume (my mother is hard of hearing) and charging it. One thing I did try a couple of times was using something called FaceTime which is the Apple equivalent to Skype or video conferencing. The FaceTime application came with their iPad and I downloaded the App to my Apple laptop. Personally I found it very easy to use, but my parents struggled a bit. They had to learn how to stand the iPad up in order to see the screen and to adjust the volume so that it was all the way up so that my mother could hear me. Once we got it working, my mother was very pleased with it. She does not really like using the telephone. She likes to be able to see the person she's talking to and this program allowed her to do just that. I told her that this would be great to use in the coming months instead of using the phone. The only glitch in the whole thing is that the program takes WiFi and they do not have a WiFi hotspot in their apartment at home. There are some WiFi hotspots in the elevator hallways and in the library at their retirement community, so they would have to bring the iPad there in order to make a connection with me until they got WiFi in their apartment. I have my fingers crossed that they will go ahead and do that soon.
Otherwise, the week went quite well. I took on most of the responsibility for taking care of my parents shielding my brother from some of the stress of it. But I found that the stress was not so bad for me. I attributed some of that to lowering my medications. About three weeks ago I saw my psychiatrist and asked him if I could begin to lower the antipsychotic drug Abilify that I was taking at the highest dose, 60 mg. He said yes and told me to halve it by taking one 30 mg tablet instead of two. I was surprised by his readiness to reduce the amount by so much so quickly, but I was willing to give it a try. One of the main reasons why I wanted to reduce the Abilify was that I had been having a lot of trouble with anxiety for several years since I had been taking the drug. I found out that anxiety was one of the side effects of it. I've come to conclude that this was the case because in the last three weeks my anxiety level has nearly disappeared to the point where I stopped taking the anti-anxiety medication Buspirone that I was supposed to be taking three times a day. I didn't like that drug either, though it did help a bit, because one of its side effects is blurry vision and I noticed that that was happening to me after I took it.
What I'm finding, through trial and error as is the case for most of us taking prescribed medications, is that a higher dose of medication is not necessarily the best to reduce symptoms. It is very hard to judge accurately because biochemistry varies from person to person. The scientists/doctors do not know exactly how the anti-psychotic and anti-depression medications work, just that for some people they do work. This is unsettling and means that each of us has to fool around with the guidance of our psychiatrists, trying different drugs at different doses. Sometimes drugs that have worked well at reducing symptoms for years suddenly become ineffective forcing those affected to try different drugs. And it all takes time, sometimes months to get to the right dose or combination. On top of that again there is no guarantee that that will work for years at a time. I am relieved that I can lower the Abilify, which has not only reduced anxiety but has reduced the frequency of the voices that I hear, because I was at the very highest dose with no leeway.
So at the lowered dose I was better able to handle the stress of going to the Grassroots music festival and of taking care of my parents while they visited. This year has been one of the best years all around since I got so ill in the Spring of 1998. I also attribute that to reconnecting with old friends online and to making a new in person friend (Sam) in my community. For so many years I have lived in isolation, even before I became psychotic, and now I have rejoined the human race. What a wonderful thing. My circumstances have gone from truly desperate to very good, even joyful at times. I am glad to be alive and glad to have the people I care about alive and well.
My parents had a good time. We took about three road trips, one to a Subaru dealership in a suburb of Rochester. My present car is about eleven years old and it is time to get a new one. I found the car I wanted right away and will be getting it very soon. I'm really looking forward to the peace of mind an all wheel drive car will give me during the hard winters we get here. My mother said she was very happy and relieved that I would be getting this car because sometimes she worries about me. A couple of days after we looked at the car at the dealership, my present car would start but not stay started and I had to have it towed to the shop I have gone to for several years. Turns out there was nothing really wrong except there was water in the gas. I didn't know this but sometimes the gas you pump at the gas station has some water in it and causes this problem. It's never happened to me before, but it firmed our resolve to go ahead and get the Subaru.
Because I wasn't exactly sure if my car was up to driving my parents to the airport, we asked our friend Richard to take us up. Luckily it was a Sunday and he had the day off and could do it, so we all went up to Rochester. We stopped off at a very good Thai restaurant and treated him to a good meal and gave him some extra cash for his trouble. A couple of hours after I got home I got a call from my father saying that they were still at the airport because JFK was closed due again to bad weather. I told him I would reserve a room for them at a nearby (within walking distance) hotel until they could leave the following day. Normally I have a strong aversion to using phones; I get very anxious, but this whole trip I was able to use the phone to call my parents and make reservations. I've been getting better and better about using phones especially since I started talking on the phone to my childhood friend Rita every week or so. Thank you Rita! Anyway, my parents did get back to their home in Florida the next day, thank goodness.
It was great to spend time with my parents. Though they tire much more easily now, they looked great and I'm hoping they live in good health for a while longer. My father has a rare, but treatable, form of leukemia. Five years ago he went through chemotherapy. The doctors said that he would have to be retreated in five years, so that what he did before he came to visit. He responded to the treatment though he continues to bruise easily. If all goes well and he survives, he will be treated again in five years. Till then I'm hoping to stay in closer touch with both my parents using FaceTime once or twice a week. That's another change for me because when I was sicker I was not good about keeping in touch, but since I started sharing my car with Sam, seeing her each week, I also started to call my parents faithfully on Wednesday evenings.
One last thing: I found out last week that a couple who I met three years ago, who suffer from mental illness but are in a firm recovery, went through the NAMI (National Alliance On Mental Illness) training to start a mental health support group nearby. It is scheduled to start hopefully in September. I am excited about it and very grateful to them for having the stamina and dedication to do this for our community. A month ago I was seriously considering yet again starting a support group in my town, but now I think I will dedicate myself to this new group. Not only will I start to get the support I need, but I think I can do some good for others directly. If after six months the group goes well and I learn the pattern and organization of a NAMI group, perhaps I will go through the training myself with someone I meet in the group and eventually start a group in my town. We shall see.
A Recovery Blog
This blog is about my continuing recovery from severe mental illness. I celebrate this recovery by continuing to write, by sharing my music and artwork and by exploring Buddhist ideas and concepts. I claim that the yin/yang symbol is representative of all of us because I have found that even in the midst of acute psychosis there is still sense, method and even a kind of balance. We are more resilient than we think. We can cross beyond the edge of the sane world and return to tell the tale. A deeper kind of balance takes hold when we get honest, when we reach out for help, when we tell our stories.