On the way to the city (see previous post), Ben asked if I might consider selling my radio repeater to the club with the idea they would support it financially while I would continue to look after it and do whatever maintenance is required. This comes less than a month after I turned down a club offer to purchase a badly needed new antenna for it. Unfortunately the new proposal makes little more sense than the first. I’m unwilling to accept financial support for the system or enter into long term support agreements because I’m not certain where I will be or what my lifestyle will be in the not too distant future. Not to mention maintaining the repeater has often been a source of intense anxiety, even in some cases leading to outright crisis. It’s virtually impossible to work at that site without having an audience, which is bad enough. But moreover, landowner relations and occasional interference issues between other radio systems at the site have created immeasurable problems for me.
Having recently taken ownership of the home in which I live, giving it up is the very last thing I want to do! For the first time in my life I’m able to exercise real control over my home environment and make certain it is a place of safety and comfort. This place also (if somewhat marginally) supports my chief distraction and relaxation, that being my radio hobby. Yet there is the specter of being forced to move into some form of assisted living or at the very least an apartment where most everything is taken care of. In order to stay here, I need to either make major gains in the things I am able to do and the consistency with which I do them, or develop a long term support system to fill the gaps. On the other hand the alternate housing options bring unspeakable horrors. I think I can reasonably predict my overall mental state will deteriorate rapidly due to constant anxiety if I am forced to chose either of those options.
Ben suggests that my ham radio friends (I still have difficulty with that term since I’m not socially involved with these people to a level that in my mind supports that definition) may be willing to be that ongoing support system after case management and daily living support services end. I don’t feel I know these people well enough to ask for that level of support from them. Nor do I feel deserving. What do I offer in return? I don’t know how to broach the subject. It isn’t likely I would be able to approach these people and ask if they would help me survive in my current environment, filling the important gaps when I fail. Although all are somewhat aware of my issues (I’ve made no secret of it) I can’t help feeling they have no idea about the exact nature of my struggles. Do they know it is often the inability to make a phone call that land me in crisis? Or repeated failure to purchase critical goods or services?
The idea is not without merit. Unless I make a lot more progress in whatever time remains with current services, such a system of “natural supports” is exactly what I need to remain here and continue to enjoy relative freedom and a comfortable home environment. The truth is I am very interested in developing such a system but don’t know how to approach people about it or how to suppress the guilt that would arise from feeling undeserving. Actually, I’m interested in taking it a step further. I would like nothing better than to get out more, be around these people more, be more involved in activities. In essence, to have real friends, people to spend time with, do things with. There would have to be certain limits on activities, since some things will cause crushing anxiety and panic, which in turn lead to decreases in overall function. It is a vicious cycle.
It is something to think about. In fact, I can’t stop thinking about it. I wish I knew how to bring the subject up for discussion with each of them, how to explain the major obstacles to successful independent living, how to gauge their desire to help.
Hi Paul,
Today i finally managed to catch up with your blog. As always a great and helpful read, thanks for making this available. It was not a coincidence that I found the time today to catch up with it. I’ve had a couple of days with excessive anxiety and nervousness. My husband has been unemployed since january and though most of the time we deal with it ok, now and then we get very nervous about our situation. We’re also planning a trip to visit my family and this is very difficult for me, leaving my house like that. It’s always tough. Anyway I knew that reading your blog would help me and it did.
I have a few words and comments, hope you don’t mind.
First, I think it’s so nice of you to take care of Boo when this involves more anxiety for you. I agree that taking the carpet out may help a lot. Making sure to change air filters if you have them also helps in our house.
Second, I have to say that one of the things I really admire in the way you live your life is that even knowing full well the issues you may face by going out, you go and face them! I wonder if you realize how admirable this is! It is inspiring beyond measure.
Third, and the most important. I know you only by messages and reading your blog. And even so I can totally understand people trying to help you and befriending you. You are totally deserving of it. You are not only your issues and difficulties, and other people can see that probably more clearly than you do. They may be one aspect you have, those problems, but you have so many others. Your talent in writing, your ability with the radio, your kindness with your pet, your courage in doing the things you do although they are so difficult for you. I’m sure that those who know you personally see even more good things in you. I think those of us who have depression/anxiety etc, tend to develop this disbelief on how kind and understanding people can be towards us. I think you should give them a chance to help you. You do deserve it. I’m just not saying it, I really think so and I’m sure so does many other people.
Best wishes,
Nadia
PS. I re-read what I posted and first wanted to apologize for my mistakes. And to add that you are also a very generous person. It’s very generous of you for instance to have this blog. People wanting to help you back is only natural, when you are also willing to give and help them, as you do. I also wanted to add that I hope I don’t sound too sappy in what I write, it’s not my intention, I am saying this not out of any silly empty wish to make you feel better, I say it because I always had a preoccupation with justice and fairness, and when I write here I am only trying to point out the facts that show what I believe is fair and correct. Hope this makes sense!
Hi Nadia,
Thanks so much for your comments! I always appreciate feedback, comments, suggestions, etc. Every time I write a post I find myself wondering why I’m doing this. My life and my writing seem so boring and unimportant to me. I appreciate your comments, and I’m thrilled if my blog helps you in some way.
Financial uncertainty is scary and stressful to everyone. I would be very nervous about a trip to visit family too. I hope you are able to enjoy the visit and wish you well with your income situation. I think it is great you are planning the trip even though it is difficult for you. I have lost touch with almost all of my family and wish things were different.
Umm… mistakes? I’ve read your first comment to this post three times (twice after reading your second comment) and I still don’t see any mistakes! So don’t worry about it. 🙂
I’m thinking a lot about the offer of help from friends… but I will save that for my next post.