Tonight I officially turned down an offer of financial aid for a project that is very important to me. Without going into detail (I’m trying to keep this blog non-technical) it is a communications system I own. It facilitates routine and emergency preparedness radio communication in the area, allowing small portable two-way radios to communicate over longer distances by automatically relaying the signal. It’s something I established in 1997 as a service to others. It has been one small thing I could contribute to the world. It needs some maintenance which I am ill equipped to afford. I turned down the offered assistance because my life is too unstable. I can’t accept money to maintain something that may or may not exist in a year, or two, or three. The future of that system is tied to my own, and I have no idea what that future will be at this point. Turning down that offer was like taking a sledgehammer in the stomach, but I had no choice.
I feel like I’m running out of time and options. Medication has never yet done anything but make my situation worse. Maybe something new will be discovered eventually, but for now that doesn’t seem to be an option. I am learning to do things I never could before through the case management and daily living support services, but progress is too slow. This is a time limited opportunity. I’m starting to have serious doubts about coming out of this with the ability to maintain a minimum necessary level of function for independent living.
What have I really gained in these 15 months? I can now use a debit card to buy gas at two specific places. Now that I buy gas very seldom (for yard machines) it remains to be seen whether I retain that new ability or not. I can use a specific debit card to buy food at two stores. I can make cash purchases at two, maybe three smaller stores that would have sent me into total panic before. I’m able to answer the phone more often but still not doing well with outgoing calls. Some of my physical health issues have been resolved, while others have been relegated to the “nothing I can do about it” category. While I am grateful for these tastes of freedom, these things are not enough. I need a far broader range of function to stay out of crisis.
I’m starting to regret becoming a homeowner. I can finally control my living environment which is critical for me. But now I have no means of obtaining materials to work on the place. My new case manager offered help. He thinks we are going to the local building supply place this week but I don’t see that happening. I’m very anxious just talking to him in my own home. I can’t begin to imagine going out in public with someone I’m that uncomfortable with. It’s not his fault, as I mentioned previously. The worst part is I can’t even tell anyone this new person is not a good fit for me. Today my daily living support services worker offered support with the problem of getting building supplies. It remains to be seen whether we come up with a plan that works.