Before I begin on todays topic, I need to finish up on yesterday's. I got tired and distracted and forgot about a bunch of the other parts of the protocol. It's like that for me. I didn't mention the various topicals, drops, injections, both sublingual and IV, both push and drip, the foot soaks, the detox baths, the multiple showers on tox days and the complete decontamination procedure required when returning from an 'outworld' excusion or an exposure. I'll work them in some other time...
On to todays topic:
Positive events are mandatory. The lives of TIs are grueling. So much pain, so much loneliness. We spend the majority of our time alone. Interactions with people who interface with the outside world are imperative. Human beings die from loneliness. This is a medical fact so well recognized that Time Life books included a study (done on monkeys) in their series. I remember reading it as a child. The baby monkeys died when put in cages where they had no interaction with others. ( the monkeys did slightly better with crude wire models of mothers and better with more life-like models.) Experiments in Nazi Germany proved the same thing. Even prisoners in solitary confinement, still get some amount of human interaction on a routine schedule. TIs get less than that. President George W. Bush signed a presidential order making it against the law to isolate the chronically ill, so detrimental is it for their health. Isolation; loneliness, grief, sorrow. These things lead to depression and can kill.
We have to be proactive in our recovery and the ordering of our lives. We have to set out a plan for including not only human interaction, but positive daily experiences, events and reinforcements. They need to saturate our lives.
We've all heard the saying that laughter is the best medicine. We must find ways to cultivate laughter and humor. Many of us can no longer read. Print is toxic. Some can't use computers or watch TV. The electrical emissions harm them. I was once so toxic that time on the phone was limited. It burned my ear. These are barriers that we must get over. We have to find a way.
Setting a goal, like a visit from a friend is a huge positive experience. Our social interaction is precious and very rare. It will take a lot of time and energy for us to pull it off. We will risk harm. It will be entirely worth it. Without interaction we fall into depression. The visit, is as much a part of our medical protocol as the meds and detox treatments.
Other examples of positive things are like the two I mentioned yesterday. The bowl, and the box. They remind me that I am loved and they bring beauty into my world. I have TI friends that enrich their world by decorating for holidays. It gathers the loving memories around them and sustains them through very tragic and painful day to day lives.
One of the saddest things that happens to TIs is that once they succumb to this condition they discover that the majority of their possessions (the ones with memories) are now toxic to them. They can't be out-gassed. They have to be discarded. Many of us suffer such all encompassing brain damage that so often, with out a physical trigger, our memories are lost.
I have a friend, who at the same time she was crashing into Toxic Injury, her mother was dying of cancer. They were very close. It was heartbreaking for her to realize that she had to get rid of everything she couldn't out-gas. Not only the essence of who we were gets stripped away, but our memories and comforts are stolen as well. We have to substitute new ones.
So we have to find and implant new, safer triggers into our lives. I'm lucky. I can do computers - limited. And TV - limited. I put all my photos on my computer. (printed photos are toxic) I have slideshows and movies that I can watch on both the computer and the TV. I'm also lucky, I can afford it. Many TIs can't. I think this is tragic. Computers, internet, phone, etc. these things should be considered Durable Medical Equipment for the toxically injured. These are the safer methods that we use to interact with the outside world. It's where we socialize and shop. Unfortunately, the traditional medical community doesn't necessarily see it that way. So many of us, go without. (This is one of the things the ' Beacon of Hope does. When they have funding, they purchase these kinds of DME for the toxically injuryed.)
I get myself gifts, and I spread them out. I don't want all my gifts at once. I want to milk every ounce of enjoyment out of them for as long as I can. I noticed when I was raising my children, the only grandkids on both sides for 10 years, that at Christmas time they had so many presents, that they didn't actually enjoy any of them. They just tore off the paper in a marathon of 'opening.' So, my birthday was in July. I planned for my gift for 2 months. I researched it. Learned about it. Got ready for it. Remember the old saying, "Having is not nearly so nice as wanting."? Well, when you just get a gift quickly, it takes away the fun of wanting and anticipating. So my gift went from receiving it in one day, to savoring it for months... I finally got my gift in October. It was well worth the wait and I'm enjoying it so much more for having not gotten in right away. This gift has 'upgrades.' I'm savoring those too. Not rushing into having. Spreading out the joy.
Don't get me wrong, surprises from others are beneficial and joyful. Like the eggs that a friend brought as a house warming present. My chickens are old and are no longer laying with regularity. He has nice young hennies. I'm still enjoying those eggs. Another gift he brings is maple syrup. I look forward to that "giving" all year long. It's more the loving gesture than the item itself. And the fact that I can savor it, for months in advance, and am reminded of his friendship everytime we use it, well thats just all the sweeter.
The next thing is learning something new. It should be something fun. When I first got diagnosed, and overnight my world crumbled into bitter ashes, I had to resurrect my life and recover some meaning. I knew I could no longer do the things that made up me. I was enraged; I was horribly depressed. I reached inside and found the things I'd always wanted to do, but hadn't had a chance yet. Twenty years before the crash I'd taken a spinning class in college. I'd always planned to get back to that one day. Now I had the time. Now I do that and am pursuing a Certificate of Mastery. I'd also done a smidge' of weaving. That was fascinating. I hadn't had time or money for that. So, I began learning to weave and bought a loom. I've learned additional foreign languages. I've studied toxicology, medical conditions, billing and coding, the ADA and legal procedures. Some of these were not fun, most are fascinating. I found that with this condition, I'm required to be an expert on everything. The important part is setting goals and achieving them. The success of overcoming obstacles is an endorphin rush. We need that. Every accommodation, every need, is fight. We need positive reinforcement of our own value to keep going.
Finally, for todays discussion, I volunteer for a charitable foundation. The "MCS" Beacon of Hope Foundation. It is important for us to do something, even if it's small, for others. Doing something for others, makes our own trauma less significant. It takes our focus off ourselves and our pain. This is important because when we're not distracted from our own suffering it becomes amplified. A self-centered world view is deadly. Because we are so isolated it is predictable that our focus would be on self. When we do that our world begins to spiral downward. the spiral, like a whirlpool, becomes tighter and tighter, narrower and narrower. Eventually, nothing will exist in our altered reality but, our own pain and suffering. We must be distracted from that. We must become other's centered. We must help others, where we can. It's mandatory.
Surprisingly, this is the most rewarding choice of all. There is a tremendous positive physiological response that the human brain experiences when helping others. This too is medicinal. It needs to be a part of our medical protocols.
I used to tell my children (and students) a story that illustrates this very nicely...
Next time: Warm Fuzzies and Cold Pricklies.