be here now

I have a neuroimmunological disease called ME. There is no treatment to date. For a very long time it's existence wasn't taught in med schools and there are just a handful of doctors who know about it or even believe it exists. The effects of the illness are pretty horrendous: sensitivity to light, muscle pain and muscle fatigue. It can be as bad as muscle paralysis, not always permanent but still very disabling. The most severe cases lie in the dark and can't even be cared for. I try to spread hope and support. When I fell ill I lost many abilities. I learned to crochet and made a small blue doll. My husband would shoot photographs of it in the "surrounding of the day" which could be anything from a crate full of veggies, to a flower bed or statue in the park close by; just that the doll was somewhere in the picture. I shared a few photos on Facebook and my friends loved the idea that the doll was where I couldn't go and that it gave me a chance to take part in everyday life. Soon people from the ME community asked me if I would make a doll for them, and so I did. They are called "MEmis" now. A friend came up with the name. Nearly 200 "MEmis" later I got an email asking for a "MEmi" for someone who is a hardcore ZOX lover. In fact, that was how I was introduced to ZOX. I made one in a black hoodie with bracelets. I don't sell them, so the woman asking for it sent me a thank you parcel full of goodies, amongst them three ZOX straps. While researching about ZOX I ordered one because I loved the idea. I chose a simple yet beautiful one. She chose perfect ones too. "Continue" has a ";" on it and a wider meaning of "I chose to continue" or "My story isn't finished yet". Many people with ME end up killing themselves because they suffer and have a hard time getting basic care. Many are even disbelieved by their family and friends because they just can't imagine that there are illnesses that the physician knows nothing about. And the ones who don't have to make a conscious effort to deal with symptoms, marginalization, poverty and more are the ones choosing to continue. So this one had me in tears. I have had contact over the internet with all those people and each year I learn one has ended his life. I do understand why and still feel so helpless and sad that they didn't have the means to hold on. This year was exceptionally bad. It was not 1 but 22 people whom I knew of, 5 mutual friends, 2 good friends, 1 I loved more than I could tell you. She is fierce and strong and wonderful. I wish she could have been one of those who chose to continue but I try to respect her choice as well. The "Be Here Now" strap is my formula for happiness. I have lost the many ways people make themselves happy or at least ok, due to my illness. But somehow it seems logical that if I just have myself and my senses, though altered, I am still able to perceive stuff and enjoy it. And I can't dismiss experiences for being too small or irrelevant. In there are crumbs of happiness. You can tune into those and feel it with all that you've got. It's like the essence of many meditation traditions. It can help you cope with heavy stuff. It really does. "I Can" is the strap that will be my next challenge. You probably can guess by now that what I can't do is quite pronounced in my life. But it is absolutely senseless to tie yourself mentally to something you cannot change at the moment. It is way better to enjoy and celebrate your abilities. And of course I've got some. Even something like breathing is an amazing ability. Daily frustrations get me every once in a while. So it will be great to have something that I will lay my eyes on occasionally to pull me back from the negativity. I had a nice messenger chat with the woman who sent me the thank you parcel, just wanting to thank her and tell her that she chose the perfect straps. She said she chose those three and that she finds the "I can" one all the more important when you are dealing with disability (by birth or acquired). She is a medical doctor too. I think this was the best prescription I ever got. Thank you for making a great idea into what it is now so that many people can wear their daily inspiration on them. I surely do.