here is what you should know about me. that i am seriously ill with myalgic encephalomyelitis, a disease the debilitates me across all realms – physically, sensory, cognitive. that there are no treatments for it. & since it is so complex & poorly understood, there is no real way of knowing how much life i may able to reclaim. i now understand that have had it for most of my life, finally going severe in spring of 2014 while under trauma & stress. since then, i have continued to decline.
i had a wild & broad & deep love for this world & for humanity. my areas of interest.. spanned too much to detail. nature, culture, art, literature & poetry, music, film, photography, cities… philosophy, architecture, spirituality, social theory, history, biology, ecology, economic development, social advocacy… to name.. a few..
i lost the ability to read & write in 2007. the books above.. never were read. though i remember that year i still read wharton. & paul auster. the diary of soren kierkegaard. the poetry of alice notley & czeslaw milosz. walt whitman.
this is me 2 years ago on my 50th birthday. i was moderately ill then. but still able to walk my dog. & talk. & sit by the water. & sometimes have beautiful visits with dear friends. i could run errands to small stores. & cook a meal. & i felt blessed every minute.
i owned so few things. a few pairs of jeans. boots, tennis shoes, sandals. i surrounded my life with art. & objects from nature. & gifts given by friends.
7 years ago, i got a puppy. even though i was so ill already, i was able to train her & spend so many wonderful moments in nature with her. she brought true joy to my life & still does, though i have had to give her to a friend who can best care for her. that was so very hard at first. but it still allows me to see her – she lies with me at my side now. i see how much joy both she & my friend share with each other. & i feel like that is a blessing all the way around. it is a gift that she is still in my life. & i am grateful to have been able to give my friend such an amazing gift of this wonderful dog.
the truth is.. my entire life, i have hated having my picture taken. even as a child i often held my hand up near my face. & i still do it… but this is me, now. in my world. the day before i turn 52 years old. it can be hard for me to see photos of myself now because i can so clearly see the depth of my illness in my eyes. even though i experience it at every moment in some way. & most of my moments are spent in rest. with no cognitive or sensory processing. so writing this .. is a lot.
i started this blog as a way to still be connected to life outside my immediate room. i am alone, without much human contact or ability to interact. i have noticed over the last months that my ability to be online & interact is diminishing in the same ways that the rest of me is. the blog i think.. is meant really as just part of the next step on my path – a solitary place to catch fragments of meaning..to seek spiritual guidance as i seek more & more to shed sense of self.. while trying to allow for what my doctor once said to me, “the world is still at your fingertips. let it come to you & bless you.” (the photos are my own – so i suppose there is that desire to still connect with the creative impulse, that used to come through writing, but now comes, as able.. through the lens.)
as life recedes further.. & i recede further from it, i am trying to still allow this.. trying to lightly be with what is & with the uncertainty & groundlessness. to let beauty, love, joy, gratitude, peace, compassion be the things that still guide me each day that i am still granted life.
i don’t know if one really transforms or transcends suffering. but i pray that i can do what rilke said – “if the drink is bitter, turn oneself into wine.” that i somehow can make the space for it to sit alongside all that is still so beautiful about still being alive.
the title of this entry – are the words of my friend/doctor/bodhisattva. i am forever grateful for her compassion, guidance, generosity of spirit, & noble humanity.