Hey, beautiful world! I’ve been away from the blogging world for about a month now, but am excited to be writing again. It has been a stormy couple of weeks and I am on the brink of even more trials and transitions. Yep, late summer has been a season of change. In the heavy, stagnant heat of August, new life has come unannounced, like the wind that shakes the palms at twilight.
One big thing that has not changed is my physical health. Nope, this wretched case of CFS/ME has not budged a bit. It’s like I’m clawing at a twelve-ton boulder lodged in a slot canyon, just scraping like hell, fingernails worn down and bloodied. No progress, for nearly five months now, which brings the overall course of my illness to just shy of fourteen months. Pain and fatigue stand in the doorway, every second of every minute in every room of the house. Can’t get out. So, that’s a bummer. On to the changes.
I successfully applied to four low-residency graduate programs in Writing. The low-residency format means that the two-year programs are chiefly online, but twice a year there is an on-campus seminar, which is usually around ten days of workshops and interaction with the professors. The application process in itself was so involved and demanding that I a) deserve a degree just for completing them b) have doubts about this investment c) am not sure I can handle graduate school with CFS. One of the classic symptoms of CFS is mental fatigue and fog, which I experience, even if it ebbs and flows in severity. So, that plan is up-in-the-air, but I have some time to think about this decision, and I have faith the best plan will reveal itself.
Another change that has been building for some time is that I am ready to be vocal about my illness and work to advocate for CFS/ME awareness. I am coming to terms with the fact that CFS is my reality, for the foreseeable future, and not a phase that will come and go and can be “moved on from.” And while there is a list of things I cannot do that could stretch from here to Bangkok, there are still a few things I can do that might make a difference. I am aware of a world of suffering that I used to know nothing about. It is insane that CFS/ME is not given adequate research funds or attention by the medical and scientific world. I believe the time will come when CFS goes from a controversial disorder to a disease that is taken seriously, and thus a treatment will be pursued diligently (similar to how HIV, Alzheimer’s or Parkinson’s have moved from vague conditions to household terms with well-researched treatment plans). I hope we are on the cusp of this era for CFS, and I want to do what I can to help raise awareness. In all transparency, I have been reluctant to put a name on my life-wrecking illness, because CFS is misunderstood by so many, and I don’t want to be seen as overdramatic, crazy, lazy, or attention seeking. But I am past this ego-driven fear. I have confidence that, as I express my situation in a genuine way, the only possible conclusions will be: a) CFS is a serious, life-altering medical condition or b) I am mentally ill. And to be honest, I am not concerned with the people who will dismiss me, because the compassion and awareness that will be made possible with others means infinitely more.
Also, I have been realizing- begrudgingly at first and then with more acceptance- that I can no longer live independently. It is physically and emotionally draining to do the minimal things necessary for maintaining my apartment, my dog, and myself. The anxiety of chronic illness (including physical pain and an uncertain prognosis) grows wild and unruly by days and days of solitude. I am not sure what my next situation will be, but I know I will need to make a change pretty soon. I will have to say goodbye to the normal-twenty-six-year-old-world I was trying to build, because the hard, cold, un-moveable truth is that I am still very sick.
On top of all of this, ten days ago I found out my dog has a cancerous tumor. She is recovering from having it removed right now, but it looks like she will need localized radiation to try to clear the cancer. I must admit I wonder sometimes when my life will stop so vividly resembling a nightmare. My beautiful dog, Jezabel, has been in my life for six years. I got her when I was twenty and living in Oregon, and she and I have travelled through many different worlds together. This last year of illness, especially, has drawn us so closely together that it is as if she is a piece of who I am, a treasured appendage. Jez was there with me in my life before illness and she is intimately involved in my daily life, too. She is the only one that has really been present, daily, on both sides of my reality. She is such a wonderful, gentle, loving creature, and my closest companion. I pray that she has many years ahead of her, and that she won’t suffer. It’s almost too much for me to think about, so I am just going to do the next right thing for her.
Amidst these transitions, the most overwhelming change is happening inside of me. My spiritual belief system has been uprooted and made new! I’ve moved from casual faith in a mysterious, unknowable higher power, to believing in God. This change unraveled rather mysteriously over the course of a few weeks, during which I had decided to spend a lot of time reading Scripture and praying, without a specific agenda in mind. The more I studied Jesus and The Bible, the more I began to feel and understand God’s presence. I have rejected Christianity for my entire adult life up until this point, so my faith is a surprising revelation that is at once unsettling and richly affirming. It’s not something I can explain, intellectually, as God is a matter of heart and not of mind. I would love to correspond one on one about my shift of faith with anyone who is interested. As this relates to chronic illness, the implications are far-reaching and yet to be discovered, but so far I am more at peace with (physical) suffering and (perceived) solitude. I no longer see myself as the captain of my ship, and this perspective is tremendously humbling and comforting. Perhaps it sounds as if I found God out of desperation, finally stranded in pain and powerlessness. Certainly. What a joyful discovery!
And that’s a wrap. I will be writing frequently again, shooting for my weekly posts. I am sending nonspecific but heartfelt prayers for LOVE and HEALING to all of my readers and friends. I hope that positive changes happen for all of us, and that we will have the patience and inner-peace to endure the days between.