I don't usually write about my lessons as I'm learning them. But it's strangely comforting to be able to, and I guess I'll be putting that on my gratitude list for today. Many of you who know me well have heard me complaining about not being able to chew any food, speak for long periods or on a more personal level, sing my prayers or chants that really help me connect to that source of power within me and feel all that love within. It's been two months now, so essentially the entire course of the summer that I've been on a diet of mush, and had to limit my means of expression because of the pain I was experiencing after a tiny, little filling I had at the end of June. After the third dentist appointment and the constant denial that there is anything wrong, my heart already began to sink as that very familiar feeling of how my journey began started to creep up on me again.
It has been a humbling experience to realize I am still that girl that got a virus in 2014 and went to the hospital expecting the doctors to fix it - and 4.5 years later am still battling each day as I accept myself and my symptoms and all the limitations and difficulties I face as normalities each day. Others may not see it, either because they choose not to, or because I don't show it, but even I get tired sometimes. No pun intended. 5 dentists, 2 months and 9 appointments later and the blank faces of doctors saying there is nothing more they can do, I have realized this is actually yet another bizarre symptom of my Chronic Fatigue Syndrome. When the first dentist began to blame it on that, I didn't want to believe that could even be a possibility. How could Chronic Fatigue Syndrome cause my tooth to hurt this badly and prevent me from eating - after a filling! Yet here it is, the truth after Dentist number 5 who has repeated this final conclusion after saying she is no longer willing to continue to adjust the tooth. Prognosis? The black box that is Chronic Fatigue Syndrome. I shouldn't be too surprised, because of the range and multitude of symptoms of this very complex disease. The difficult part is to accept it really is that, and even harder, that there's nothing those doctors can do for me.
Like I said, I have been humbled yet again back to the very beginnings of this very unreal journey I've been on. And I guess the reason I share it in this moment as raw as this may sound, is for all of those that have doubts of those who suffer from chronic illness like mine, who don't believe it's real, or think there must be something wrong with the person who has it, something they just aren't doing right or doing enough of or else it would be better - I just want to share this very honest story of a girl that just like anyone else, had a tiny filling done and now faces a tooth pain that now impacts her ability to eat solid foods or speak for more than a few minutes without feeling pain, with no prognosis of when it'll get better or how. The same girl that had a virus, a common one, just like 95% of the human population, and 4.5 years later it just never got better. It's easy to categorize people like myself into this black box of mystery - of "that wouldn't happen to me." Or that isn't really real. Or it's in her head. Or she's just tired, what's the big deal - I'm tired. Or she just needs to try harder and it'll all be better. Or even worse, purposely ignoring it entirely, pretending it isn't there. In effect, pretending I'm not there - an inconvenient truth to your reality. Seeing me the way you want to see me, holding me to expectations you have that exist only in a reality you feel comfortable in, within the realm of what your logical mind can understand, rather than loving me and accepting me just the way I am, right here and now.
I share this story to help people understand, we really aren't all that different. None of us are. And to remember our humanity, our love, and our compassion that transcends even the limits of the mind - that just to be ready to feel what the other feels, and truly see from their eyes, and believe them - can be the greatest gift you can ever give anyone. It's one I try to give myself every day, although on many days it is still harder than others.
I know you're just afraid. So am I. But somehow, I feel it's easier to make it through the dark when we journey together, rather than by pushing one another away in fear, denial and distrust - when we remember love is stronger, and it's ok not to know all the answers. Because we have each other. Courage, dear heart, courage in the face of darkness is what will lift us all up, as one.
What is the lesson in all this? I've been climbing a mountain that I didn't know existed, one that just simply rose before me out of the shrouds of mist one April years ago - and here I am trekking and climbing as I find a way to rise again, and again, despite the many obstacles in the way. I am most proud of myself for this - for the one thing that has been in my control in all this time - how I respond. And how I choose to take this experience as an opportunity to learn and grow despite the obstacles in the way that want nothing but to throw me off this mountain. Sometimes I think this force is the training that makes my muscles stronger, the preparation that is required to even get up this mountain. The darkness that is required for me to see the brightest stars. I've been climbing for a long time now, and I am quite tired, as much as you may not see it. And now with these added symptoms, it feels like a 50-pound weight just landed on me to haul up this mountain too. So, to all of you facing this (which we all are in many ways), I share this: How do I feel right now?
As tired, and mad, and in disbelief as I can be, 4.5 years later since this bewildering journey began, I feel my courage, and it says "OK, and what else you got?" Because the only thing I know right now is nothing can break me. As much as it seems there is something or some force trying to with all its might. Getting me when I'm worn out from this cross-country trek I've been on, rising from being bedridden for months, rising from losing all sources of income, rising from the judgement and difficulties in my relationships and society - and now my inability to eat, speak, pray - (hmm isn't that a book?) Well here I am asking - What Else You Got? Because you can't break me. Yes, I am that Phoenix...and as Maya Angelou says, "Like Dust, I'll Rise." Somehow, somewhere, sometime - I will rise.
Sometimes we are given a test of faith. And that is what I am learning from all this. And the only way to pass is to surrender it all to that source that knows all - the one we like to believe is at fault for all this. The one we want to say doesn't exist for all the problems that have fallen on our shoulders. I say this, I am learning to surrender to that which is greater than me, which pushes me to the place where I know nothing can touch me even if bricks are raining down on my head. That sometimes, a test of faith is all that can ever teach us such an invaluable lesson so we may learn the one thing that we are here to do - to know our true selves. Not the selves we have created from the need for comfort or a desire for perfection - but our true, magnificent selves, that can only come forward if we would only just surrender.
So, I surrender, I surrender to that power within so I may rise, and pass this test of faith by knowing all that I am - and all that I am not. And let it transform me into all I can be.
Thanks for listening,
SDS
