Hey now, little speedy head
The read on the speed meter says
You have to go to task in the city
Where people drown and people serve
Don’t be shy
Your just deserve
Is only just light years to go…                                                      

(Find the River, R.E.M.)

It has been an age since I’ve been here…to log my thoughts and emotions in the world of rare and chronic illness. Over the months, my mind ignored the reality of “no time to blog” and internally spun the narrative of my life in my head as I slogged through daily life.  That works until I reach the point I need to purge the fear, confusion, exhaustion, and occasional joy so that I have room to keep feeling, keep going, keep giving what I can to those I love.

Although it may not sound like it, I am an optimist. I think it’s the crashing fear and sadness of life that drowns out the small voice of hope. And when people you love – daughter, husband, mother, brother, sister, cousins, nephews, and dear friends – are struggling, then the sorrow just expands exponentially. I try, every day, to look for the end of pain, the start of an upward swing, and small bits of humor to adorn my life with a little light. I do understand the power of gratefulness; I’ve trained myself to default to “counting my blessings” when I’m standing at the cliff of blackness that has appeared suddenly, unexpectedly, so often in my life. But even the default settings need a reboot once in a while.

Me, my thoughts are flower strewn
Ocean storm, bayberry moon
I have got to leave to find my way
Watch the road and memorize
This life that pass before my eyes
Nothing is going my way

The ocean is the river’s goal
A need to leave the water knows
We’re closer now than light years to go

Since I wrote last, Sophie has developed a new illness – Mast Cell Activation Syndrome (MCAS) — that is the third leg of the Ehlers-Danlos, POTS, MCAS trifecta. This one seems so far beyond my ability to grasp…understanding the number of different systems it affects, the confusing list of symptoms THAT CHANGE OVER TIME, and the different treatments is like juggling frogs. I can’t do it. Yet. I will, but this one is going to take more time than EDS and POTS put together.

Add to that some of the new symptoms (or drug reactions? we don’t know…) are awful for her and terrifying for me. Her heart rate will slow down to 50 bpm, causing her to feel nausea, struggle to breathe, pain in her chest, confusion, etc. It often happens late at night and, as her cardiologist and immunologist are trying to figure out the cause (and taking way too long), they’ve told me to “watch her, make sure she responds to your voice, watch for any changes in cognition, know how to detect regular shock and anaphylactic shock, if you aren’t sure get her to the ER.”  You can imagine just how frightening this is for Sophie and how vulnerable and panicky she feels when it hits. For me, I don’t fully sleep any more. I drift off and jolt awake. I sink into sleep but try to stay partially conscious in case she needs me or quietly calls out. It has been so long since I have gone to sleep at ease that I cannot remember what it feels like. Does anyone go to sleep willingly? I don’t know anymore.

I have got to find the river
Bergamot and Vetiver
Run through my head and fall away
Leave the road and memorize
This life that pass before my eyes
Nothing is going my way

As for me, I’m finally accepting that I too have a chronic illness. I have fought it and focused on others for so long that it seemed I’d be able to push it away out of stubborn force of will. Over the past 10 years, my stamina has decreased far more than regular aging can explain and the pain in my body is unbearable on days I must stand or work longer than usual hours. Having 16 teeth pulled was the first time I had to acknowledge my EDS. The dislocated knees, the painful joints, etc. I could push off as flukes or aging. Still, the most difficult symptom of all of this is bone-deep exhaustion. Each morning, I ache to stay laying down. It feels like I’m pulling against triple gravity to sit up and make my way out of the bed. It is a cognitive fog so thick that it takes time for me to recognize my surroundings. It is physically painful to wake up and emotionally I feel like Sisyphus. Pushing that damn rock up the mountain every day just to do again tomorrow.

There’s no one left to take the lead
But I tell you and you can see
We’re closer now than light years to go
Pick up here and chase the ride
The river empties to the tide
Fall into the ocean

I want to apologize to everyone I love for not being there right now. My mom. My sister. My brother. My dear cousins, Priscilla and Ronnie. My friends. I’m so sorry I’m not there more often. They need me (and I need them) but I cannot survive if I must focus on much more than Sophie’s needs and getting through each minute of every day so that we have my paycheck coming in. It’s literally that black and white. I’m like a body in shock…all energy goes to the core and the extremities suffer. Right now, my life feels in critical condition. And, right now I must survive.

The river to the ocean goes
A fortune for the undertow
None of this is going my way
There is nothing left to throw
Of Ginger, lemon, indigo
Coriander stem and rose of hay
Strength and courage overrides
The privileged and weary eyes
Of river poet search naivete
Pick up here and chase the ride
The river empties to the tide
All of this is coming your way


If you’d like to hear Find the River, click here. It is a beautiful song about the search for meaning, the one direction our lives flow, and knowing the next generation will also find their own way to the ocean.


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