Life can change in a moment, as quickly as a breath is expelled from our lungs. Some changes are permanent – as with one final exhale – biological life ceases to be.
Most exhales are not as dramatic as death but the ceasing of the way things used to be. A change, a season of loss, a rediscovery, reawakening, and reimagining – again.
Chronic illness is such a change. In the course of an exhale what was ceases to be, and what is, defines a new beginning.
Jesus expelled his last breath with the words “Father, into your hands I commit my spirit.” With his dying words he was in communion with God. Suffering draws us closer.
Or drives us away.
I held that change closely since mid-January when I found myself housebound, mostly bedridden. The month of March is Auto-Immune Awareness month, and ironically, on March 1st, I was diagnosed with Sjogren’s Syndrome. This Month, April, is Sjogren’s awareness month. It’s time in my commitment to authenticity and advocacy to speak up about the millions of women undiagnosed and misdiagnosed with auto-immune disorders.
I had made alternate plans for my future to work from home. I was in a doctoral program with hopes of teaching. I love teaching.
I have to work. I have school loans. Dave and I don’t have any retirement after raiding a large family and my working as a “professional volunteer.” Non-profit development /management is not my strength- people are.
“I’m planning on working until I’m ‘One Hundred and Six’ I’d tell others with a smile.”
For a decade, as random and bizarre symptoms increased, urgent care and emergency room visits also increased. Debilitating pain sometimes left me unable to drive or function. Time lost at work. Doctors told me, “I can give you muscle relaxants.” Or…. “Over-active bladder…eight pregnancies…” “UTI…” “You’re getting older.” “You’re almost 60…”
For the last three years I’ve asked Dave, “Am I just a hypochondriac?” “Maybe it is all anxiety?” “In my head…” No,” he would reply. “This isn’t you.”
The last three years it was even easier for doctors to blame things on the stress of working in healthcare. I instinctively knew life was changing for me but I blamed myself. I judged myself.
“I just needed to get in ‘better shape’.” Exercise more.
A difficult thing to do when I sometimes had to go home with shortness of breath after walking a short block.
So here I am.
I have the diagnoses, it’s awful, and loaded with physical and neurological symptoms like dysautonomia which causes crazy heart stuff, muscle weakness, vertigo, and blurred vision. Cough. Dryness. Breathlessness. Debilitating fatigue. And more.
And yet, it’s OK.
When I am weak, God is strong. God is ever present. Closer than ever. He/She is my best Bud. I’m grateful I’m not sick and fleeing a war torn country. I have access to medical care. I’m starting meds tonight with hope for better days.
I’m most grateful for Dave. He’s been amazing in his care and support, working from home to care for me until I can once again care for myself. He lost weight in the process – something he couldn’t afford to do in his efforts to care for me and neglecting himself. We’re remedying that now.
Today, Good Friday, is a reminder that darkness preceded the dawn. There has always been a Light shining in the darkness.
Chronic illness, auto-immune disease is one more thing I can add to my empathetic tool box for spiritual direction/companionship and coaching. And maybe, just maybe I can partner with God in helping some else see the Light that shines in darkness.
I hold a glass.
It’s enough.