I know I promised CDC flu info this week – and it’s all next to me in a stack of papers. However- with so much chaos in the world and in my life – I thought I would share some reflections instead. And so I begin:

Over the years, I’ve written about primary immune deficiency disease (PIDD),worked as an advocate for patients,and struggled with multiple diseases myself. I’ve come in contact with some of the most incredible people,learned life lessons and witnessed successful struggles I thought were impossible to surmount.


On this journey, one of the most important lessons I’ve learned is that it is possible to be healed while not cured. I do not look in the mirror and see a sick person, but a whole person in body and soul. Living with chronic illness does not make me less- it actually makes me more.


I’m able to spend more time reflecting on life, my eyes have opened to the wonders and beauty of the world I never had time to see before, my heart has grown to allow many more souls and smiles in,my arms have opened wide enough to hold all of the loving and caring people I’ve met,and my mind has opened to the acts of bravery I see patients and caregivers perform. We all handle our illnesses differently, but one thing is common to us all. We are as brave as any warrior there is.


I’ve had the good fortune to meet many fighters and their families. I’ve seen how we hold each other together in difficult times, and I’m humbled by the strength and courage I see.  I’ve seen young patients fighting for a normal childhood, sometimes winning- sometimes not. I’ve met older patients who have learned so many lessons along the way. Their knowledge is invaluable and they become our teachers.

Patients in the middle year’s of their lives may be holding down a job- some while raising a family and struggling  with PIDD, and to them- I tip my hat. There are also those who live in a state of denial,and I do remember what a glorious state that was- so enjoy it while you can.


It was a difficult lesson to learn, but if I don’t take care of me- there is no room for YOU. I spend many days covered in books amd blankets- knowing this will then lead to many days playing and impersonating a healthy person.

Many of us have been fortunate to find caring healthcare professionals. They appear as a nurse, physician, administrator, specialty pharmacy rep, drug manufacturer or support group. When we find someone who actually partners with us to find the best method of treatment, really cares about the outcome amd treats us like humans instead of a chart number- we know we are fortunate. They make our journey much easier.

Thank you to all – patients, friends, family, healthcare professionals- for everything you’ve taught me and for everything you’ve been to me.

And I think to myself, what a wonderful world”

Back to the real world – hope this helps you in some way.




  • Tess Galati Posted February 20, 2018 6:24 am

    Carol, your light burns bright and lights whatever and whomever you face. It is a privilege to read you.

  • Maggie C Posted February 20, 2018 10:05 am

    Beautiful. Thank you!

  • Linda jo Chapman Posted March 31, 2018 3:35 am

    Wow. I really needed this today. You’re amazing at timing. Thank You

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