Invisible Illness

I was taken aback to see my POTS peeps posts about Invisible Illness Week.  Had it been a full year since I wrote my last notes about when internal experience does not match external appearance?

Indeed it seems unfathomable that it has been three years since I had to leave my career.  Even my youngest child is in high-school this Fall.  Impossible!  I think to myself.  But the truth is, time does pass … even when it does not heal.  And that is perhaps the hardest part for me of living with a life limiting illness.  The sun continues to rise each day, the seasons seem to blur one into the other.  But that spark of hope that many of us in our youth had cling to that one day we would be restored to a vitality that we can now barely even remember is but a dim and distant star in a galaxy light-years now removed from our night sky.

And while I do believe that anything is possible, the reality for me is that in practical terms this is what my life is about, for now and likely the long haul.  There is no waiting to recover but rather grasping opportunities when windows open for even glimpses of time that I may go play lightly in the world of the walking.  A special trip to the card shop to pick up a gift for my husband and daughter.  A difficult ride out to get frozen yogurt with my family.  A wheel around the block with my kids laughing as they pretend to let my chair roll down a steep hill in the dark of night.

I do wish there was more than just the simple BBQ in the backyard to celebrate our summer together.  But I realize deeply that what we do have by way of love and laughter — not to mention an occasional soul train line in the kitchen after the dinner dishes have been washed — is in itself a priceless gift and a family memory that will forever remain in all of our hearts.

So on invisible illness week, I would like to embrace the notion of having it all.  Which for me, allows time to reflect on the sadness of a life and dreams that are lost but also to remember that pain and suffering are not a two-for-one deal and that happiness can be found in the stillness of a single breath.