Purple Canaries

Joyce Gould with Jill Gould

WELCOME TO 2021 and Purple Canary’s ONGOING JOURNEY: SEEKING CLARITY AMONG THE CHAOS OF THE ACUTE PORPHYRIAS

The following was submitted by mother, caregiver and a fervent warrior, Laura Riddle, President of the non-profit US Porphyria Alliance, “No One Left Behind” (reprinted with permission):

“WHEN” (An homage to “If” by Rudyard Kipling)

When you keep your head about you though the doctors and nurses are losing theirs by saying “it’s all in your head;” yet make allowance for their doubting.

When you wait and fight to get help to survive the waiting.

When you (or I) are lied about–but we won’t deal in LIES.

When you are hated (by those who should be helping you) but try not to hate in return but be humble because there are times we aren’t good–or try not to sound like a Phd even though you do know more about what is happening with YOU than doctors and nurses.

When you have to dream because it’s so bad but not make dreams your master.

When you have to think to save your life, but not just for lofty aim.

When you meet with Triumph and Disaster and weather both the same.

When you will hear the Truth you’ve spoken twisted by knaves to make a trap for fools.

When you watch the things you gave your life to broken–and you pick them up and try to fix them even though you are seriously unwell.

When you will have to gamble your very life again with new doctors and a stripped diagnosis, and lose—then start all over again

When you have to keep silent about things.

When you can force your heart and nerves and body to keep working when you are truly sick and hang onto them when you think you’re dying and you have no strength left, except the Will that says to “Hang on.”

When you will talk with crowds and keep your humility.

Or walk with (new) experts and never forget the patients.

When enemies and friends can’t hurt you

When all people matter to you but none more important than the other.

When you can fill the unforgiving minute with a run because you got treatment are getting better.

The future is yours my darling daughter, and all Gods blessings, because you have already won.

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