Diagnosis is usually the first time the word scleroderma is ever heard and being the word never before heard it brings no immediate meaning.
Then symptoms come as a flood of words never before heard, words big, words baffling. Associated diseases, a veritable feast of words never before heard, follow.
Questions never before asked take form in the wake of the words never before heard.
What will happen to my body?
Will it hurt?
What will I look like?
Will I die?
The failure of a quick death following exposure to the word never before heard naturally shifts the focus of the questions never before asked.
Will I become disabled?
Will my pain be controlled?
Will I be able to work?
Will I be able to pay bills?
We have the words, we have the questions but we have no definitive answers only a jumble of opinions, facts and emotionalism from which to fashion a way forward.
Then unexpected, new friendship, a gift that can compensate for much loss. Friendship with some never met, others now familiar, with searing honesty journeys are shared, benefits reaped, the virtual hug employed for those separated by distance.
Having all met with the word never before heard, having all asked the questions never before asked, with a determination never before known, we strive to succeed, to survive.