Genetic Alliance, now 33 years old, has run Disease InfoSearch for more than 20 years. High-quality information, brought to you by the people who live with the diseases - 10,000 of them - for which we offer information. While lots of other sites offer information on most conditions, we believe those who live with these conditions should be the ones to curate this information. So too here, for Covid-19.
You will find hundreds of thousands of sites that offer COVID-19 information. We will do that here, too. While we will vet all of our sources for accuracy and currency, we will do four other things as well.
- Share resources from communities, including the leaders of support groups, who already struggle and suffer day-to-day because of the impact of disease.
- Provide resources for more than just your mind, which after all, is only one part of you.
- Provide a mechanism to hear about your experience – your signs and symptoms, your lived experience, your needs.
- Make sure researchers know that your data is here, protected, and ready to use.
Life as we knew it is over. Generally, we humans hate change. We hate impermanence. And now we have entered a period of great unknowing. All bets are off. Predictions are useful for planning, and planning might calm us, but we can only live this crisis one moment at a time. We are going to need a lot of support to do this. I am going to need a lot of support to do this. Part of how I support myself is to find ways to pause and breathe. Even for a moment. I invite you to do that right now. This “lost minute” will not hurt you, and it might help. Take a breath.
Can you bring that awareness of breath with you and let these words here support you? Thanks to a dear friend who shared this poem with me:
What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.
Promise this world your love–
for better or for worse,
in sickness and in health,
so long as we all shall live.
Promise this world your love. Look to those with whom you are sheltered in place. Look on the screen in your next webinar, or listen in your ear on your next call, and promise your world your love.
My love to you,
Visit Fight to End COVID to share your experience.