No one knows why the coronavirus hit Ted O'Brien so hard. His wife, Sue, tested positive, too, but she recovered at home.
She said Ted has none of the underlying conditions associated with severe COVID-19 illness. He was in great shape and could run a 5K in less than 30 minutes.
That was before his coronavirus symptoms escalated and the former New York state senator, now the head of the state attorney general's Rochester office, was admitted to Rochester General Hospital in March.
"He doesn't have any memory of the first three weeks he was in the hospital, and that's good," Sue said. "He was at his sickest, but they were able to keep him ventilated, and so that's why he has survived, but nobody knew if it would keep going, so there was always that fear of today might be the last day that he's still surviving."
Sue has been posting detailed accounts on Facebook about Ted's battle with the disease.
She's heard from people who don't even know her or her husband, but they feel compelled to follow the updates.
She wants to educate people about the coronavirus.
"You know, I asked myself the question, 'Should I do this? Should I put our story out there, put his story out there, really, and is it the right thing to do?' " she said. "But I think it's so unknown and it hasn't touched everybody and some people feel like it won't ever touch them."
Family, friends, and the online community breathed a collective sigh of relief when they read this week that Ted is no longer in the ICU. He is slowly being weaned off a ventilator. Sometimes he's able to breathe on his own. His last two COVID-19 tests were negative.
"And we're still not sure he's completely out of the woods," Sue said, "but he's much more stable now."
One thing has not changed in the 42 days that Ted O'Brien has been hospitalized: His family can't be by his side to comfort him. Not Sue. Not the couple's 15- and 16-year-old daughters. No visitors.
"This virus has stopped us from being a partnership because I can't go to the hospital, even though we're about five miles away, you know?" Sue said. "And I can't hold his hand, now that he's awake, even, and let him be frustrated and let him vent, or just be there quietly together."
Sue said she understands why hospitals can't allow visitors in the midst of a global pandemic. But she's frustrated.
"I have basically begged to let me come into the hospital and it's a hard 'no,' and it's a 'no' everywhere," she said. "I don't want special treatment, but he's been in the hospital for 40 days all alone. All alone. It's cruel."
The hospital found another way for the family to stay connected. Dr. Adam Herman, a hospice and palliative care specialist, used his own phone to set up a video conference.
"He brought us to the bedside," Sue said. "He did that five times for us during those days, those first couple weeks when we didn't know what would happen."
At that time, Ted was heavily sedated. Now, he can see Sue and his girls on the phone and say a few words.
Knowing how precious that connection is, the O'Brien family has started a Patient/Family Connection Fund to collect online donations.
The money will ensure that the palliative care team at Rochester General Hospital can help other patients stay in touch with their families during the pandemic, when visitor restrictions make it impossible to be at their bedsides.
Sue imagines the day she can finally be in the same room with Ted.
"I fully expect me to just completely break down," she said. "He'll hate it, but I'll just completely break down. He'll want me to stop crying, but I won't be able to."
As a COVID-19 survivor who has watched her husband endure his own harrowing battle with the disease, Sue wants people who are getting tired of social distancing and the other restrictions on daily life to persevere, just like her husband has.
"No one knows how COVID will affect you as an individual. It might be mild, it might land you in the hospital, it might be the reason you leave this Earth," she said. "This is a complicated and unknown disease that doctors have very few tools to use to help people survive and it's just not worth the risk to take your mask off or party with your friends."
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