HAMMOND, Wis. — Newlyweds Eric and Kathy (Hague) Marx said they’re taking things day by day.
That’s not easy for Eric Marx, 49, who is known for being a planner, the couple said. But there are just too many unknowns, like how much longer he’ll be able to speak without help from a computer.
The former Ramsey County, Minn., correctional officer, father of two and now stepfather of two was diagnosed in September 2018 with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease. The neurodegenerative disease has left him housebound and in a scooter.
Despite the uncertainty in their lives, there was at least one thing the couple said they were sure about: getting hitched.
���We were both happy just living together,” Kathy Marx said of their relationship before the diagnosis. The divorcees met in 2016 on a dating website.
As the disease progressed, Kathy Marx said they decided marriage was the right thing to do.
Disease be damned, they did it right.
Dozens of family members and friends packed into the couple’s house Feb. 15 for a wedding ceremony and reception. He’s the youngest of four siblings and she’s the youngest of nine, so that meant a big turnout.
“For something that was supposed to be small, it doubled in size pretty quickly,” Eric Marx said. “It was quite awesome.”
On the menu was chicken, mashed potatoes and potato salad catered by Parkside Restaurant & Bar in Hammond. The cakes were homemade by Denise Hague and Corrie Ellefson. And the officiate was the Rev. Florence Conover, a former coworker of Eric Marx at Ramsey County.
The two also got an assist on their big day courtesy of St. Croix Hospice, which has been providing care since January. Hospice aides helped the groom with shaving and getting dressed so the bride could step away and get ready.
“I don't know where we’d be without them,” Eric Marx said of the St. Croix Hospice workers.
When St. Croix Hospice clinical services manager Bethany Smith heard about the wedding plans, she said she was thrilled to lend a helping hand.
“I called Eric’s nurse, my coworker Christina, to let her know we scheduled an extra visit for the day of the wedding to assist Eric, so Kathy could get her hair done,” Smith wrote in an email. “During that phone call I was able to say congratulations to Eric and Kathy via speaker phone. I was so moved by the happiness I heard in their voices.”
‘We just clicked’
The couple's online dating connection was quick, starting with games of 20 questions before Eric and Kathy Marx took the next step — literally — to go on a walk for their first in-person meeting.
“We just clicked and went forward from there,” Eric Marx said.
But their budding relationship hit a roadblock in 2018 when Eric Marx sustained an injury on the job that never healed properly.
Tests were run, but the cause eluded doctors. With other conditions ruled out, the diagnosis landed on ALS.
Onset and progression of the disease varies from person to person, but can begin with muscle weakness, slurring of words and uncontrollable laughing or crying, according to the ALS Association. Over time the disease shuts down nerve cells in the brain and spinal cord. Eventually breathing muscles are affected, requiring a breathing tube.
Eric Marx said his lung capacity was at 78% in June 2019. By December it dropped to 31%.
The disease has taken a financial toll, as well. The couple converted their house to be handicap accessible — thanks in large part to help from friends.
Friends and the community also have been helping out with benefit events and a GoFundMe donation campaign.
‘I’m very lucky’
The disease forces the couple to sleep in separate beds and precludes snuggling on the couch to watch TV, but Eric and Kathy Marx said they find a moment before falling asleep to share an embrace.
Being a caregiver also means there are no boundaries between them, Kathy Marx said.
“I ask her all the time, why do you still love me? And she says, ‘Well, because,’ Eric Marx said. “I’m very lucky.”
Though they said it’s difficult to look too far ahead, Eric Marx lived up to his reputation as a planner by already arranging his funeral and obituary.
“So she wouldn’t have to worry about it,” he said.