REGIONAL- You’ve either made “the call” yourself or likely know someone who has. That early morning call to your workplace, claiming you’re too sick to come in that day, even though there have been times you’ve dragged yourself in feeling much, much worse.
If there’s anyone who could legitimately make that call these days, it would be state Sen. David Tomassoni, of Chisholm. Diagnosed with amyotrophic lateral sclerosis, ALS, last summer, the neuromuscular disease has been predictably relentless in its attack on Tomassoni’s ability to perform even the simplest of tasks.
When the Timberjay caught up with Tomassoni by phone last week, he described how things have changed with his physical abilities in the months since his diagnosis.
“As we went through the summer, I was able to use my computer, I could still type, and I could still drive,” Tomassoni said. “I could feed myself and dress myself. Little by little, as time went on, I began to lose the use of my arms and my hands, and eventually I had to live with my sister so I could have caregiver support.”
“That was last November,” said his sister Mary Jo Newbauer, also of Chisholm, who was present with Tomassoni to help facilitate the interview. “He could talk way better and walk way better when he moved in with me.”
In late February, after the start of the legislative session, Tomassoni moved again, this time to a room in a care facility in Duluth that could better accommodate his greatly increased need for assistance to perform physical tasks he once did without a thought, that are now beyond him.
“I can’t pick up the phone to even answer a call or respond to a text,” Tomassoni said.
In his current state, anyone would give Tomassoni the grace to make “the call” now and then and take a day off from his legislative duties.
Anyone except, of course, David Tomassoni. That’s just not how he’s wired. He made a promise to his constituents in Senate District 6 in Itasca and St. Louis counties that he would continue to be a strong voice for them in the Legislature, and that’s exactly what he’s doing. It’s not business as normal, but it’s business as usual this term for Sen. Tomassoni, with help from his family and friends, colleagues, legislative staff, and innovative technologies.
The work goes on
The day that the Timberjay connected with him, Tomassoni had already put in a full day fulfilling his legislative duties.
“We had a general session, and we had a higher education committee meeting,” Newbauer said. “We write emails, we respond to emails, and we respond to text messages, and that’s kind of an all-day thing. And now we’re having an interview.”
Tomassoni chairs the Senate’s Higher Education Finance and Policy Committee, and while he’s turned to St. Paul Republican and vice-chair Jason Rarick to facilitate the committee’s in-person meetings, Tomassoni is still firmly in charge.
“I’m having the vice-chair run the meetings, but I’m hands-on in directing the committee,” he said.
He also serves on committees for mining and forestry policy and environment and natural resources finance.
Tomassoni’s most visible piece of legislation this session has been his bill to provide $20 million for ALS research and an additional $5 million for caregiver support, a bill that was passed unanimously in the Senate on March 10 and is currently under consideration in the House. But Tomassoni is the chief author of more than 40 bills this session at various levels of consideration. While some are statewide in focus, like a relief grant program to aid businesses still suffering from the effects of the COVID pandemic that was introduced just this week, a great number of those bills are for capital improvement projects in his own district. He hopes they will be incorporated in the major bonding bill expected to be enacted toward the end of the session.
How he does it
One big assist for Tomassoni in maintaining his active role in the Senate from afar came from an unlikely source, the coronavirus pandemic. Forced to do its work from a distance for a time, the Senate installed all the necessary technology for members to meet virtually in both committees and general sessions.
“If it hadn’t been for COVID I might not be able to do what I’m doing,” Tomassoni said. “Because we put in the Zoom system that allowed us to work remotely, it’s turned out that I’m using everything every day.”
Attending meetings virtually is one thing, but actively participating is another. While Tomassoni’s ability to speak has declined to a point where it’s often necessary to have someone like Newbauer translate for people unfamiliar with his speech patterns, he’s not wholly dependent on others to speak for him. For speaking up in committee, in floor debates, or for conversations with colleagues and others, Tomassoni has an augmentative communication device so that he can talk for himself.
Like many others in the state suffering from ALS, Tomassoni obtained the device through the ALS Association Minnesota/North Dakota/South Dakota chapter. Vice-president of care services Marianne Keuhn described how the computer-based system works.
“These devices are just incredible,” Keuhn said. “You literally use your eyes, and a camera picks up the movement of your eyes and helps you to focus on letters or words or phrases that you want the device to speak for you. It can predict the words you’re trying to type out, and there are ways you can use commonly-used words and phrases. We provide all the equipment, and there’s never a charge to anybody who’s diagnosed with ALS for any of our equipment.”
Given that the device Tomassoni has costs in the neighborhood of $30,000, being able to get it on loan for free from the association is a huge help, Keuhn said. The ALS Association has an extensive inventory of communications devices to meet the various and changing needs of patients over time, and also has a wide array of other assistive devices they loan out to help with every aspect of functioning affected by ALS.
“When people are diagnosed it’s an average of $250,000 they would have to pay out of pocket if they were to have to get all this equipment on their own,” she said.
Insurance may cover some of the costs but getting a piece of equipment approved may take weeks or months, and by the time an insurance company gives its OK, that equipment could end up being unusable because of a patient’s advancing condition, Keuhn said. Having equipment ready to loan helps the ALS Association to address patient needs as they arise.
Right now, the device uses a standard computer-generated voice to speak what Tomassoni inputs, but the sound coming from the device could soon sound a bit more familiar.
“People have the opportunity to do voice banking, where you read around 200 to 300 sentences and it creates a computer-generated version of your own voice,” Keuhn said. “It sounds very similar to your own voice, so when you use your eyes to spell out a phrase like ‘I love you’ it will speak it to whoever you want in your own voice. It’s not perfect, but it’s pretty close.”
However, Newbauer explained that there’s one adaptation for Tomassoni that the device just can’t master.
“He said that he wants you to know that he can’t speak very well because he’s Italian, and Italians have to use their hands when they talk and he can’t use his hands,” she said, with Tomassoni audibly chuckling in the background. That prompted a question about how Tomassoni is adapting the pace and tone of his well-known humor for delivery by computer.
“You always have to be careful what you put down,” he joked.
A little help from his friends
Tomassoni’s long-standing positive attitude and gregarious demeanor has most people he works with calling him not only a colleague but a friend, and that begins with his legislative assistant of 22 years, Laura Bakk, wife of another close personal friend, Sen. Tom Bakk, of Cook.
However, Tomassoni was quick to put his relationship with Laura Bakk in the proper perspective.
“Now you’re talking about MY boss,” he said. “People don’t know this, but Laura has been with me longer than she’s been with Tom. She’s a wonderful assistant, marvelously efficient, and sometimes gets things done before I even want them to be done. I have to say that we get along really well, and she’s the kind of person I would do anything for.”
Bakk said that her work really hasn’t changed much at all this session. She still communicates with Tomassoni multiple times a day, and she continues to handle the same office duties as always, including responding to inquiries and comments from constituents and passing those along to Tomassoni.
“He doesn’t always get back to me right away, but I know he will, and he does,” Bakk said. “So, I just do my usual job and I don’t run everything by him. I never have. It’s just been working like it usually has. At the beginning of the session, we just had to get used to navigating who was going to be with him today, who was going to be with him tomorrow and the next day.”
As is Tomassoni, Bakk is retiring at the end of the legislative session, and the biggest adjustment she’s had to make is not having him in the office every day.
“Because of his disposition, he’s always delightful to have in the office, and this being my last session, it’s bittersweet because he’s not here,” she said.
His colleague/friends have also stepped in to help move Tomassoni’s legislative agenda forward, particularly Tom Bakk, with whom Tomassoni formed an independent caucus of two last year. While Tomassoni gave a brief statement when his ALS research bill was introduced in committee, it was Bakk who gave the lengthy detailed introduction to advocate for the bill, and he did so again when the bill was taken up by the full Senate. It’s not the only time Bakk has stepped up to help in that way. Unsurprisingly, Bakk is also a co-author of many of Tomassoni’s bills. Other colleagues in both the Senate and the House have pitched in in similar ways.
It’s no surprise to Laura Bakk that Tomassoni hasn’t skipped a beat in service to his constituents.
“When he got the diagnosis back in June and he told my husband, Tom told him to ‘tell Laura’ and he said, ‘I can’t,’” Bakk said. “So, my husband told me that night, and I said, ‘You know what, if anybody can handle this horrible disease it’s David. I knew he would have a positive outlook and deal with it the best he could, and he’s proven that.”
And throughout it all, there’s been family. Although Tomassoni has moved to Duluth, Newbauer continues to visit frequently and remains in the rotation of helpers. Tomassoni’s sons, Dante and Dan, have been particularly visible, assisting their father to attend the opening day of the legislative session and other functions. Along with other extended family thet provide ongoing support both practical and emotional to help him keep on being the same committed legislator he’s been since he was first elected to the House in 1992.
“It’s amazing,” his sister said. “He’s always been just the same guy that he is now. But to watch him and how he has handled all of this, with such dignity and grace, and he never complains. He’s just so strong. I love him.”
And Tomassoni expressed his deep gratefulness to all who have pitched in to help with his own characteristic dose of optimism.
“There’s been an overwhelming outpouring of love and support,” he said. “I couldn’t be happier with all the people who have reached out and offered us a helping hand. It just makes me so happy now that there is so much good in the world, when we see all that’s happening out there. I have my own physical challenges, and we’re just going to take it a day at a time.”
Those interested in learning more about the assistance available through the ALS Association Minnesota/North Dakota/South Dakota chapter can contact the organization by calling 888-672-0484, or by emailing at info@alsmn.org.