ALS Heroes: Nathan Graves
As a part of Major League Baseball’s inaugural celebration of Lou Gehrig Day on June 2, Marquee Sports Network is proud to work with Project Main Street and the Chicago Cubs to share the stories of ALS heroes. These heroes have taken on the illness with strength, hope and determination – eager to raise awareness and funds so that ALS can finally be defeated. For more information on Project Main St. and to make a donation to help these heroes and others being inflicted with the disease, please visit https://projectmainst.org/about-us/.
Nathan Graves would be considered the epitome of strength and toughness. Standing at 6’1” and 180 pounds, without an ounce of fat on him, his wife Tori describes him as the most physically fit person she has ever met.
A fifth-generation cattle rancher, Nathan grew up on a ranch in Wyoming and became an award-winning bareback horse rider in high school, college and in professional rodeo. And now he has a two-year old son, Noble, who is well on his way to becoming the sixth-generation cattle rancher in the family.
Nathan’s wife, Tori, describes a moment recently that spoke to Noble’s innate draw to horseback riding.
“His birthday was recently and my brother got him a basketball hoop. We get the basketball hoop all set up for Noble and he immediately knocks it down and starts riding it as a horse. So, I think he’s going to grow up to be a cowboy [like his father].”
Nathan says he sees himself in Noble and that he brings so much happiness out of everyone and that his purpose in life so far has been to spread joy.
The infectious joy of Noble came at the right time as shortly after his birth, Nathan was diagnosed with ALS in July of 2019. Through the first year of his life, Nathan was proudly able to care for Noble, while Tori commuted three hours every day for her work.
But as his disease has progressed, the family has taken solace in one silver lining from the Covid pandemic – Tori has been able to start working from home and relying on telemedicine for Nathan, cutting down on frequent trips to the doctor and allowing more time to spend at home with Noble.
“It’s incredible to watch him grow and develop, and just learn about life,” Tori and Nathan say about watching Noble grow up. “He’s learning right now all about ABC’s and 123’s, but he’s also learning a lot about the Wyoming culture. Everything he does is incredible.”
Noble has not been the only one who has been learning over the past two years however, as Nathan and Tori have committed their lives to learning as much about this disease as possible, including the 52 documented cases of symptom reversals.
“At the time of his diagnosis, they said he had two years to live, and that’s coming up this July. I’m 100% sure we’ve slowed it down and he won’t be dying in July. So why not do what we can to extend his life even more?”
These efforts include networking with others who are battling ALS, or those who have lost loved ones, learning about their experiences and what research they have heard.
“We know what the chances are of Nathan becoming a reversal, but that hope and remaining optimistic is so important and we have to keep that in order to keep moving forward,” said Tori.
“Hope is one part denial, and two parts effort,” Nathan added.
Nathan’s hope and approach to battling this disease has been an inspiration not just to his family and friends, but others throughout the community.
“The transformation from when Nathan was first diagnosed until now has been incredible in terms of his mental well-being. And you would think in a negative way, but it’s incredible how much more patient and grateful he is, and there are even people living without ALS who approach Nathan to learn more about how he is coping with challenges, because a challenge is a challenge no matter who you are and these are things that can be applied across the board as ways to stay positive and be an inspiration. We’re grateful for everything we have every day.”
One particular thing that Tori and Nathan are incredibly grateful for is the support of friends, family and the tight-knit Wyoming community.
“One thing that you are told in the beginning is that friends and family will kind of not be around and not know how to deal with it,” said Tori. “But that has not been the case for us. It seems that every relationship that Nathan fostered growing up, that they’re surrounding us and rallying us during this time.”
When Nathan’s childhood town of about 250 people threw a benefit for the family, the event welcomed over 800 people from all over the state, including the governor of Wyoming.
The support, and more specifically the fundraising, has been crucial to handling all of the costs that come with an ALS diagnosis. Included in the efforts was a grant from Project Main Street, allowing for key bathroom renovations, making their home more accessible and safe for Nathan.
“Our interaction with Project Main Street was super pleasant. It was really quick and easy, they got right back to us, and there were no strings attached. We had to widen the entryway and we replaced our tub with a roll-in shower, and then part of that is also getting a roll-in wheelchair and toilet fixtures. Without that money, that grant, it would have been so much more challenging to get that done. I have no idea how we’d be doing it otherwise. So for us, that grant was a huge lifesaver.”
Nathan and Tori are working endlessly to do what they can, including creating homemade charcoal soaps that absorb toxins, both to help Nathan’s well-being and selling them to raise money for additional funds to cover his treatment and care.
While Nathan has seen the disease tear at his physical body, causing rapid muscle loss, and losing the ability to do even the simplest things, Tori remarks that he will always be the strongest person she knows mentally and his hope for the future inspires her and others every day.
With the inaugural Lou Gehrig Day this Wednesday, the Graves family is grateful to Major League Baseball for shining a light on the often underfunded and underrecognized illness.
“It’s really exciting and I hope that it will be widespread and I hope they continue Lou Gehrig Day. It’s incredible to get that much outreach and I hope people will take the time to learn more about ALS and why fundraising is so important for this disease. The opportunities are limitless.”
While fundraising is crucial to the long-term efforts to cure the disease, for those living with the disease the most important thing they can do is count the blessings that come with each day. Nathan says that he would tell everyone to not take anything for granted.
“A year into our relationship Nathan got diagnosed with this terminal illness and I’m forever grateful for this journey and for finding Nathan,” said Tori. “Not a lot of people can say they found true love and we truly believe we found it. Every single day that we’re together is a blessing and I would be willing to take care of him every single day for the rest of my life if it meant being with each other.”