Patient stories

Morgan Grindstaff: Southern CF Living

Morgan Grindstaff is the non-traditional yet traditional cystic fibrosis individual. Born and raised in North Carolina, his small-town living and CF shaped his whole being. The main figurehead of his success he attributes to his incredible mother whose free-flowing, flexible environment guided him to who he has become.

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Starting at two months old, he was diagnosed with cystic fibrosis. He was unable to keep down food, had stinky diapers and his mother’s intuition led to the diagnosis. He was redirected from the local hospital to Duke for a sweat test and his mother was told that he would not live past his third birthday. Growing up 40 minutes outside of Charlotte, educational opportunities were slim, and his health was the priority. His mother thought it best that he be homeschooled.

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Along with being his mom, she was his biggest advocate, caregiver, nurse and teacher. Morgan noted that she made sure to never lie to him or coddle him. She remained very honest to Morgan about the severity of his disease and ensured that he did his treatments diligently. She, also, partook in the concept of “unschooling”. This was a different approach to homeschooling which was perceived as novel back in the day. Rather than forcing subjects that did not pique Morgan’s interest, his mother allowed him to learn what truly interested him. His was interested in music, art and the creative realm versus science. This stemmed from her feeling terrified that he was not going to live very long, therefore, she let him live how he wanted.

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His mother even insisted that he do his treatments even if he was around friends to be sure that never felt ashamed of his disease. This led Morgan to recount a comical moment when he and fellow CF advocate, Tommy Danger, were camping in Florida and were only able to find one outlet for him to use his portable vest which was by the pool where children were swimming. Kids kept coming up to him asking what he was doing, and they told them that he was an astronaut in training!

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For Morgan, CF has been an adventure. He does not see doing his treatments as an obligation or as a burden. His body is on autopilot once he wakes up. He will mindlessly grab has rolling cart to his bed, and just do it. Most of his CF belongings are portable, so he has a great amount of versatility. Growing up, his CF was mild until his mid-teens but then dropped as he aged. When he moved to the dryer climate of San Diego for a little, his lung function was at 91%. Morgan found that moving back to North Carolina dropped his percentage all the way down to the 40s because the humidity and rain did a nasty number to his lungs. The humid climate does not bode well for his lung function. He mentioned that just five to ten years ago, people knew very little about CF and thought it was similar to asthma. He is grateful for the awareness that has developed because of films like “Five Feet Apart”.

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Currently, Morgan’s full-time gig is as a Youtuber. He was in marketing for years, even working for the More Than Just Me Foundation. While youtubing and gaming does pay, it does not pay a lot and likely will return to the marketing field for that consistency. He describes himself as outspoken to the point of being brutally honest which is a blessing and a curse. He enjoys trying everything but loves graphic design, writing, spoken word, the outdoors and outdoor concerts. At the spritely age of 29, Morgan has managed to find an equilibrium of connecting people to his truth while maintaining an arm’s length distance.

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When he worked at MTJMe, he was very involved in the CF community directly whether it was talking to people and making friends. While the CF community is aware of the six feet apart rule, the desire for human connection tends to override that guideline. “It’s the life in your years instead of the years in your life… the connection means more than spreading a bug.” Morgan explained that being in that community meant that your brain automatically registered that you may lose the person standing right in front of you. He recounted having photos from the MTJMe 5k runs and being able to cross off people who have passed, noticing that more were gone than are alive. He acquired a great deal of survivor’s guilt and it truly affected his whole being. This went on until the final straw that broke the camel’s back. He experienced a great loss of his friend, Erin, who was also involved in MTJMe. Morgan sunk into a depression and realized he could not keep going through those same motions. For a while, he completely withdrew from the CF community until he started back up with his online presence.

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YouTube provides Morgan a safety net. It has been a way for him to reconnect with a community that truly can only relate to how he feels, yet there is a wall that emotionally protects him from making a full connection. It has been a safe-haven for him and others. Morgan mentioned that he discusses on his channel how you need not sacrifice your life for an unwanted disease, and it has touched many. He regularly receives much praise via email and other messaging streams. There was one person who sent him a spoken word piece about mental illness and suicide, but then discovered Morgan’s YouTube channel and it gave him the push to get help. That type of influence is the accomplishment of a lifetime and Morgan wants to continue to support others in this way. Long-term, Morgan would like to work to save enough money to make a home on wheels, travel around the country and blog about his adventures. Going out of his comfort zone is his comfort zone and he prefers to not be stationary. Like many others, he sees the future of CF as being very bright. He mentioned a few of his friends who have been in life-changing clinical trials and loves seeing the transformation. He does not think it will ever be cured, but accessibility to treatments and options is currently endless.

Instagram: @cystik1

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