Mother and Son team lean on love to navigate life change of a rare disease diagnosis
There’s is a love so deeply rooted in selflessness and admiration that you can easily feel it without needing to be in the room.
This is that special love built on the South Side of Chicago between mother and son, Pamela and Phazione McClurge, that even when a massive life change swoops in and completely changes the game the bond between the two becomes a source of hope and inspiration.
At times, the duo is more concerned with the other person than they are with themselves. They simply can’t help it.
Their journey the last five years has been frightening and difficult, laced with the uncertainty of what was wrong with Pamela medically while Phazione followed his dream to play Division I football and attended college at Cornell and Indiana State.
“Phazione knows I’m suffering and hurting. But he also knows I’m okay,” Pamela said. “There’s a lot wrong, but nothing is wrong. I struggle and that scares him. But I continue to motivate him, and he inspires me.”
“I don’t think you can get any more accurate than what she said right there,” Phazione said. “I’m not sure I’ve ever heard her say it exactly like that and we’ve never directly spoken about it in great detail that way, but it’s known for sure.”
After a nearly half-decade odyssey of accidents, injuries, surgeries, treatments and litany of visits to the doctor, a specialist at the University of Chicago was finally able to confidently diagnose Pamela with the rare disorder Stiff-person syndrome.
Stiff-person syndrome (SPS) is a rare acquired neurological disorder characterized by progressive muscle stiffness and repeated episodes of painful muscle spasms. Spasms may occur randomly or be triggered by a variety of different events including a sudden noise or light physical contact.
The severity of SPS varies from one person to another. SPS is a progressive disorder that causes difficulty walking and significantly impacts a person's ability to perform routine, daily tasks. Although the exact cause of SPS is unknown, it is believed to be an autoimmune that can have damaging psychological effects as well over time.
No parent ever wants to be a burden to their child. Watching your children mature and flourish on their own as a spectator on the sidelines of life is what makes every ounce of the blood, sweat and tears poured into them worth it.
At the same time, every good son wants to be there to protect and help his mom – especially if that mom is a single mom who served as an inspirational role model growing up.
Pamela’s diagnosis hasn’t changed much about that deep and selfless love the two openly share. At the same time, the reality of living day-to-day with a debilitating rare disease has changed certain aspects of their relationship dramatically.
“When they told me I had Stiff-person syndrome, at first I didn’t believe them. I had to actually really do my homework because I’ve had so many different diagnoses,” Pamela said. “I prayed about it, I didn’t cry about it, took the medication and did my research. I was actually eventually elated when they found out what was going on.”
Each and every day is now fraught with struggles that are both expected and unknown for Pamela. Her priorities and purpose remain steadfast and consistent in a world where the next 24 hours could be dramatically different than the previous 24 hours.
“My why has always been my children,” said Pamela, who worked in construction as a single mom to support Phazione and his younger sister while moving around to keep a roof over their heads on the South Side of Chicago. “I get up each day and even if I’m not doing well they are my why. I want them to still see me as this super person. And with this, I sometimes feel like I’m not and it’s been a struggle for me. I didn’t want to display that side of me, so I tried to minimize it.”
Processing and accepting her new reality as a rare disease patient while still trying to be the best mother possible has been a tricky road for Pamela to navigate. She’s slowly starting to come out of her shell in terms of not worrying about what others who knew her before might think and letting some of her friends and family know what’s going on.
“I remember her having several episodes, I don’t remember them in great detail, but I remember them happening. We didn’t talk much about it, though. I know it’s tough for her now, but she will get better,” Phazione said. “Regardless of what she is going through, I know she is always going to be okay. She’s that strong. I want to be with her, but she wants me to live my life. It’s a struggle. We just always want to make sure the other is okay.”
Pamela is a very positive person and each day brings new hope. It’s the only way she knows how to operate. She also knows living with SPS and mentally processing all she endures on a daily basis is a grind.
“I was hiding behind this for a good while. Now I want to advocate and let others know about what I’ve been through and maybe help them,” she said. “If I get my feet out of bed and put my feet back in bed, I’m thankful. I thank the Lord for that ability. When I’m feeling down I allow myself to wallow for a bit, but I do not stay there. I know that things will get better. Encouraging others, listening to and watching things … that motivates me.
“This is my normal for now. I’ve embraced my reality.”
Still, when the day gets long or starts out rough, she knows exactly where to go to find the strength she needs to keep fighting the good fight.
Phazione is only a phone call away.
“She motivates me, the way she attacks each day and tries her best to get the most out of it is inspirational. So, I try to do the same. Our relationship has always been good, but in so many ways this has brought us closer together and made us stronger because of it,” Phazione said. “We need to always be there for each other. Life can get tough. She made sure I always had everything I needed and then some. She always gives me her best, and I try to do the same thing and repay her by making something great out of my life.”
Pamela is working on a book to share her story and help others. Phazione wants to use his platform as an athlete to do his part to support the Rare Disease Community by working with Uplifting Athletes.
Together they are learning and growing to gain a better understanding and grasp of what their normal is today. By sharing their journey and story both as individuals and as a mother-son team is a way to possibly help others drives them.
“The hardest part for me is just not knowing enough. The reality is we don’t completely understand everything about what she has and how it’s completely affecting her body and all the risks associated with her extremely rare condition,” Phazione said. “The hardest thing is not having control. That’s true in life and this has heightened that for both of us.” But our message to everyone would be to never give in to life’s challenges, and keep your loved one’s close in the process!