Interviews were conducted by Sickle Cell Warriors of Wisconsin.
Porscha Brukes
Mom, Warrior, SCD Champion
Porscha’s journey began in her youth, a time marred by the unpredictability of sickle cell complications. “I used to feel isolated by the fact that I’d miss school”, she recounts, her voice tinged with echoes of past struggles.
“The older I got, the more I continued to miss significant things”. Porscha has faced the cruel reality of her condition grappling with physical pain and the harsh limitations it imposed. But it wasn’t the physical toll that burdened her; it was the invisible barriers of living in constant pain that cut the deepest as she recounts, “no one told me I’d be in pain 90% of the time.
No one told me this, not a single doctor. No one really prepared me for what it would be living with sickle cell, especially as an adult. Having sickle cell as an adult is hell on earth”
Socialization as an adult living with sickle cell SS has proven to be challenging due to the chronic pain and fatigue which impact her disposition when scheduling social outings, “the fatigue alone robs you of experiences, for example, I have missed funerals and life celebrations because I was too tired to attend, not necessarily that I was in pain”, she shared with candidness.
Medically speaking, Porscha recounts the innumerable hospital stays, medications and disease managing therapeutics involved in her care. Particularly, Porscha describes in vivid detail how she had a dual chamber port for 10 years and aside from the fact that she was physically attached to this port, she also developed an emotional attachment to something that had been a constant in her life for so long. She had her dual chamber port removed for medical reasons and now is unsure of getting one again for fear of once again, feeling attachment to something that will eventually be taken away as she puts it, “I got used to life with a port, then a life without a port and now you want me to get used to it again? It is just a lot”.
And yet, there was another battle Porscha faced, one that tested her resolve in many ways she never imagined. Motherhood, with its boundless joys and profound responsibilities, brought forth a wave of conflicting emotions – love and fear, hope and doubt. As she navigated the uncharted waters of motherhood as a warrior, Porscha grappled with feelings of inadequacy, haunted by the specter of her chronic illness and inability to care for her child which she confessed, “my will to be with my son is what motivates me”. “Chronic illness and life struggles can get really deep, like a custody battle.
This is something that is not typically discussed but it needs to be”, she disclosed, with vulnerability in her eyes. For this reason, Porscha stresses the need for support groups at a local and state-wide level, especially for mothers living with sickle cell disease. “I think we are just now building a network with the rise of social media” Moreover, Porscha has faced the task of navigating romantic relationships, where the difficulty of finding a partner who truly understood the complexities of living with a chronic illness weighed heavily on her heart, often leading to misunderstandings and strained. relationships. “Feeling like a burden to your partner and the implications of reproduction are hard, as not everyone wants to have kids with someone who has a genetic disorder”.
Despite the adversity she faced, Porscha emerged not as a victim, but as a testament to the indomitable spirit of the human soul. Her journey serves as a reminder than even in the darkest nights, there exists the promise of dawn and the promise of hope.