My husband adopts a take-control mindset in living with hemophilia
Gaining the determination to move forward despite illness and trauma
I recently picked up a fascinating book, “The Courage to Be Disliked,” by Ichiro Kishimi and Fumitake Koga. The book dives into the philosophy of Alfred Adler, a pioneering figure in individual psychology.
Adler’s ideas stand in contrast to the older, trauma-focused theories of Sigmund Freud. While Freud emphasized that our past traumas shape who we become, Adler believed that we aren’t bound by our past and instead have the power to create our own self-worth and meaning in the present. In the process, we can also change our lives.
Adler’s philosophy resonates deeply with my husband, Jared, who has severe hemophilia B and epilepsy. Despite numerous challenges during his childhood, including extended periods in the hospital, Jared refuses to let those experiences define his future. While many would expect him to be weighed down by the trauma of frequent hospitalizations and missed opportunities to live like other kids, he’s walking a different path instead.
Jared’s everyday mindset aligns with Adler’s belief that our futures are not predetermined by our pasts. Jared also believes that while trauma is complex, it’s possible to hope for better things as we move forward through life.
Maximizing capabilities and taking control of life
One of the most striking examples of Jared’s capacity-maximizing, take-control mindset is how he manages his hemophilia today. Even when he experiences debilitating bleeds, he refuses to let them keep him down. He told me that whether or not he has a bleed, there’s always a way to work around it so he can continue living in a way that brings him happiness, meaning, and fulfillment.
Jared values self-reliance and independence. Instead of staying in bed and allowing others to cater to him, he finds ways to continue fulfilling his daily responsibilities, be they work or household chores. Countless times, I’ve seen him navigate stairs with an injured leg or ankle while sitting on his behind. To some, this choice might seem painful or unnecessarily difficult. Some might even suggest that he refrain from leaving his bed until he’s fully healed. But Jared always chooses to spend what’s left of his energy doing whatever he can.
Jared believes that embracing life fully and seeking new experiences are what make life valuable. He refuses to let his disabilities define or limit him. He challenges societal expectations that suggest people with disabilities should be passive or dependent. While he listens to his body when it needs him to slow down, he takes full advantage of his good moments and eagerly tries new things. This attitude reflects his commitment to living life on his own terms.
Living life on his own terms
In one chapter of the book, the authors say, “If you’re not living your life for yourself, who’s going to live it for you?” This idea resonates with Jared’s drive to chase fulfillment and try new things, despite his limitations. Ultimately, he controls his life, his body, and his mindset. If he were to remain idle out of fear of the next bleed or seizure, he’d be allowing his limitations to dictate his reality.
Jared’s determination to live life on his own terms shows that our past experiences and conditions don’t have to define our future. They’re merely chapters in the story we write for ourselves. Moreover, the challenges of his illnesses often lead to amusing anecdotes. (Who’d forget about the time he spent two whole minutes tackling a flight of stairs — while on his butt the entire time?) Stories like these create great bonding moments and add to the richness of our lives.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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