It’s quite difficult to focus on any sense of positivity when bleeds become more frequent. After a bleed-free streak that lasted over six months, it was easy to be disappointed when hemophilia made me feel vulnerable and weak again.
It’s not all that bad, though. At times, being bedridden results in a state of prolonged reflection. You can stare at the ceiling and blame hemophilia for your agony or you can think about how you might make up for the lost time and lost chances to carry out your responsibilities. Often, I simply think about the happy days ahead after everything is over.
On Aug. 1, my wife and I shared a special day: our first wedding anniversary. We had planned intensely and looked forward to spending our day in Tagaytay, a popular tourist destination in the Philippines. Fortunately, we have a house there and were able to save a load of cash on accommodations.
Anniversaries are supposed to be happy, romantic, and special occasions. Unfortunately, hemophilia had to kick me once more by giving me a severe bleed on my iliopsoas muscle. I’ve had this bleed in the past, and I’ll openly say that it is not something to brush away or joke about. It leaves me unable to walk for days, and may even develop into a pseudotumor, which can result in the amputation of a leg if left untreated.
Naturally, the trip was cut short, and I admit that I was gravely disappointed. I felt like I’d let my wife and family down. My wife tells me constantly that it’s OK. She always says that she has accepted and prepared for events like this. But the thing is, I am not OK with it.
On my downtime, I contemplated my attitude toward my chronic illnesses. It was our anniversary, after all, and I didn’t want to ruin it. I knew, however, that the more I felt the way I did, I would make things worse by being a lightning rod for negative energy.
My wife, Cza, might be telling me that she’s OK when these things happen to make me feel better. She says it with a comforting tone and a reassuring smile on her face. So, I thought, why deny her the privilege of making me happy? Wouldn’t the fact that I can still be happy regardless of any mental or physical pain I’m feeling make her feel better as well?
Over and over, people have told me that one of my worst qualities as a person is my tendency for self-pity. I’ve always been stubborn in this regard. As I grow as a dad, however, I have to lower my defenses and just admit that drowning myself in my own negative thoughts and dragging everyone else down in the process is a selfish, pathetic, sad recourse.
Life is too short to wallow in self-pity. It’s not worth ruining special events you share with loved ones because you’re facing some problem, regardless of how large or small it is. My bleed cut our anniversary celebration short, but I’m honestly quite content with how it all went. It still deepened the bond between my wife and daughter and me. It taught us how to be more responsible with my chronic illnesses and how to better take care of our mental health, which is so much more important.
Surely, more bleeding episodes will come in the future. They will always be painful, but each one can still be a beautiful learning experience. Currently, I can’t help or interact with my wife and daughter, and it saddens me a lot. But that makes me more motivated to do more for them once I get out of this bed, and to become the husband and father they both want me to be.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.