This sharepost is in memory of my brother, Paul, who passed away last week due to something called Sudden Unexplained Death in Epilepsy (SUDEP). At only 21 years old, he basically went into cardiac arrest during a seizure. This has been a sad and difficult time for me and my family, but we find comfort in knowing what a battle Paul faced every day, and that it was his body's choice to leave at this time. But last week wasn't all bad news... keep reading for the happy ending.
Ironically, just before Paul passed away I learned something about him that I decided I would share with you in my next blog. Paul usually had seizures every week or two, and this had been happening since he was 15 years old. During a seizure he was completely out of touch, just gone. But as he "came to" afterwards, he'd be very confused and scared, and experience periods of amnesia for up to a few hours following the seizure. Often he'd have seizures in the shower or after just getting out of the shower, so it wasn't uncommon for him to be naked. Amazingly, during the time that he as coming out of the seizure, however scared or confused he was, the first thing he always did was try to cover up his private parts. He couldn't always recognize who was around him - even family and friends - but the need for modesty was so deeply ingrained in him that it became of paramount importance.
We all place different levels of importance on modesty, but somewhere deep inside all of us it seems to exist to some degree. Whether it is a learned behavior from years and years of cultural indoctrination, or a more primal response, I don't know. But maintaining some level of modesty is obviously an important way for us to feel some sense of control over how others perceive us. I think the issue of modesty is at the very heart of what makes living with incontinence so difficult. Sure, there are logistical problems with incontinence, such as bringing products with you everywhere, and there are physical challenges like skin breakdown. But, hands-down, the questions I am asked most often have to do with modesty:
• "How and when do I tell my friends and family?"
• "How do I hide this from my co-workers?"
• "What can I do to avoid an accident in public?"
Because this modesty issue appears to be universally deeply-ingrained in all of us, I'm not sure that we can do too much to avoid it. But I do think that we can make a concerted effort to keep it all in perspective. Here is a new line of questions to consider:
• How would I behave differently if absorbent products (adult diapers) were thought of no differently than a sling on a broken arm?
• How bothersome would my incontinence be if I knew that there was absolutely no way that anyone would ever find out about it?
• In what ways would my life be different if everyone was incontinent?
And I can't forget that happy ending I promised... just four days after my brother passed away, I gave birth to my healthy and beautiful daughter, Juliet. Juliet is a blessing in and of herself, but the timing of her arrival, although bittersweet, is a special blessing for our family, particularly for my parents who've become grandparents for the first time!
Published On: October 31, 2008