I received a call from my mom sometime last week - and I could hear it in her voice. She was definitely very upset. I didn't need to ask why. I already knew what was up. Interstitial Cystitis (IC) - a disease that most people still haven't heard of despite it's impacting an approximate 3 - 8 million women and 1 - 4 million men in the United States alone, has plagued my mother with debilitating chronic pain for as long as I can remember.
She was diagnosed when I was still a very young girl and was hospitalized at one point, during which she underwent a full hysterectomy, which produced a series of complications that led to a much longer hospital stay than anyone in my family anticipated.
To this day she reminds me of the conversation I had with her doctor during one of our hospital visits:
"When is my mom coming home?"
"Very soon."
"You say that every time we're here and then she doesn't come home. You're lying."
Needless to say, it made the doctor feel terrible, but there really wasn't anything he could do. She had lost her cerebrospinal fluid and needed to recover from that on top of the hysterectomy.
Despite a massive operation, it barely made a dent in what would ultimately become the bane of my mother's existence. Interstitial Cystitis would change her life dramatically - impacting her ability to do things many of us take for granted, like walk long distances, exercise and attend events, (including those she considered important throughout my childhood). It would impact her mood, her overall outlook on life - and her will to live, (though I wasn't really aware of this until very recently).
My mother has fought a disease that has subjected her to chronic pain now for more than three decades. We're not talking about mild pain either. We're talking about stabbing and burning to such an extent that she literally cannot do much of anything on days where her flare ups are really bad. There is no cure. There are treatments, though most are incredibly unpleasant, including one she has undergone herself countless times, wherein they instill your bladder with an acid-like substances to try to burn off the ulcerated lining). Fortunately for her, the treatments have more or less worked over the years. (She only resorts to them when the pain becomes just too unbearable). Unfortunately for her, one of the more recent treatments hasn't really delivered the same results - and she has been horribly depressed, having to undergo a second round of bladder instillations which also have yet to produce the results she's looking for - even after 6 weeks of them.
So when I got this call the other morning, and for the first time in my life I heard her admit that she has thought about taking her own life - it broke me. I was horrified and stunned. I know how upset she has been over the years for even having this illness. I know she is riddled with guilt over it, (which is absurd because she had nothing to do with it). Nevertheless, she STILL feels guilty about missing those supposed "important" childhood events of mine. I can't recall her missing anything. She was at every dance recital, every play, every everything I can think of. She says she missed things like Open Houses. Who the hell cares??? Well, apparently, she does. She wanted to be at those. Frankly however, I have no recollection of her missing them, but I feel terribly that she still beats herself up over what seem to be to be very trivial things. But she's a mom... and moms want what's best for their children - and that would've meant her not missing a single thing - ever, no matter how trivial.
In any case, her admission of thinking about taking her own life gave me serious pause. As those of you who know me may already know, I am petrified of death so I cannot even begin to imagine a scenario in which that thought would cross my own mind - but then again, I have never, ever experienced chronic pain. (Knock on wood).
She has... and she has for well over 30 years - and as she explained, she is, "...tired of the fight."
As anyone can understand, this is not something you want to hear your mother say - especially when you're about to become a mother yourself. Thing is, she's really been struggling for a while now - and she needed to get it off her chest - and I'm the one she talks to about these things. I think she actually tried to hide it for quite a while, because I'm pregnant and emotional and dealing with a lot myself... but I'm glad she said something - because it forced me to take a look at things... like how someone could even think that - and what I might be able to do to help her... because that's what I love to do best. I love to help people. I have read about her disease time and time again - Googling everything and anything to see if there are new treatments available she might not be aware of because she refuses to read about her disease. (It depresses her, freaks her out, etc.) She also still doesn't know how to operate a computer, so there's that. I have actually found a few things for her on occasion - and she is always eternally grateful, so when I got this most recent call, I was on a mission to conduct more research - find something she hasn't tried yet - something that would give her hope and eliminate any thoughts of wanting to cease her earthly existence. After all, Gypsy needs her grandmother and really, I still need my mom.
Fortunately, my mom called me again later to reassure me that while she may have thought about it in a very, very dark and desperate moment, she would never ever go through with it. She will keep fighting.
THANK FUCKING CHRIST.
Obviously, that's a very good thing - but I hate that she has ever experienced so much pain to begin with that she even gave it a moment of thought. Also, my mother is one of the strongest people I know, so for her to feel like quitting really speaks volumes about just how horrible IC is. (Apparently depression and suicidal thoughts are very common in people with IC. Sadly, some people actually go though with the suicide part). In good news, now that I'm gigantic, (see pic) and having a harder time being mobile, I have plenty of time to read and research the latest treatments for her illness. Interestingly, but perhaps not surprisingly, Botox is on the list.
Anyway - this is partially why I haven't written much recently. I've had a lot on my mind.
P.S. - If anyone reading this knows my mother, please do not even mention this to her. She's incredibly weird about people even knowing that she has this disease and she'd probably kill me for writing this. Good thing she doesn't know how to use a computer.
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