Coping with an Insidious and Cruel Illness is Hard for a Miami Family
While it is true that my mother’s illness probably wouldn’t make the headlines as a case of, say, terminal cancer or Alzheimer’s disease surely would, the truth of the matter is that my small family unit in Miami has had to deal with it pretty much in the same way as though dealing with those illnesses. Everything in our lives – ranging from the trivial issue of how much I can use the Internet during daylight hours to the more serious issue of whether or not my mom’s internal bleeding can be stopped – has changed.
Sometime in the fall of 2005, way before Hurricanes Rita and Wilma were even tropical waves, my mom started losing her usual energy levels and often said she felt weak and tired way before the evening hours. She didn’t (and still doesn’t) feel any pain in her abdominal region, nor did the insidious bleeding show up when she went to the bathroom. We – I live with her – both thought that the exhaustion she felt was caused by the stress of Hurricane Katrina, which had passed over our neighborhood during its Category One passage through South Florida before taking its fateful trek to New Orleans last August.
Several weeks passed, however, and my mom’s activity level remained in its unusually low state because she felt tired; not even her early afternoon naps seemed to help, and she stopped inviting some of her close friends over because she couldn’t really enjoy the visits. She couldn’t, for example, take one of her best pals window-shopping at a nearby mall because Mom would get unexpectedly strong dizzy spells, and she feared experiencing one while she was behind the wheel in Miami’s wild and crazy traffic.
Finally, a few days into the post-Hurricane Wilma crisis, during a brief three-day period when my neighborhood had partial power restoration, the bad news came.
My mom had just gotten up from her afternoon nap when her cell phone – which she uses when I’m using the landline to be online – rang. At first she thought it was my older sister, Vicky, but it wasn’t. It was her primary care physician, Dr. Betancourt-Diaz, and he was very concerned.
“Mrs. Granados,” he said, “I just looked at the results of your last routine blood test, and I don’t like what I see. Your iron and hemoglobin levels are way below normal; you need to call 911 and get to a hospital right away for a transfusion.”
As it happened, because I had been on the Internet (thus tying up the landline), the doctor’s office had also called my sister – a registered nurse at Pan American Hospital – and she was on her way. My mom told me to call 911 – which I did – only to have me call back and cancel because my sister had arrived first.
To describe my mom’s ordeal that day and night would require an article of its own, but it was only the beginning of what has become a daily war of nerves. Three lives – my mom’s, my older sister’s, and mine – are now centered on a “cruel medical condition,” as my mom puts it.
My mom, of course, is the one most physically and psychologically affected. Her composure is, admirably, outwardly stoic and she still makes jokes and tries to think about other things besides her being sick. Yet she can’t make any plans beyond a certain timeframe of a few days in advance at most. She has already had to be hospitalized three times for immediate blood transfusions, and she has to endure weekly blood tests so the three doctors involved in her case can see the ever-so-vital hemoglobin and iron levels. Her arms are full of bruises at the spots where the lab assistants have to draw blood from, and her weekly schedule of iron injections, CAT scans; MRIs and visits to her PCP and the specialists grow and grow.
My sister, unfortunately, isn’t handling the crisis well. Of Mom’s two offspring, she is the oldest and most accomplished. She’s one of the few nurses in the United States with cerebral palsy, and unlike me she has lived on her own since she was 26. However, her personality clashes with that of my mother, and they often have emotional battles that result in their not speaking to each other for months at a time. She loves my mom, of course, but it’s a very possessive and suffocating variety of love, and the current crisis is making it more so.
As a result of Mom’s chronic illness, my sister has been suffering from stress. She gets overly anxious over any little thing anyone says, and she now wants to spend all of her spare time with Mom. Now, if Vicky were the kind of person that knew how to be calm and reassuring around a patient, my mom would be thrilled beyond words to have her around. Instead, my sister is like a coiled spring of nervous tension, getting hostile over any imagined slight and obsessing on the topic of doctors, exams, and whatnot.
Because I live with my mom and understand her a tad better, my behavior around her tends to be 180 degrees apart from my sister’s. Outwardly I’m cheerful – mostly – and try to have a positive outlook. I am more mindful of my mom’s needs and have tried to take on more and more of the household’s responsibilities even though I am not the best homemaker in the world. I spend more time with my mom; too, watching shows I don’t really care for (Judge Judy) just to be around her for a while. However, I don’t hover around constantly asking her if she feels dizzy or showing signs of the nervousness and fear that I feel inside.
Nervousness and fear, though, are what I feel deep inside. We all know our lives on Earth are finite and that death is inevitable, but even my awareness of this fact doesn’t make it easy. And although my attitude about mortality is more realistic than my sister’s (Vicky simply refuses to accept the possibility of losing Mom), I still dread the loss of my mom. Let’s face it, I have only been on my own, relatively speaking, a few times in my life and under very controlled situations (studying abroad in Spain for three months, being with my ex-girlfriend in another city for a few weeks at a time), and I know I will feel the loss keenly.
In the meantime, we three live with this new reality with a day-by-day attitude. We don’t make long-range plans anymoreâÂ?¦my sister and I haven’t even discussed our upcoming birthdays, which are five days apart in March, with each other as is our usual habit. Every week the list of Mom’s visits to the clinic gets longer and longer; the last printout of the schedule had so many pages that my mother jokingly calls it her Bible. So obsessed we are about the phone calls from my mom’s HMO and physicians that in order for me to be able to work online we are in the process of getting DSL to replace the dial-up Internet Service Provider I now use. Worse still, we know what my mom has, roughly, but the doctors don’t have a clue yet as how to treat it.
So that’s how our lives are with this insidious illness my mom is enduring. Each of us is trying to cope in his or her way, but it’s not easy. Every time the phone rings, my mom thinks it’s bad news, and we also have to deal with my sister’s bad reaction to the situation. And yet, we still hang on to hope.
For in the end, hope is all we have to keep from going insane.
