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The irony that Stroke Awareness Month takes place during the same month as Mother's Day is not lost on me.
For the past 10 years, the words "stroke" and "mother" have become intertwined. Both have played a substantial role in shaping the adult I have become. Coming to terms with my relationship with both is an ongoing struggle. This is not a Stroke Awareness Month essay to bring awareness to the importance of healthy habits and early detection to lower stroke risk. Nor is this an inspirational essay about life after stroke and the lessons it taught has my family. What I write is about the reality of being a 25-year-old daughter of a multiple stroke victim, and how the it can make the future a bit terrifying.
Unpredictable. That sums up what I have learned from the decade long experience of being the daughter of a multiple stroke and heart attack survivor. The other day, the news segment on the car radio reminded me that May is National Stroke Awareness Month. Ironically, it was the moment I pulling into the driveway of my childhood home for my weekly visit. The place where my family and I were unwillingly indoctrinated into the world of stroke in 2004 when I was 15 years old. In this household, every month is Stroke Awareness Month.
Early on there were days and even weeks where I would often forget my mother's stroke had left her with brain damage, when minor impaired memory loss and slight coordination loss were the only identifiers that often went undetected to others. But after two major heart attacks, a quadruple bypass, a stent, seven major strokes and countless TIAs (mini strokes), ignorant bliss is a memory. The aftermath of each stroke is visible in my mother's every step -- literally. When she attempts to rise from the sofa and her body tumbles back taking at least two tries to successfully stand up.
As her body sways, her unsteady legs trembling below her. The slight droop of her right side that is more prominent when she is overtired. Depending on the day, a walk to the bathroom or down the hall could appear as if she was navigating through a funhouse at an amusement park instead of her home of 33 years. Her arms go out in front of her in case her body decides to shift to one side or another. The family dog trots behind her but knows to be ready to dash in case mom takes a tumble (the poor dog as been the causality of several of my mother's falls). As she zig zags across the hallway, I hold her breath watching helplessly while her body often time collides with the wall. To a naive onlooker, my mother would appear to have had too many drinks. But she hasn't been intoxicated since 2001.
Black and blue marks cover my mother's body that makes her appear as if she's a battered woman (which could not be farther from the truth) because of an unfortunate combination of blood thinners and lack of balance. At the moment, the current bruising is from a nasty fall that led to a chipped humerus in her right arm. Much to my chagrin, she refuses to use the cane I ordered or her a few months ago when it became apparent to all of us her balance was becoming a bigger issue. At 25, it never dawned on me that I would be online shopping for these items for my 55-year-old mother.
After her most recent fall, my father finally broke down and bought a walker for her to use. The same red walker with wheels and a seat that we bought my grandparents who are in their late 70s. We also made the decision to finally get safety bars installed into the showers to prevent injuries in the future. The same shower that my mother used to give me bubble baths in and where she taught me to shave my legs not so long ago. Yes, this is a part of life and a natural progression that happens when parents get older. Yet mom and I seem too young to be entering this phase in our relationship. But again, I felt that way at age 17 when I found myself dealing with neurologists in the emergency room because she couldn't advocate for herself during the midst of having a stroke. Or at age 14 when I tied her shoes telling her it was going to be alright as my dad was starting the car to take her to the emergency room because we feared she was having a heart attack (she was).
Over past few months, it has become harder to understand my mother verbally when she is having a "bad" day. Early on when we first entered the world of being a stroke family, the only time it was difficult to decipher speech was when she was overtired. But more often than not recently, I am finding myself asking her repeat what she had said, while her eyes flash with embarrassment and annoyance. I hate to admit it, but there are sometimes where I don't have the heart to ask her to repeat herself for a third time, so I just nod in agreement and try to change the subject.
My mother was the person who instilled the love of reading into me, indulging my passion by letting me purchase as many books as I wanted whenever we went to a used bookshop or flea market. She would make blank writing books for me our of construction paper and looseleaf paper so I could "publish" my own books. Now, my mother's massive book collection of murder mysteries and crime thrillers sit on a bookshelf collecting dust. The woman who could breeze through a 200-page book in a few hours now has difficulty getting through a chapter. Her Catholic school immaculate penmanship has been replaced with shaky printing that is often time impossible to decipher.
The damage to her brain have left her long and short-term memories severely compromised. Often times when visiting, my mother is engrossed in a television show or movie she swore she had never seen before, although I was there with her the first time she watched it. Instead of pointing it out, I indulge her and let her tell me all about it.
Often, a conversation with my her has a Groundhog Day quality to it. There are times that I listen to her recount a conversation she had with my grandmother three times in a span of three days. Or when trying to make plans for the weekend, multiple times I am asked what time and day am I planning to visit her. There is absolutely no point of me reminding her that I can basically say word for one the entire conversation she's talking about. It would only confuse and hurt her feelings -- taking the time to listen to a repeated discussion for five minutes does less damage in the long run than fighting a battle of memory that no one will win. And if it is something crucial I need her to remember, I write it down for her in multiple places and text it to my dad so he can follow up.
However, the lack of long-term memory sting more. There have been countless instances over recent years that I share a story from childhood that she was part of and I am met with a blank stare. The blank stare that reminds me that I am the only one who shares that memory now -- which is an odd uncomfortable feeling that is hard to explain.
Initially when situations like this began to happened, I'd attempt to jam the details down her throat as if it would jolt her memory. Nowadays, I change the subject quickly and move on to something else before more pain is felt between either of us.
But by far the most painful part of what strokes have taken away from my mother is without a doubt emotional abilities. A side effect of strokes that surprise many people is the emotional deficits it causes on the victim. My mother tends to shut herself away from the world when she is having a bad day, which usually translates into a string of bad days, or even weeks. These are the days where she rarely picks up the phone, or only speaks in short yes or no answers for a total of five minutes. During these cycles, her gaze rarely averts from the television screen and my words bounce of her like rubber. That is when it is most painful being the daughter of a stroke victim. That is when I find myself grieving for the mother I had pre-stroke, and the mother/daughter relationship I will never know.
Honestly, I am terrified of what the future will hold for my mother. In the back of my mind, it has always been known that my mother will never return to a "normal" state of being. That as the years go on, more complications will arise which is what her health track record has proven so far. But the unknown factor is what will the complications be, and at what rate will they start appearing?
Up until recently, I really believed that I had come to terms with my mother's health issues and being the daughter of a stroke victim. But in the recent months where her balance has become considerably worse and her speech has become harder to understand, it has become clear that I am still struggling. It pains me to type this, but in recent weeks I have found myself avoiding my mother because it is too hard to be around her and seeing first hand the latest decline. None of this is earth shattering, but the reality of the future that may come sooner than I had ever anticipated has turned my stomach. As my parent's only child, there is no one to tag team with besides my father who already carries the weight of the situation on his shoulders. As I look for resources online to help cope with this situation, the images look nothing like my situation. The adult children on the websites appear to my parents' age, while the parent mirrors my grandmother. To date, there has been no mid-20s/mid-50s duos on any of the resources that give insight on coping in this situation.
My mom is forced to cope, or at least live with, the reality her life after each stroke. There are ebbs and flows in her acceptance. But realistically, coming to terms with her body and living like post stroke will be lifelong process. Frankly, it will even become more difficult in the future and there is no doubt she understands that. Similar, I am discovering myself that coping with the realities and turbulence of being her daughter is also lifelong process with an ending that cannot even be comprehended. All I know is that I am scared, but so is my mom. And there is nothing that either us can do about it but to take it day by day. Or even hour-by-hour.