THE BLOG
11/06/2012 03:43 pm ET Updated Jan 06, 2013

Living With the Medical Elephant in the Room

Scrolling through my Twitter newsfeed while home from work Monday afternoon, I came across a tweet saying that it was World Stroke Day. A day where people raise awareness for the devastating effects strokes have on 795,000 people annually in the United State. After the tweets -- and possible Facebook posts of the day -- 90 percent of people who read the post forget about the statistics they've read or the stories of stroke survivors featured as the faces of stroke patients. They will go about their daily activities, feeling that because they retweeted the hashtag #worldstrokeday that they helped raised awareness.

World Stroke Day is more than a hashtag or 24-hour call to action day for my family -- it is our everyday life. My own mother is a multiple stroke survivor and heart attack survior at the ripe age of 54 years old, experiencing her first major stroke at age 46. I remember going on the internet at age 15 searching about how to care for a parent who recently had a stroke.

Images of middle-aged women popped on the screen, brushing the hair of geriatric patients in their 70s or 80s. The information given was for adult children trying to care for parents who were in the golden years while balancing their own marriages and children. None of these resources reflected my family's situation: a teenage girl trying to figure out how to help her mother deal with the effects of a stroke that affected her in a life-altering way. Even at age 23, it is hard to find information for adult children in their 20s who have parents who are stroke patients.

In the last eight years, my mother has suffered three major strokes in addition to mini strokes, called TIAs, that have left her impaired physically and cognitively. She is unable to walk far distances without limping, and a trip to the grocery store exhausts her. Writing a grocery list is a struggle for her because of the effects the last stroke had on her dominant hand. I've watched a woman who thrived through work and social activity become a shell of a person who constantly lives in fear of the next stroke. It is a fear that lives in our house like an elephant in the room that never seems to leave. Every headache, show of confusion or bad day brings on an uneasy feeling. There is no pattern or sense to when my mom will have another stroke, nor can the doctors say what the next one will damage. Each one has taken another bit of my mother's personality and forces us to adjust to a new normal. A new normal of side effects of additional medicines, relearning daily skills, and trying to find the silver lining of an unfair situation.

One thing that isn't stressed enough is that a stroke affects the entire family. I've watched how my father turned into a caregiver each time my mom had an episode, and how they both were forced to adjust with their new roles: a chronically-ill wife and a husband who became a caregiver.

We went from a two-income family to a one-income family that has been cut in half because of the effects of the economy. I watched my parents debate about going to the hospital because my mother does not have insurance, and she did not want to spend the money on hospitalization if it was only a "small stroke." Growing up middle class in America, I never thought that my mother would have to choose not to seek medical treatment out of fear of astronomical health care costs.

I had to learn that stroke patients have trouble expressing their feelings and can retreat into themselves because they feel isolated from "normal" people. I had to come to terms with the fact that stroke patients suffer from memory loss and cannot always remember certain family memories. Talking about past events can hurt their feelings, because they either cannot recall the day or it reminds them of what they were before. It is a waiting game to see what will return to her each time -- and then a whole other process to accept what does not. I learned that taking it day by day with a chronically-ill parent is the only way to get through the week without breaking down during difficult times.

Most importantly, I've realized how important it is to treasure each holiday and celebrate each birthday. Each July when we get to celebrate another birthday with my mom, I end up tearing up while we sing the birthday song. She calls me overemotional and tries to make us laugh by making a joke, referring to herself as the energizer bunny. But even with the thankfulness of the gift of another year with her alive and functioning, the elephant in the room appears, making us all wonder: Will we all be here next year, or will we be celebrating from a hospital bed, or worse? It is in those moments that I stop myself from snowballing into the what-if game and try my hardest to focus on the present moment.

So as I share this post, I write it not only in honor of World Stroke Day, but for the millions on people who are forced to live World Stroke Day every day, and for those who will one day be forced to adjust their lives to a new normal.

For more by Patrice Bendig, click here.

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