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For in grief nothing “stays put.” One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, “I never realized my loss till this moment”? The same leg is cut off time after time.”
― A Grief Observed
One of the primary reasons I began to teach about grief is because I have said all the wrong things.
There are a couple of things I know for sure: While sometimes we may miss the mark in communicating comfort, oftentimes we do not. Hurting people often prefer something said over nothing said. Also, grieving people grieve differently–every moment of the day, feelings may change. The quote from CS Lewis reminds me of the journey on a roller coaster. Sometimes when we make a good-hearted attempt at comfort, our hurting friend may be twisting at the bottom of their sorrow, or coming up for air.
I remember the day I walked into my mom’s house and asked the big question, “How are you?” She snapped, “I hate getting asked that!” My mom was not a snapper. What she wanted to answer was, “I’m well! I stood up to give a hug today, held a baby, and cooked dinner.” Instead, her day was a series of losses.
I learned to walk in the door and say, “Hi! I’m so glad to see you today!” I think it helped a little.
-Tricia
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Frequently I am asked how I am. I don’t always know what to say. It is a dilemma knowing how honest to be or how much information to give to the inquiries and trying to discern how much information the inquirer really wants. I want to be honest, genuine, and transparent. I am not sure I always am.
Three things motivate my sharing honestly about “how I am.” First, I believe my steps are ordered by the Lord. Therefore, what happens in my life is to be shared. Early in my adulthood years, when I faced some difficult life challenges, I thought, that if someone else could benefit from my experiences, then I would share my story(s). Second, with humor, I have always said any life experience that makes a good story is worth the adventure. This adventure is no different, just the most difficult and not so humorous. The third motivator is education: this is an opportunity to share the ALS story and bring it to the attention of people who are not aware of the devastation ALS brings to the person and their families.
May 13, 2013, Jeff Lester wrote in an article “We Need More of that A-Word” for the MDA/ALS Magazine:
“Part of the problem is the number generally associated with ALS — 30,000. Even if you take this number of people with ALS at face value, which I personally don’t, the number is still extremely inaccurate since — unlike many other conditions, even terminal ones — ALS directly impacts more than those who have the disease because of its extreme level of devastation. Beyond dismantling someone physically down to a quadriplegic, it also financially causes devastation that, at the very least, affects the immediate family. It physically takes a toll on caregivers, as the effort and time needed for care increases as the person with ALS becomes increasingly disabled — which also takes a toll if the family has school-age children since this directly impacts their lives as well.”
ALS is a harsh disease, but I really don’t think everyone who asks how I am wants those details. When I am asked, I believe the question is relevant to that particular moment. Gratefully, I feel good. I just can’t walk, and I am getting physically weaker. I do not have pain. I do get tired faster than I did before my last birthday. Sometimes I am asked, “How does tired feel to me?” The answer is the same as it is for anyone, just tired, ready to call it a day by early evening (really, late afternoon). I love to get into pajamas by 7:00 pm, don’t you?
With that being said, depending on where I am, who is around, and how tired I am…if you push me a little, I may get a little teary-eyed, smile, and say something flippant, like…I am okay, considering the circumstances. My issue at the beginning of this journey and still is today is not the physical limitations but the mental and emotional challenges. I hate the disease. I hate that I can’t walk, I hate that I have to rely on others for basic needs knowing I am still only at the beginning of this journey, and I really hate heavy restroom doors.
Please don’t stop asking, I don’t want to be ignored (as if I would let anyone ignore me), and I don’t want the ALS to be the “elephant” in the room. If the circumstances are right and I am feeling good, I will give you more information than you probably ever wanted, especially if you ask how the disease is progressing. It is not always about giving a positive spin, but it is always about honesty. Just keep loving and encouraging me…I need you.
–Susan
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Grandson Nate and his beautiful daughter, Della
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