by Emily Brechting, Ph.D.
Clinical Support Psychologist, Susan Mast ALS Foundation
I’m a Chairbearer. That is, Bearer of the Chair. Not sure about this term? Read on.
Recently I visited my brother Dirk in the Bone Marrow Transplant unit. It had been about two weeks since he was hospitalized with Influenza A (make that two strains to make things extra interesting) and pneumonia. He began receiving much-needed care to help him tackle these “ordinary” illnesses but his recovery from these stalled. A large pulmonary embolism was discovered that was impacting function in both lungs and emergency steps were taken to break up this clot. What followed was a complicated balancing act of blood thinners to eradicate the remnants of that clot and a concerning inability to control bleeding from several wounds including his incision site. The past few days have shown progress and provided some much-needed encouragement.
His bleeding is mostly under control. He continues to recover from the influenza, pneumonia, and procedure. But these have taken their toll. He is weak. And weary. The day before my visit, his physical therapist arrived to begin the process of bolstering his strength and assessing readiness to be discharged sometime in the not-so-distant future. He moved around a bit in his room for therapy and then was exhausted for much of the day. During my visit, his PT wanted to see if he could climb a step or two and try to walk for a bit. He was willing to try, though in reality he looked like he wanted to be left alone to stay in bed.
Sidebar: I could write a litany of posts about my brother’s tenacity, drive, ability to tolerate pain, and incomparable willingness to push himself. He is incredible.
Now he was vertical. Leaning on his IV pole for stability, he headed toward the door of his room. His PT turned to me, handed me a folding chair, and asked me to carry it. She wanted him to have a place to rest when the journey became too taxing. “The chairbearer!” I exclaimed. He and I bantered about his status and high position at having a chairbearer follow him around. What’s next? A cupbearer?
All joking aside, I was struck by the profoundness of bearing the chair as I walked behind him. It resonates with me that being a chairbearer is at the very core of community (whether with family or friends) and central to my professional life. We join the journey of those we love; it is an honor and privilege to carve out space for our dear ones to pause, rest, and recuperate when they are weary. When working with someone professionally, my goals are essentially the same. Friends, let’s look at this for the honor that is. Sure, the chair might be bulky and a bit awkward sometimes. Perhaps you prefer a quicker pace. But let’s embrace this chair-bearing role and serve each other well.
By the way, he didn’t need the chair. He made an entire lap around the unit and flopped back into bed. Exhausted. Satisfied. Encouraged.
by Emily Brechting, Ph.D.
Licensed Clinical Psychologist, Susan Mast ALS Foundation
what I’m learning about grief by Nancy Cross Dunham
what I'm learning about grief ... is that it need not be a heavy gray shawl to wrap myself in, clutching my arms tightly across my chest
nor ... need it be a granite rock that I should try to push away
neither is it ... ... at least, no longer ... a vast dark ocean ready to pick me up and slap me down without warning
what I'm learning about grief ... is that it is not me, but that it offers to become a friend
a friend ... who will lightly lay a hand on my shoulder when tears come in the dark
a friend ... who will laugh out loud with me at remembered silly moments
a friend ... who can still hear the music of our life
what I'm learning about grief ... is that this friend doesn't intend to leave me
but promises to hold my hand to carry my memories
a friend ... who will bear witness to my love as I venture toward the next day and the following night
In May, we hosted our first Gather meeting. During these virtual meetings, loved ones of ALS patients connect to share their grief, support one another, and tell stories. Gather involves laughter, tears, and plenty of encouragement. While grief is unique to each person, Gather makes it possible to travel this journey with others who understand ALS and loss.