The doctor’s thoughtless comments and those of others sought to erode our emotional well-being, not only as we faced this major decision, but also those yet on the horizon. Our psyche and fortitude were easily shaken by a careless word or mannerism, and by the attitude of the obvious naysayers; and conversely, boosted by a sensitive and caring bedside manner. The ability to truly empathize made a world of difference. Our family was no longer moored to safety. We did not choose to be in this position, it was thrust upon us. Adrift, our lifeboat was battered and easily tossed about by prevailing winds. We couldn’t bail fast enough to keep our overwhelming fear and grief at bay. The wind and huge waves threaten to capsize us at any moment—we simply were not prepared. A careless comment compounded the upheaval we felt. Some individuals did not seem to comprehend the power of their words—words that threatened to sink us rather than lift up and support us. 

There were three naysayers. Earlier, the first discouraged us from waiting a week to see if Matt’s condition might improve. I nicknamed him Dr. Gloom-and-Doom. The most recent offender, Hope Slayer, didn’t believe Matt had rehabilitation potential. He wielded a hatchet as he pronounced his verdict that no way was Matt a candidate for acute rehab on his unit. I did not refute his assessment—Matt had indeed suffered a severe traumatic brain injury and if he did not meet their admission criteria, so be it. I did take umbrage with how he said it. He did not offer the salve of compassion or empathy as he bluntly shared his negative opinion of Matt’s future. In his mind, Matt should be transferred temporarily to a long-term care facility, weaned off the vent, given low-level rehab—obviously because Matt would be unable to participate—and discharged from that facility in no more than 2 weeks! When we informed him of our plan to ultimately bring Matt home, a more forceful blow nearly splintered our new resolve to move forward, “Matt will be bedridden and need 24-hour care!” He vehemently stated that there was nothing we could do for Matt here and therefore my husband and I should go back to work and reserve our available time off until, or if Matt, was able to come home with us.

Like the previous physician, his opinion was in complete contrast to recent discussions with Matt’s neurosurgeons and just about toppled our fragile stability. Chaos and confusion reigned, again. Would it never end? Our family rehashed and confirmed our collective understanding of Matt’s prognosis, and then asked for a stat meeting with the chief neurosurgeon. Wonderfully, he re-asserted that the planned trajectory of care was to transition from the ICU to a subacute floor or intermediate ventilatory rehab unit, and then to an acute inpatient rehab hospital. In his estimation, before Matt could come home, he would need three to four months of intense rehab to progress from fully dependent to an assisted level of function. Once home this doctor encouraged continued rehab as an outpatient. Our family breathed a huge sigh of relief and did our best to put our fears aside.

These two experiences, and one more yet to come, caused undue consternation. As you will soon learn, number three, Dr. Curmudgeon, took the wind out of my sail the very day Matt relocated to an Inpatient Hospital.

Gratefully, these individuals were the exception. Many more encouraged us—graciously cloaking conversations with humility and compassion, and helping to buffer the brunt force of harrowing reports and grim news. They walked alongside us. Their kindness did not alter the unavoidable storm that raged around us but was the life preserver that keep us afloat. In particular, the Critical Care doctor who signed off on Matt’s departure endeared himself to me with his thoughtfulness and kind words. After a harrowing day of uncertainty, in which he faithfully advocated that care proceeds at a hospital in New York, he stopped by one final time to say goodbye and to wish us well. He told me privately that his father, at age 28, had also had an AVM hemorrhage. He had been a physicist and ultimately taught himself math and physics again and returned to work. When I commented that not everyone agreed with our decision to keep Matt alive, he declared that we had made the right decision. Why? Because Matt was young, in good health, and most importantly, his chance of recovery was good simply because he had been so smart. Oh, how that personal touch and encouragement gave me enough hope to continue on this precarious journey—even knowing full well there were no guarantees. And, only time would tell.

In closing, these experiences have since caused me to wonder, How do we advocate that all healthcare providers find a better way to speak hard truths? How do we help them understand that loved ones—spouses, parents, children, and significant others, simply want the medical staff to share their opinions and recommendations regarding our loved one’s condition, along with the research, and their personal experiences? Share don’t dictate. Don’t judge. Help us to arrive at our own decision, a choice that we have to live with, not them.

But for now, at this moment, my attention was needed elsewhere.