By Rodney Anderson
Bill and his son Brett are long-distance runners and in the best of health. If you knew the younger man, Brett, you would be as shocked as I am to receive relayed news from the family that includes frightening words like “tracheostomy’’ and “nerve regeneration’’ and something called “GBS.’’ If you know the family as I do, though, you are not surprised to hear about “Popcorn Factory treats’’ and “cross-country prayers’’ and “Christmas wishes.’’
Please read part of the letter I recently received from Bill after his son first felt fatigued on a run and then was walking in his backyard in Washington, D.C, before crumpling to the ground and being rushed to the hospital for a spinal tap that revealed his illness:
Dear Friends:
Today marks Day 37 for Brett in the Neuroscience ICU and ends a week with some positive developments.
On Tuesday Brett had a tracheostomy and the breathing tube was removed from his mouth. The ventilator is still in place to assist Brett’s breathing. Tuesday’s procedure reduced the discomfort to Brett from the breathing tube and allowed the high-octane meds to be reduced.
It was terrific to see Brett without the breathing tube and able to more clearly communicate by mouthing words, sentences and paragraphs. Brett would clearly give us a solid “D’’ for our lip-reading skills. … Brett and his wife seem to share more, as only lovers can do.
The plasmapharesis has begun again and there is hope that this round provides the launching pad for more nerve regeneration and progress with the limbs. In fact, Brett has better lateral movement of his arms and he told me yesterday there seemed to be some stirring in his legs. He moves his fingers at will in a limited way.
Each day, as loved ones and caregivers, we learn more and more about GBS. It was just this week that Brett was able to focus on what had attacked him. He knows his condition is not permanent and his health can be restored with hard work. He is committed to that recovery one day at a time.
The next steps in level of care will be determined mainly by Brett’s breathing ability. GBS starts its insidious journey in the lower extremities and moves north. The recovery starts in the upper body and moves south. Therefore, the breathing strength we are witnessing is a good sign.
This week Brett asked me, “Are you running?” We both agreed we would be pounding the pavement together very soon. His fitness and discipline going into this ordeal will be helpful in his recovery.
We can’t thank you enough for your continual flow of e-mails, calls, messages, personal visits and prayers. We have water from Lourdes, Christmas sprigs to brighten our lives, brisket to nourish, sack lunches at the hospital, chocolate for mental acuity, Popcorn Factory goodies, countless offers of “any help you need” and all around love and support.
Prayers are being said across the country and across the world. Daily meditations are dedicated to Brett and healing vibes are landing by the minute on Brett’s doorstep.
Brett has always been an organizer and he’s put us all in touch for the holiday season. You already know what we want for Christmas.
Love, Bill
Folks, I’ve changed the names of my friends in the story but the story is true and it is ongoing. I am involved in it on a number of levels, which include how this story ties into The Medical Debt Responsibility Act. Brett’s illness is not the result of any misdeed on his part, not something he asked for, not something anyone could’ve planned for; it is simply an act of misfortune resulting in a hospital stay and medical care that will cost his family hundreds of thousands of dollars. There are no easy answers here, no quick call to the Canadian pharmacy and no snap of the financial finger and nothing but hard work and planning ahead. Brett’s family will work towards paying those bills but if even the tiniest bill is temporarily missed, disputed or misplaced, that bill becomes attached to the family’s credit for a period of seven years … and that family’s credit can be ruined.
Bill has allowed me to tell his family’s story so I could urge you to learn more about The Medical Debt Responsibility Act, our bill being considered on Capitol Hill right now. Learn, and then act, by contacting your representative so he can do the same.
Bill has also allowed me to tell his family’s story because Brett can use all the daily meditations, prayers and healing vibes we have to offer.
That is part of what we can do to give Bill and Brett’s family what it need for Christmas.
