It started innocuously enough in October 2015. After a weekend of yard-work, Becky woke up and noticed that she was unable to bend her pinky. She visited a doctor who thought the problem might be related to a herniated disc. Before agreeing to surgery, Becky sought a second opinion and horrifyingly learned that she had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a degenerative illness that affects nerve cells in the brain and the spinal cord. ALS is considered terminal and interferes with activities of daily living: walking, speaking, swallowing, and eventually breathing. ALS is usually diagnosed between the ages of 40 to 70 (age 55 is average). The speed of disease progression varies, with an average post-diagnosis life expectancy of two to five years.
Becky was one of my Beast Barracks roommates. She recalls our serial haircuts — daily trips to the barbershop in an attempt to tame women’s hair. She reminded me that the barbers had me wear the uniform cap while cutting to try to get the sides short enough. She also mentioned our gray trousers that were issued with nylon zippers and no pockets. Some zippers broke before our first parade on R-day afternoon. I remember pinging to a lunch formation–in the wrong uniform–the three of us distinctive in white-over-gray in a sea of olive drab fatigues. One never forgets her first slug.
Becky comes from a West Point family: the only girl with five brothers. Her father was USMA Class of 1946 and three brothers are also grads in the classes of ’77, ’81, and ’84. Early deaths prevented the other two from participating in the family legacy: One brother drowned at age 5 and another died of leukemia at 17.
Becky told me that military veterans are twice as likely to develop amyotrophic lateral sclerosis (ALS) as those who haven’t served. Scientists haven’t figured out the linkage between serving in the military and developing ALS, but the VA considers ALS as a service-connected disability. According to the ALS Association, veterans have increased risk regardless of branch, assignment location, or era of service.
Becky has limited ability to move. A few months ago, her aide forgot to secure her seatbelt. When the driver braked suddenly, Becky flew into the dashboard. She broke both feet and received a laceration on her forehead. A few weeks ago, assistants were transferring her and didn’t realize that her shoulder was awkwardly positioned. The wrenching motion tore her rotator cuff. If her ear itches, she has to alert someone to scratch it for her. If she has a tickle in her throat, an LPN squirts water into her mouth using a syringe. Even the liquid needs to have a thickener added so that Becky doesn’t choke.
Since her speech is distorted and the effort to speak exhausting, Becky “talks” with her eyes. An assistive tablet recognizes the letter her eye focuses on and spells out conversations on the screen.
In July, Becky had a feeding tube surgically implanted to counter a 30-pound weight loss. The last meal she ate was a dish that our classmate Donna Alesch White fixed and shared. While the feeding tube solves the nutrition problem, it bypasses the mouth: there is no taste. Now that she can’t eat, food fascinates Becky. She calls herself food obsessed. During my visit, the cooking channel played continuously in the background.
Becky has a trach appointment scheduled at Emory University Hospital this week to discuss her options. A tracheostomy is an incision in the windpipe that allows mechanical ventilation. ALS patients eventually lose the ability to breathe on their own, so a vent breathes for them. For Becky, getting a tracheotomy is a do or die decision. She knows that without this surgery, even with the limitations it imposes, her chest muscles and diaphragm will soon be too weak to draw breaths. On her tablet, she blinked out the words: “Trach or die.”
Becky has passed the point where she can live on her own. Her son lives in the house with her and her newlywed daughter is a few towns away. For the last 15 years, it has been Becky and her children — a tight family unit, although Becky’s illness has changed the emotional dynamic between them. Becky was always the stoic one. Her children relied on her and knew she would always help them through whatever situation arose. Now, they know she can’t fix things. She tries to reassure them that she’s alright. Becky’s brothers live in other states, but they call and visit regularly. Friends manage the details of care–ensuring someone can help with actions most of us take for granted: feeding, toileting, nose blowing, itch scratching.
Until now, few of our West Point classmates have known about Becky’s illness. I asked Becky how much information to share. What did she want others to know? My concerns for confidentiality caused her to roll her eyes as if to say: “What privacy?” When you rely on other people for all of your daily needs, you have traded privacy for staying alive. The best a person hopes for is kindness and dignity. Becky wants to use her illness to raise awareness. She hopes her openness and telling her story will ease someone else’s way.
“Be kind. Everyone you meet is carrying a heavy burden.” Ian MacLaren
There are different kinds of courage. It takes courage to jump off a platform to pass Survival Swimming or to head out on a patrol not knowing what dangers lurk. Then, there’s the bravery that allows someone to face illness and eventual death with grace and serenity. Unlike the uncertainties of entering West Point as a new cadet, Becky knows what she faces. The outcome of this beast is certain, even if medical interventions buy her some time.
Becky Blyth Hardy
12543 Wexcroft Lane, Alpharetta, GA, 30009
Acknowledgement: This is Becky’s story to tell. She has read it, clarified certain points, and given permission to share.
© Joan S Grey, 22 AUG 18
IndexCardCure™: a heroic journey