By Jacqueline Nestico
Imagine that you are about to undergo surgery. You opt for the less invasive approach, as only a minor procedure is needed. Your surgical team explains that potential complications can happen both during and after the procedure, but they assure you that ultimately it should be beneficial. When you wake up from surgery you learn that complications did arise. You are given some time to make sense of what has happened to your body. Meanwhile, medical staff are busy looking for a rehabilitation centre for you to begin therapy; you are told you will need “countless hours” to “regain your prior functional capacity” during this unforeseen transition. How do you learn to cope with such drastic changes when the surgery was supposed to fix things?
John is all too familiar with this narrative. At age 70 he was maintaining an active lifestyle, physically and socially, and was still productive in his career. But on a November day seven years ago, John had minor heart surgery to repair a leaky heart valve and improve his blood flow. Rather than opting for open heart surgery, he chose the less invasive procedure where the surgical team deflates the lung before mending the valve. This intervention had not been performed in a while and John was first in line to undergo the surgery.
Unfortunately, surgical complications arose. His right lung was unable to re-inflate in time and his left lung failed to make up for the air loss. This caused John’s body to become oxygen deprived, leaving him in the intensive care unit for six weeks. The oxygen deprivation was specific to John’s optic nerve, resulting in blindness, and to his right leg, which later required amputation. He remained in the hospital for two months before transferring to a rehabilitation center. There, he took his first steps with his newly fitted prosthetic leg.
As he awoke from the surgery and learned of the complications, John remembers trying to come to terms with the severity of the situation and why this happened to him. John reflects that the surgical complications leading to his blindness and limb loss resulted in the biggest, most unique transition of his life.
The greatest challenge of John’s rehabilitation journey has been relearning how to walk with the combination of his prosthetic leg and blindness. He comments that this experience has been such an anomaly as “there are not many blind amputees to base treatment and coping methods on.” John relies on his comprehensive team of rehabilitation specialists to develop innovative strategies that address his amputation, while also taking into consideration his blindness.
Full recovery from his dual disabilities is not an option, so John uses unique strategies to compensate for his limitations. For example, individuals who are blind use a white cane to navigate their environment. However, it is difficult for John to walk using a white cane because his blindness coupled with his amputation affects his balance. Instead, John uses a walker for balance support which also allows him to feel out his environment.
“I’m not going to grow another leg, so I must learn to compensate.” – John
Being blind also makes putting on his prosthetic leg more challenging. To support John’s independence, his prosthetic leg was designed with an alignment bump on the front. This way, John can rely on his sense of touch to feel the orientation of his prosthetic and ensure it is on comfortably to minimize discomfort, especially if he plans to wear it for an extended period.
In terms of his second impairment, John comments that “the blindness is what it is … my vision cannot be magnified, so rehabilitation of my eyesight is not really an option.” Despite this restriction, he is interested in pursuing artificial means that can allow him to process written words. For instance, John has visited the School of Optometry at the University of Waterloo where they are working on a device for the visually impaired that can read text and relay it back to the individual.
Another important element of John’s rehabilitation experience was transitioning from the rehabilitation centre back into his home. At this stage, John had a few choices: he could move into a more accessible home such as a bungalow or long-term care facility, or he could make his current home more accessible. John and his wife chose to renovate their home of 29 years to allow John to move around more easily in an environment familiar to him. They installed an elevator, reconfigured the master bedroom, enlarged doorways, and installed hardwood floors. Now John remains self-sufficient and is thriving in his home environment, where he has regular physiotherapy and strength training sessions, as well as his home office.
In the years since beginning this unique transition, John remains active in his career and has no plans of retiring so long as he can get around. He finds his work as a financial consultant fulfilling and satisfying as it allows him to maintain various social and business connections. John enjoys his career, with it taking him to New York, Barbados, and Europe.
“Remaining adventurous [has been] an important feature of this transition.” ― John
John is grateful that he can continue to function within his limitations. “I am fortunate that, given the surgical complications, the damage was not to my brain and I remain cognitively capable,” he states. John sees his current physical state as “just another challenge.” He recognizes that he has been conditioned his whole life to face and overcome adversities, including losing both his parents at a young age, breaking his neck playing varsity football, losing his first wife to cancer, and surviving cancer himself. John’s resiliency and positive attitude developed following hardships have benefitted him greatly during his transition. He expressed that facing and accepting challenges has become “a little bit of my DNA.”
Today, almost seven years post-surgery, John affirms that he “enjoys a good quality of life, although different from what [he] would have expected.” Preparing for unforeseen outcomes following a supposedly simple surgery is difficult to fathom. John’s resilience throughout his unique rehabilitation experience is inspiring. Rather than succumbing to these challenges, John accepted his new self and was willing to explore creative solutions. John learned to embrace a new aspect of his identity as a blind amputee and is proud of his accomplishments given his rare rehabilitation experience. It is John’s hope that sharing his story inspires readers to be bold and willing to explore creative solutions for their own personal challenges.
Thank you, John, for sharing your story.
Featured illustration by Daniela Casas for rehabINK.
To refer to this article, it can be cited as:
Nestico J. Adapting to sudden loss of limb and sight: A rare rehabilitation experience. rehabINK. 2019;7. Available from: https://rehabinkmag.com