It could be argued that there is no upside to learning that you have a terminal illness. Coming face to face with your own mortality is terrifying and disorienting. And while it’s an experience that each one of us will face at some time in our lives, it’s not one that most us would actively seek out. We know death will come for us someday. But until we hear “the news” from a person wearing a somber expression and a white coat, we can, for the most part, stave off that knowledge with a firm “Yes, but not now!”
And yet, the truth is that learning that you’re going to die sooner rather than later can be a blessing in disguise. Since we are all going to die someday, the person who gets advance notice has options that those who die unexpectedly simply don’t get. There is the option to apologize to the people you have wronged; the option to say things that have been too long left unsaid. There is the option to let go of pretense, and to give and receive love in a truly authentic way. And, perhaps most important, there is the option to make memories with those who will be left behind when you’re gone.
Tim was 60 when he learned he had ALS. He had a particularly aggressive bulbar form of the disease that was attacking the nerves in his upper body relentlessly. He was still able to walk short distances with the aid of a walker. But he had difficulty swallowing or speaking and had limited use of his arms and hands. His neurologist told him that his prognosis was not good. He would likely live only another 18 months to 2 years.
Tim took the diagnosis very hard. He had planned to retire to Palm Springs the following year and spend his days playing golf. Instead, he was looking at progressive paralysis, increasing disability and certain death. He was despondent, terrified and incredibly angry.
But when that first wave of intense emotional turmoil had passed, Tim decided that he wasn’t going to spend the next year and a half feeling sorry for himself. And so he came up with a plan. He and his family had vacationed in the Outer Banks of North Carolina every summer for many years when the children were young. And he still cherished those memories more than any he could recall. There were lazy days at the beach playing in the surf, barbecues on the deck, and plenty of down time to hang out and enjoy life with his wife and kids. And as he thought about the fact that what would likely be his last summer was fast approaching, Tim decided to take his whole family to the Outer Banks one last time before he died.
Making the arrangements for the trip was easy. Summer was still a few months away, and Tim easily accomplished most of the organizing online. But the execution proved far more difficult than either Tim or his family thought it would be when they made plans. Tim’s disease had been progressing fairly rapidly, and when their departure date finally arrived he was very weak. The trip to the airport wore him out so badly that by the time he was seated on the plane he could barely hold up his head. The four-hour journey was terribly uncomfortable for him and incredibly stressful for his family: What would they do if Tim suddenly couldn’t breathe?
But Tim made it to his destination, and his wife rented a van and drove the whole family 50 miles to the beach. For the next seven days, Tim sat in a lounge chair watching his children and grandchildren play in the surf. Despite his difficulty swallowing, he ate burgers and barbecued chicken and washed it down with sips of his favorite Scotch. And each night after dinner, he took his grandchildren in his lap and listened to them tell him all about their day.
Meanwhile, Tim’s wife and children took photos constantly, determined to preserve the memories they were making with their husband and father for the very last time.
To this day, Tim’s daughter Marie says those photos are an enormous comfort to her. “They aren’t just pictures, “ she explains. “They are pictures that remind me of who my dad was. When I look at them it’s like he never left us…I can’t tell you what a gift that is.”
In a perfect world, making memories would not be something we put off to the end of life. In a perfect world, each of us would cherish every moment and savor the joy of simply being alive. We would make more time for the things we love to do and let go of the petty annoyances that steal our time and our joy.
But sadly, we do not live in a perfect world. And most of us stay firmly rooted in the denial of death until some monumental event like a terminal diagnosis wakes us up. Even then, it can be very, very difficult to navigate through our complex emotions and come to terms with the reality that the time to make memories and enjoy life is now.
If you’ve been told you have a life-limiting illness, take all the time you need to grieve. Feel the fear and the sadness and the anger, and don’t be afraid to reach out to your loved ones for support. But as the roller-coaster of emotions begins to slow down, try to look to the future and think about how you want your last days to unwind. How can you make them memorable for the people who love you? How can you leave a legacy that will remind them of who you were? What memories can you make with them that will sustain them when you’re gone?
You don’t have to plan a trip across the country to leave a lasting legacy of love.
“The past beats inside me like a second heart.”
~ John Banville
Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.