All tagged Multiple Sclerosis

A Death in the Family: Our Stories Live On

Last week, my cousin unexpectedly died. In some ways, the person I had known as a kid and young adult had died at least a decade ago.

Richard was film-star handsome, charismatic, athletic, fun-loving, intrepid. The mountains offered both invitation and challenge: He was an avid climber, environmentalist, social justice advocate and math whiz. For decades he was a senior systems analyst at Raytheon, and in the early 1990’s was granted a patent as the inventor of a process that took data and translated it into visual images and photos.

These stories unfolded during Richard’s memorial service. His oldest son, a millennial doppelganger of his father, told the assembled mourners, and celebrators of his life that his father loved stories, and it would have gratified him to share some.

As a child of the 1960’s and 1970’s Richard was politically active, and as a teen served as a state liaison for George McGovern’s presidential campaign.

He was quick to laugh, sometimes quick to anger, to which his son attested, and passionate about social policy, politics and the Red Sox.

Another fact about Richard: He suffered from a form of Multiple Sclerosis which at first fatigued him, then robbed him of his ability to walk, swim, and hiked. His voice was weakened to the point he had difficulty answering his voice-activated telephone. For years, he lived in a quadriplegic body, yet retained agency in his life. His beautiful intellect continued to explore, solve and create. He argued – er, participated in animated conversations with his siblings and children.

Friends told stories of teenage hijinks, his stubborn refusal to give up on a hike as inclement weather stranded him on a mountain top. The same stubbornness that would define the rest of his life as he weathered a decline of his physical body, while his spirit remained strong. Although steadfast in his ideals and worldview, Richard lovingly accepted and welcomed every kind of people into his family and his world.

Over and over, I heard the words kind, passionate, committed, stubborn.

For me, I’ll remember him as a cool 17-year-old, eyes sparkling with mischief and intelligence. His muscular wrestler’s body. The good-natured way he included his younger cousins in conversations probably way beyond our heads and softball games beyond my paltry athletic skill level.

We tell stories to keep memories alive, share special things we’ve learned from their lives. Our life stories connect with generations and keep the torch of our beliefs and passions burning. Our stories, those of our departed loved one become touchstones that can guide and comfort us during periods of grief and healing.

Sharing stories also a positive, joyful light on a life. Many years ago, when my first husband died, I stood surrounded by family viewing his body. My first husband, never at a loss for words, lay both lifeless and silent. I commented that it wasn’t a party without him telling one of his (bad) jokes. Death affords the opportunity to find the funny in an otherwise tragic time.

In nearly two years of incredible, horrifying and often tragic stories, this is one more. A personal one. Death, like so much in life, is personal and universal. Our stories provide no resolution, but a continuation. I mourn the loss of Richard, yet, I have created my own story about him. In my memory and imagination, he scales the mountain, reaches the summit, and beams with joy and triumph. His body strong and vital. His spirit as bright as the late morning sun.