Traveling the Twisting Road Together
A guest post by Linda’s husband, Fred
Unforeseen threads of anxiety and concern often weave themselves into our narrative, challenging us to adapt, evolve, and dig deeper into our reservoirs of strength. When the person who has been your partner, your soulmate, and your anchor for over five decades is diagnosed with Inclusion Body Myositis (IBM), the world suddenly morphs into an unfamiliar landscape riddled with fears of inadequacy.
As the husband of a remarkable woman, witnessing the slow onset of IBM was like being caught in a storm of emotions, each more turbulent than the last. The doctor visits, bewildering symptoms, and the ultimate diagnosis brought up feelings of fear that I might not be enough, and that my best intentions might fall short as I integrate caregiver into my many other roles.
Receiving the diagnosis of IBM, that progressive disability that seemed to have more questions around it than answers, was like an emotional earthquake for us individually and as a couple. You know how it is. You are constantly imagining the future with your loved one, what you will do together, and the experiences you’ll share. Imagining a future where the vibrant woman who once competed in bodybuilding contests would be confined to a wheelchair was a reality too harsh to bear. I was angry and sad and fearful and even felt despair. I learned during this time that the five stages of grief that we have all heard of—denial, anger, bargaining, depression, and acceptance—were actually developed by Swiss-American psychiatrist Elisabeth Kübler-Ross to categorize reactions of individuals living with terminal illness. It made sense, and I watched myself (and continue to watch myself) go back and forth among these strong reactions.
My wife's reaction to her diagnosis and the possibility of future disability was a testament to her unfaltering spirit. A fighter by nature, she's a woman who's endured and conquered adversities, her story a tapestry of courage and unyielding determination. She experiences each of the five stages like anyone else, but she never seems to get stuck on depression. Instead, she focuses on accepting that what is happening is out of her hands, but how she responds to it is well within her control. That’s where she wants to spend her energy – where it can make a difference.
My role as husband is taking on new dimensions. Ensuring her comfort and well-being has never been merely a duty for me, but an intrinsic part of our love story. Collaborating with her, we concentrate on adaptation. I get out my drafting supplies and work on solutions that might enable her to maintain her independence as long as possible, tools for opening the dishwasher and drier, and designs for a more accessible living space. Being creative in that way has been a form of empowerment for me, a way to tell fear that it won’t dictate the terms of our existence, mine, hers, or ours as a team.
As I stand with Linda on this unexpected and poorly lit path, I find that I have a variety of emotions: deep love, fear of the unknown, seeing that we are both vulnerable but also strong and capable, and determination to stick together no matter where the road goes. The disease might lay claim to her muscles, but it cannot subdue the spark in her eyes or the resilience in her heart. And it’s those things that made me fall in love with her in the first place.
Like Linda reminds me:
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.