In relationships, I've always been the one with the physical challenges. The pain, the fatigue, the long list of "I can'ts." I met my first husband two months after my first spinal surgery. In subtle and not-so-subtle ways, my chronic pain was part of the scaffolding of our relationship. He was the well one. I was the one with the limitations. In that relationship, the pain and fatigue were problems to be conquered, suppressed, or just plain ignored. They were the like the crazy aunt in the attic. We both knew they were there. We just didn't let them impact our lifestyle or decisions.
In those years - my late 20s to mid 40s - I was not in the habit of listening to and accommodating my body. I fought the pain, denied the pain, and pushed through the pain. I wanted to keep up with him, with his boundless energy, curiosity, novelty seeking. He was always on the go, always hungry for new experiences. He loved to entertain, to travel, to explore, to experience life intensely. For 18 years I endeavored to live at his pace. I finished my PhD, then worked full-time, before and after our two kids were born. We had theater subscriptions, dinners out, and day trips. We hosted dinner parties and we traveled. We regularly took 11 and 14-hour road trips to Michigan and Chicago, where his family was, or 6-hour ones to Boston to see mine. I just dealt with the pain it all triggered.
When our kids were one and four-years-old, he got a month-long fellowship at a university in Paris. So off we went, with two strollers, two car seats, and a pack-and-play, on flights, trains, and metros. It was an amazing opportunity, we thought. How lucky we are! And it was. It was also brutal on my body. I was exhausted and in serious pain the whole time. While he worked during the day, I would walk the cobblestone sidewalks to get groceries with a 25-pound baby in a stroller and a four-year-old who complained that she didn't want to walk. We somehow found a step that attached to the stroller so that she could ride, which meant pushing more like 60 pounds over those knobby, medieval streets with no curb-cuts. In hindsight it feels completely crazy. At the time, though, I convinced myself how lucky we were to be in Paris.
Then came the inevitable reckoning. Beat it up enough and the body will ultimately say NO. In my case the physical collapse and the end of the marriage coincided. Two injuries, three back surgeries, a divorce, and the end of my career all in a three year period. With two adolescent kids. My life as I'd known it was utterly transformed.
When I met Lonnie, we were both in the throes of divorce and I was navigating surgeries, rehab, disability, and single parenting. He is a natural caregiver, generous - even selfless by nature, calm, patient, strong. Our relationship evolved as the opposite of my marriage - it was quiet, calm, slow. It was what my mind and body needed to heal at that time. His quiet strength and warm presence were a balm to my soul. He took care of me in a way I had never experienced. And I provided him with understanding, kindness, and caring that he had never experienced. We have healed, together.
He has always been mindful and protective of my physical vulnerability. He does all the things in our life - large and small - that require physical effort. He's our home handyman, lawn mower, gardener. When we go places, he usually drives. We are both content with a relatively quiet lifestyle. Since COVID began, he's done all the shopping and errands. I work from home, and so I can go for a week or more at a time without leaving the house, other than to take my morning dog walk. It's hard to describe the sense of safety and security he has provided for me. It is a profound and healing gift. Not that we haven't had our problems, like any couple. We've struggled. But that core of mutual care and nurturing has been steady.
Then, a couple of months ago, I read Alan Gordon's book, subscribed to the Curable app, and started with pain reprocessing therapy. For the first time in over 30 years I began to believe I could have a pain-free life. I felt empowered, hopeful, energized. It was thrilling. I was learning to turn off the pain with my mind. As is my way, I also dove into the science and research on mind-body syndromes, neuroplastic pain, psychophysiological disorders, and began integrating the principles into my work with clients. Several have also made real progress in their healing, after years or even decades of believing that the best they could do was cope with and manage their symptoms. (I wrote a series of blog posts on the experience - some before and some after the Diagnosis. You can find those in the list of blog posts at the end of this one).
I began imagining a relationship with two "well" ones. What would it mean? What would become possible? What would open up for us?
Then came the Diagnosis and the dizzying tumble down the rabbit hole into Cancer-world. Suddenly he's the patient and I'm the caregiver. He is unsure and vulnerable and I am competent and on top of it all. It's hard to describe the feeling of whiplash in the relationship, when roles get so suddenly and profoundly redefined. I'd never gotten too involved in his health or self-care. In our 11 years together he's never been sick, rarely had pain, and never needed medical care. He works out religiously and takes good care of himself. Being strong is a central facet of his sense of self.
Medicine is a world I know how to navigate. I have a lot of knowledge and expertise. I speak the language. I'm familiar with the culture. I've been a patient for over 3 decades and a health coach/advocate for nearly a decade. (I do sometimes wonder how much comes from my actual experience and how much comes from all the medical TV shows and movies I watch. Since "ER" in the 1990s, I think I've watched every medical series on TV). I know how to get him what he needs. I know how to communicate with medical professionals, navigate insurance, read test results, ask the right questions. I know how to manage pain and medical side effects. I know how to cultivate a healing mindset, to work with placebo and nocebo effects. I understand nutrition and how the body's systems function and malfunction. Caring and advocating for him now feels gratifying and fills my heart with warmth, love, and connection. We've grown closer as he's allowed some vulnerability and I have taken some control.
And I can also see that it's going to be challenging. It's a completely new dynamic in our relationship. It's unfamiliar and can be awkward in moments. I'm nervous about what will happen as he starts to feel the effects of treatment - having no experience with or reference point for not feeling well, for being fatigued, for having to force himself to eat when he has no appetite, for dealing with pain and discomfort. We will have to feel our way through. His mindset is very strong - willpower, perseverance, and focus are innate strengths of his. And even so, this experience will challenge him in ways that neither of us has ever experienced. We will need to reach outward for support, which we've never done. We've taken care of each other, been a self-sufficient partnership, the two of us. There will be struggles - and there will be growth. We're both wired to grow from adversity. All I know is that six months from now, neither of us will be quite the same. What that road will look like remains to be seen.
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