Hilary Lauren’s journey of living with transverse myelitis has helped her see how truly limited her relationships were before illness opened her eyes.
In “7 Unexpected Gifts I Received from My Dis-ease,” I wrote about how my diagnosis and gradual loss of “normal” function has, in many ways, enriched my life. With continued reflection, I realize that I have, by letting this illness open me up to the wonders around me, also allowed it to enrich the lives of others.
It Made Me a Better Mother
We all know that dishes and dust bunnies and laundry, laundry, laundry will always reaccumulate. I wonder now, why I was so afraid to unclench my grip from the chores and daily tedium of life? Why did it take such a major event to wake up and cherish these small, funny people who are my children?
Being forced to release ownership and obsession over minor things was not as hard as I thought it would be. My house is filled with much more laughter and silliness. I am so proud of all of my children and their individual ways they show caring, so impressed with their maturity to hang in there, to try to understand what happened to their bouncy, energetic,believing-she-can-tackle-any-task mother. They ricochet back from blows with cheerful banter, cry with me, and desire to spend time more time together. They surprise me with their devotion, confirming I’ve done alright, something I hadn’t been convinced of in moments of doubt.
It Made Me a Better Friend and Neighbor
When I saw someone in a wheelchair, I had kept my distance before this illness struck, because I thought doing so would keep me safe from disease and accident, similar to the way you bargain with yourself as a kid. If I make it up the stairs, running as fast as I can, before I reach a count of five, my mom and dad won’t get a divorce.
We all know, no precaution or superstition will keep you disease-free, or grant you immortality, but pain and death are hard truths to accept, and disability is their next door neighbor. Denial is pretty comfy sometimes. I went to the neurologist several days ago and was so grateful when people smiled at me, when fellow patients tried to engage me as if I’d brought worth into their world. Greetings and small talk meant instant acceptance of me as a person who is still whole despite obvious challenges, it confirmed they regarded me as someone on their level.
I think disabled people want to be smiled at, and I am going to try harder to do that. They might also anticipate a certain amount of neglect comes with the territory, which might be why so many stare at the floor, sensing their existence in a roomful of people is condemned to be solitary one.
A definite disconnect exists between how people feel and how they look. If you look good, you must feel good. Sometimes the strongest people come off as awesome, which actually might be the faith in themselves shining out from bleary eyes and battered bodies. They are so used to faking feeling well. It gets old telling people how shitty you feel. Racking up the pitiful stares.
I hate sharing that I am not working right now, worried people will lump me into the category of the fakers, those who pretend to be hurt, who sue when a store shelf gives them a splinter, who secretly want to eat ice cream out of the pint as they watch soaps. All. Day. Long. I don’t want that. I want to pull the cart like the work horse I am, and I still long to change the world, it’s just now, my strategy has to change. When my doctor tells me he believes me, he knows I hurt and am scared and confused, I cry and thank him through my tears. At least this illness is successfully irrigating my tear ducts! It feels unbelievably validating to learn people want to help you get better. Better, when they don’t realize the gift they’ve offered, the positivity required to start healing.
It Made Me a Better Lover
I used to wish we would find our way to a closer dynamic, the “Otter” (which is my love name for my significant other) and me. We might be near each other in proximity, snuggling on the couch, in bed, but I remained behind a shield, aware I was holding back, unsure how to let go. Since I have been forced to hand off the tasks I normally manage as a mother, partner and worker, I’ve had no choice but to be okay with the end results.
I’m comfortable asking for help now because I have to do it. Me, who never requested a cent or favor from anyone. It needed to happen. My Iraqi war veteran, who had a habit of urging me to hurry up, who was infamous for measuring departure times with a countdown he chanted as he walked through the house, who hustled as he went about his day, has slowed down.
When I worried if I would ever keep pace with him again, he replied it was probably time for him to take it down a notch. So I cried harder as he pulled me into a deeper embrace, his voice low and reassuring. He has posed terrible haunting questions about his future with me and still he stays, never running from his answers or hating himself for making the inquiries. We have stopped trying to fix our pasts and have shifted our focus to our one-of-a-kind coupledom. All it took was a disease.
Photo: Flickr/Joshua Zader