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March 21, 2021

Caretaking: Behind the Scenes of this Invisible Burdon

Photo by Andreas Wohlfahrt on Pexels.

When your spouse has a chronic disease and you add a newborn baby to the mix, the most unforeseen obstacles become your everyday life.

It was my thirty third birthday and my first child was one month old. Being the tail end of winter, I had rarely been out of the house, much less taken the baby for an excursion. This was the first day the sun showed itself in weeks and although it was still cold you could feel life renewing. My simple birthday request was to leave the house for a short while with the baby. I said, “Let’s go to the bookstore!” So, my husband and I prepared to take the baby out for her first adventure.

Despite having Multiple Sclerosis, my husband’s symptoms were mostly invisible and we could easily pretend (to ourselves and others) that he wasn’t sick—that he was “normal”. His vision was attacked first, 8 years earlier.  Although he had enough vision to get around and read with a magnifier, he was too blind to drive. His mobility was questionable with weak leg muscles and, at times, a loss of balance. I was very nervous about him carrying the baby. We were both determined that his disease wouldn’t keep our family from doing anything. Slowly, that reality meant that I would do everything and he was my assistant.

The time frame between feedings was limited, so I quickly bundled up the baby and got her situated in the car seat—an accomplishment for a new mother. I grabbed my purse, the car keys and nothing else. Inexperienced mothers think they know everything. I was determined not to be one of those mothers who carries around a 20 pound diaper bag with anything you might need in case of an apocalypse. Plus, we wouldn’t be gone long.  As the family chauffeur, I drove the three of us over to the bookstore.  I also had a stigma about lugging around a car seat carrier with a sleeping baby.  Why don’t people just carry their babies? Mine needs physical contact, so I just carried my featherweight baby in my arms. I left my purse in the car and gave the car keys to my husband so one hand would be free.

We weren’t the only people who wanted to get out of the house on that beautiful day. The store was very busy with people coming and going. I was so happy and relaxed. It was still cold outside but you could smell spring in the air. I proudly carried my beautiful new baby inside and started pursuing the books. Ah—the perfect birthday.

I started compiling a stack of books and noticed my husband wandered into another section of the store. A short time later I started to smell a foul odor. Uh oh. I didn’t bring the diaper bag—maybe that wasn’t the best decision. I tried to convince myself she’d be fine a bit longer. The smell became more pungent when I realized it wasn’t from her diaper after all.

There was a small corridor with one of each, a men’s and women’s restroom, and the smell was radiating from that area. Ugh.  Then I relocated to another section and also kept an eye out for my husband. He was nowhere to be found. At this point I started connecting the dots. You see, another one of his invisible symptoms was that he didn’t have the proper nerve sensation to give him ample warning when to use the restroom. No big deal—when the feeling came on he would quickly find a restroom. I assumed that’s what happened.

A line started forming near the restroom, but as time went on the odor became more and more repulsive. People left the line and others replaced them. Other men resorted to using the women’s room. A store attendant came through spraying air freshener. I tried to suppress my embarrassment and kept my distance. My tiny baby was starting to get extremely heavy. I kept setting down my pile of books and shifting her to the opposite arm. Sweat started forming, my body was throbbing from head to toe. Partially from nerves (When is he coming out? Is he okay?), partially from embarrassment (Will anyone know he’s with me?) partially because my arms were numb.

Finally, I decided it was time to check on him. The smell was so nauseating that the corridor was now vacated.  Still, I entered the passageway discreetly so no one would know we were together. I knocked on the door, held my breath and asked if he needed anything. He cracked open the door enough that I could see he was standing in the nude. You’ve heard about projectile vomiting? Apparently there is the equivalent for diarrhea. The scene behind him looked like the most disgusting gas station restroom you’ve ever seen, now multiply that by one thousand. His invisible symptoms were now very, very visible all over this small restroom. No explanation was needed. He was understandably distraught and mortified and curtly told me to go get him clean clothes. I assured him I’d be back as soon as I could and he handed me the car keys that were in his pocket. Now I was berating myself for not carrying a diaper bag with wet wipes (as if that could have helped the situation).

It’s hard to predict what you might do during a stressful event. For some strange reason, I was determined to purchase the books I had selected. Maybe I didn’t want anyone to know I was with him. Maybe I just wanted a moment of normalcy. Maybe I just couldn’t think clearly at that point. I’m still not sure. One thing I knew for sure is that if I didn’t get them now, I never would because I would never step foot in that bookstore again. Like a recurring dream, my conflicting feelings were back. Equal amounts of “I will do anything to help this person I love with a situation he has no control over” and “I don’t want this to be my life. I’m going to pretend it’s not my life.”

Shoot! I left my purse in the car. Holding back tears, I set the books on the counter and told the cashier I’d be right back. I went to the car and put the baby in the car seat carrier. What a relief I felt as I shook out my arms.  I re-entered the store lugging the carrier along with my purse and the car keys. Now I waited in line behind one person. My head was throbbing, my vision was blurred from the well of tears about to overflow, and my breasts were on fire and ready to explode with milk. The cash register was on the opposite side of the store from the restroom, but surprisingly the odor was still obscene and ripe.

I made small talk with the cashier just like it was a typical day. When I handed over my bank card my hand was shaking. I looked down at my hand. Oh my god. No way.  Please. I want to disappear. My hand was the source of the odor! The feces has been transferred from the car keys that had been at ground zero. Oh god, not just my hand, but my pocket, my purse and the car seat had all been contaminated.

I successfully made it out with my new books and my sweet, easy baby who never made a peep. Somehow, she must have taken this all in, because even today at age twelve she has compassion, empathy and maturity well beyond her years. I drove to the department store across the street, cleaned my hands, purchased a new set of clothes for my husband and two small towels.  In the parking lot, I sat in the car sobbing while I removed all of the packaging and tags from the clothes that now had droppings of my mucus and tears.

Then just like you do for a child in crisis, I pulled myself together and drove back to the bookstore. I blew my nose and wiped my eyes so my husband wouldn’t think this phased me. I held my head high when I calmly retrieved him from the bookstore. When he came back to the car I patted his leg, comforted him and made light of the situation. I gave him a pep talk and we laughed about it together. I teased him about being the one to get new clothes on my birthday.

This was the day I realized I should expend more energy learning how to cope with my challenges rather than pretending they didn’t exist. I’m glad I realized at age 33 a lesson that some never learn. There is no such thing as normal. Normal looks different to everyone. I needed to let people in on our secrets and I needed support. That day was not the first traumatic event I experienced as a caregiver and it definitely wasn’t the last. What sets that day apart from the rest was that I suddenly realized I had two people to take care of instead of one.

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