The house smelled like Christmas morning as the scent of Blueberry Cream Cheese French Toast Bake poured out of the oven. For the 23 years we’d been together, we usually only had this meal once a year on Christmas because it’s not exactly healthy, but lately, we’d been having it more often.
“Another breakfast dessert for dinner?” my husband asked, looking down at his belly and sounding slightly annoyed.
For the last couple of months, I had been privately experiencing a significant weakness that seemed only to be affecting my muscles used to eat. Chewing any type of vegetable, grain, or almost everything else from my normal diet ranged from exhausting to impossible. Swallowing became terrifying because my muscles weren’t reliably controlling the direction the food would go. I never knew if the food would end up in my stomach or my lungs. I didn’t mention it to anyone because it was normal for me to occasionally have random unusual weaknesses (sometimes intense) for a while that eventually went away, becoming a nonissue and leaving me at my baseline again. I was certain that’s what would happen this time too.
In the meantime, to survive this episode without starving or making it into a big deal to anyone—including myself—I planned meals that I found physically easier to eat but, unfortunately, were all completely unhealthy. In some magical but also terrible way, the unhealthy fats, carbs, high sodium, sugar, and processed mystery ingredients somehow made everything kind of stick together, making eating less of a battle. It was easier for me to control the chewing and swallowing with the consistencies these foods created. It seemed like the more unhealthy the food was, the easier it was to eat.
I wasn’t used to this kind of eating, and it was taking its toll on my body and mind. I felt tired, forgetful, heavy, sluggish, and overall gross most of the time. I also felt guilty and irresponsible because I had always been an avid believer in eating healthy as a way to appreciate and respect the body and health I did have, and I wasn’t living that out. But the effort it now took to eat, which left me exhausted after any but the easiest meals, made it impossible for me to consume my usual diet, which was full of whole foods, whole grains, nuts, seeds, and many other things that are physically challenging to eat.
I thought this episode would resolve any day, but the weeks had turned to months, and I still hadn’t told my husband. I was getting silverware out of the drawer and waiting for the oven timer to go off while my husband sat at the kitchen table looking through the mail. He was quieter than usual, and I sensed a slight tension between us. I knew he was unhappy about my meal choices lately, and I figured he was trying to decide when to bring it up.
“What’s up? Why are we eating this way?” he asked point-blank.
I could already feel the ache in my throat just thinking about having this conversation. I preferred to handle things on my own and keep my physical woes to myself, to deal with them on my own timeline. Letting other people in seemed to bring more energy and unanswerable questions and create more anxiety for me.
“I can’t eat the way we used to right now,” I said with a minimizing shrug. “It’s no big deal. I’m sure it will be fine again in a week or two.”
I knew progressive diseases did what they did and progressed, but I was still pretty sure this would go away. I was convinced that, since it happened so fast and so dramatically, it couldn’t be a true progression. I thought it was nothing more than some strange SMA glitch because, in the past when my SMA would go through a progression, it happened so slowly and subtly that I didn’t even notice it was happening. The losses were gradual, not extreme like this was. Like when I lost the ability to easily lift my arm up on my armrest. Slowly it changed from something I easily did without even thinking about it to being a struggle. With effort, I could still do it, so no one really noticed except me. Progressions like this had always been gradual little things that didn’t negatively impact my life enough to matter that much. But this one was different. It was impacting us both.
We sat in silence for a minute as he kicked around my response in his head. “What’s the problem?” he asked.
I had feared this moment basically since we met. The moment when I would have to admit that I was physically weaker to the point of needing to change our lives from the norm—the moment when the inevitable progressions came that didn’t go away and required us to live differently. I knew when he decided to marry me that he agreed to deal with this, but it’s a different story when it’s actually happening. Would he choose me despite all the adapting, adjusting, and constant pivoting that would eventually become our reality?
“I’m having a new intense weakness that seems to be only affecting my eating muscles,” I said with a shaky voice, “I don’t know exactly what’s happening. I’ve never lost ability this aggressively. Logically it seems like a major progression, but I don’t think SMA progresses like this.”
Even though I feared the outcome, I felt a huge weight lift off of me sharing this with him. Trying to hide this was almost as stressful as the problem itself.
He nodded, thinking about this. “Let’s focus on where our power is and go from there. If this is here to stay, we’ll figure it out, but we’re not going to keep eating this way,” he said in his usual confident way, which was comforting because it always made me feel like we could somehow control things that were, in reality, uncontrollable.
He suggested we fill our kitchen with tools that pulverize food and just make the leap now, but I wasn’t ready for that. I needed more time and less pressure to determine if this change was permanent. We agreed that for the most part, we would eat separate meals over the next month (he would return to eating healthy food, and I would eat what I could), and if this weakness didn’t resolve within that month, we would figure out a solution for me to be able to eat healthy again.
Throughout the next few weeks, I occasionally felt like I was getting my ability to eat normally back, and then it would disappear again. I was stuck in a cycle of extreme relief and happiness when my strength seemed to be returning and then extreme disappointment when I realized it was gone again. I grieved for my muscles as I felt them getting weaker and weaker as they worked in their on-again-off-again rhythm for weeks. This is when I knew this progression was real and here to stay. Even though this was expected, natural, and unavoidable, I still felt blindsided.
At first, I was dead set against using a blender for anything, not even the trendy smoothies the fitness experts do. Needing to blend meant I had progressed, and although part of me understood that’s what was happening, a bigger part of me was still in denial. Maybe it was the grief of the loss, or maybe it was just me being stubborn, but I was going to fight this and make it harder on myself than I had to, no matter how it affected my health, because I thought I could figure it out without needing to use a blender and that I’d be fine.
I spent countless hours researching recipes I thought met our health standards and would be easy enough for me to eat. I was surprised to find that many of the plant-based and vegetarian diet websites regularly used blenders and food processors in their recipes. Because of my quiet prejudice towards what using these tools meant in my life, I never considered using those tools before this new weakness arrived. Why would anyone use this stuff if they didn’t have to? I thought. I’ll admit that most of the recipes looked delicious, and the tools did really make them look easy to make, but I still wasn’t ready to take this step.
Since I wasn’t using a blender or food processor, most of the recipes I tried didn’t work out like they were supposed to, according to the directions. The ingredients weren’t in the proper form for the recipe to be successful. I couldn’t get the textures right. Vegetables stayed too tough even when steamed, grains were too grainy to swallow, and everything was dry and falling apart. I struggled to eat, and too often I dealt with it by simply not eating much at all.
One night after weeks of struggling to eat, I was trying to focus on a work project, but I couldn’t because my stomach was burning and growling, and I was uncomfortably shaky from lack of food. I was starving, and I felt like a horribly neglectful friend to my body. Suddenly, I couldn’t take it anymore. “I think I’m going to die of slow starvation,” I cried hysterically to my husband. “Not enough of what I’m trying is working.”
He listened to my meltdown with complete compassion as he smashed a banana into some plain Greek yogurt for me to eat. I wondered how long I could survive just eating this meal. I decided I would start seriously considering using a Vitamix, although I still had huge reservations about it.
The next day I was shocked when my husband came home with a Vitamix, a food processor, an immersion blender, and a beautiful salad he bought at the co-op deli that had always been one of my favorites there.
“Why did you buy all that?” I asked defensively. “I am still undecided about using a blender. I told you I was considering it, not that I was ready.”
“This is how we solve this problem,” he said. “This is survival. Our power is in these machines, and you’re not starving on my watch.” He was half joking and half desperate.
“Whatever,” I said in the brattiest tone I could muster. “I’m probably not going to use any of them.”
He pointed out that the physical side of this problem was simple to fix with the right tools, which I now had. He also mentioned that he didn’t think I was being rational or smart in how I was handling this. “The real problem is in your head,” he said. “Get your head around whatever you can’t accept about blending, and let’s move forward.” He took a bite of the beautiful salad, chewed it up, and spit the bite out in his hand. He held the beautiful, perfect-looking salad in one hand and the chewed-up, gross-looking bite in his other hand. He kept comparing them for me side-by-side while saying, “This is this. It’s one and the same. This is this,” over and over until I finally understood. Everything everyone eats is blended. Whether it’s chew-blended or machine-blended, it’s all blended, and it all looks gross when it is.
His demonstration was a little gross, but it was also effective. First, it helped me get it that blending food is not a big deal. It’s basically what our bodies naturally do themselves so we can survive. Second, it silenced the lies I was letting take root in my heart that my husband might decide not to stick around through my progressions. I didn’t worry about that anymore. Ever. After having the switch of acceptance flip, I felt ridiculous for what I had been putting myself through. I had been feeling guilty and ashamed both about my body’s inability to perform normally and about doubting the commitment of my husband. I knew my perspective was changed. I was looking forward to getting back to treating my whole being well again. I felt a new energy of hope ignite in me. I knew things were going to be ok and even felt a slight inkling that they might be better than they used to be.
He washed the Vitamix, poured the rest of the beautiful salad into it, added ice, and blended it into a not-so-beautiful bright green smoothie. We drank it. It was delicious. I was getting lots of nutrients with minimal effort. I immediately started feeling better. God! That’s magical! I thought.
That night he made a lentil, chickpea, and cheddar burger recipe that called for using a food processor and then topped the burgers with a homemade hummus that he made with the immersion blender. That both of these “normal” recipes called for the use of these tools reaffirmed in my mind that this new step was not a big deal. Dinner was so good! I could easily eat it, and with every bite, I felt life coming back into my body. I can’t put into words the amount of relief I felt. I was excited and hopeful about the possibilities this newfound freedom could give me.
Because of using the blending tools, we were able to take our nutrition to another level, trying new recipes that I would never have attempted before because I didn’t think I’d be able to physically eat them. In this moment, I realized that this progression hadn’t been so sudden after all. I had been on autopilot, compensating for years without even noticing it.
Like so many difficult times, this one led me to a better place. Once I stopped dwelling on what I couldn’t eat anymore and stopped depriving my body of the nutrients it needed to operate at its fullest potential, I was able to shift my focus to learning what I could eat. Eventually, this progression settled down. After going through an adjustment period of learning how to swallow with my new level of strength, I felt comfortable eating again as long as the food was prepared how I needed it to be.
With much trial and error, I now know how to prepare many healthy meals that are easy to eat. Everything I want to eat but can’t successfully modify, I blend.
Even with SMA, my body is a gift, and I believe it’s my responsibility to take excellent care of it. My body allows me to be here to do whatever I’m supposed to do, so I might as well help it out and take care of it. The actions I take every day towards respecting my body give me a self-esteem boost that carries over into every area of my life. Using the Vitamix and other tools put me back into an upward trajectory. They allowed me to take back control and live out my appreciation for my health and respect for my body.
In the beginning, I fought the Vitamix so stubbornly. Now I can’t imagine my life without this life-giving machine. It has empowered me to live my life how I believe I should be. My SMA will keep progressing and throwing difficulties at me for as long as I’m alive. But it brings me peace of mind to know that, if the day comes that I can’t swallow at all and I have to get a g-tube, I can still use my Vitamix to eat the way I want to and keep my body operating at its fullest potential.
Even though the Vitamix provides me with countless possibilities for healthy eating, I still look forward to having our not-so-healthy Blueberry Cream Cheese French Toast Bake on Christmas morning, which I’m still able to eat, and for that, I am grateful.