From Dust to Sparkles

A story on disability and the incredible organization I work at, due to my disability

• Autobiographies

								
I’m a 31-year-old living with Nemaline Myopathy. Nemaline Myopathy, or Nemaline rod Myopathy as it’s fully known, is a rare form of muscular dystrophy (though some argue it’s not technically muscular dystrophy, but that’s a discussion for another time). This condition weakens muscles throughout the body, particularly affecting the face, neck, upper limbs, and often the respiratory muscles. It’s usually not progressive, but in more severe forms, it can be.

For me, I walked at two and a half years old, but after spinal surgery to correct a progressive curvature, I was never able to walk freely again. My brain, however, is completely unaffected by this condition. Some categorize me as having a severe level of NM, but I consider myself intermediate since I breathed on my own until I got pneumonia at five. Many with NM need breathing assistance shortly after birth. I also have a feeding tube. I’ve had it since I was one year old. Though now I am able to eat in small and sometimes a bit larger portions, I do still have tube feedings at night sometimes when I don’t eat enough.

A day in my life typically starts very early. I’ve always been an early riser, not sure why. My nurse sits me up, then I start my day with a nebulizer treatment and a chest PT vest that is strapped on and shakes me around to loosen up the secretions in my lungs that I’m not strong enough to cough up. That goes on for a half hour every day pretty much. After that, I am given all my morning meds by my feeding tube, crushed and mixed with water because it is easier than swallowing. I can technically swallow them if needed except the bigger pills—those I can just cut in half—but if I have a nurse that can put it through the tube, I prefer that option. Most of my meds now are antidepressants. I don’t take too many other meds, just maybe a cholesterol med because it runs high in my family genes. I don’t take any meds for Nemaline Myopathy itself.

After meds are done and over with, I change the feeding tube and trache gauges every day to clean ones. I do that step twice a day, morning and night. I then go to the bathroom and get dressed. Picking out my clothes for the day is usually a fun activity for me. I like to match the earrings to the outfit and the shoes, of course. From the bathroom, I am then transferred (lifted) to one of my electric chairs, either the portable one or heavy-duty one depending on my activities for that day. I then switch ventilators from the bedside one to the wheelchair one. I also have a portable suction machine that goes on the back of my chair at all times. The ventilator is an LTV1150, which is an upgrade from the LTV950, which was an upgrade from the LP10, which was a massive, heavy machine. I once traveled on a plane with that one year to camp but required extra room on the plane due to its size. The vent always comes with a minimum of 2 batteries. They are called sprint packs.

Nowadays, I’m so grateful to technology for advancing as much as it has! I could easily have been trapped in an iron lung, like people in the olden days, and not able to go anywhere! The rest of my day is pretty typical. I can do almost anything once I’m in the chair, and once I’m in my chair, I’m pretty independent. Sure, there’s the need for cutting up my food so I can eat or watching me in case I need suction, but that’s the easy part. I know all my care, thankfully. Some reading this may be laughing at me and saying, “Oh, that’s all? Really, Miriam?” I can argue that others have it way worse medically. Do I really need to go into an example? There are those that cannot get out of bed.

But this story isn’t just about Nemaline Myopathy. Despite my outward appearance, I have an incredibly full, fulfilling, enriched life. Many don’t know how to interact with me at first because they don’t understand my abilities. I’m sharing this story to raise awareness and show that being disabled isn’t a death sentence—it’s just another characteristic, like having brown eyes.

Coming to terms with being different from many of my friends has been a slow process. I grew up in regular schools, surrounded by typical peers. It’s hard to write about because, while I’m grateful for all I can do, there’s still frustration in being trapped in a limited body. My classmates are mostly married with kids now, while I’m still single. But I have something many people, even those without disabilities, don’t: a job. I’m incredibly fortunate to work at The Clubhouse, thanks to my high school principal Mrs. Wolmark and my amazing boss and now friend, Mrs. Sori Eisen. The Clubhouse provides after-school programming and respite for parents of special needs kids. The kids have all types of disabilities such as Down’s syndrome, autism, and other such things. It’s a much-needed service, especially here in California, where there’s nothing quite like it. Since I started, The Clubhouse has grown exponentially, with new buildings and a wheelchair-accessible bus that allows me to be included in the bus route.

I must say more about this bus. Up until now, I was taking Access or wheelchair-accessible Lyft or Uber (WAV) and spending so much money each day, making 4 trips in total per day. I work at The Clubhouse from 2 pm to 7 pm, but due to my nurses and caregivers’ schedule, I need to come home in the middle, then go back again for the next caregiver. Having this bus now is a huge deal for me in terms of being included and not having to arrange for my own transportation every time they decide to go somewhere—I just join them! I also don’t have to worry about trying to figure out the address, like has happened a few times in the past. I have the most awesome coworkers who I also love; Mrs. Batsheva Freeman and Mrs. Faigie Rosman!! So what do I do specifically? I’m a photographer, and I run the social media Instagram account. I also do some graphics designing flyers for events. I do a lot of random jobs. I don’t think I have an official title here, but that’s more than fine.

The Clubhouse is my second family. The kids there see me as a role model, and I treasure my friendships with them. Before The Clubhouse, I was extremely depressed and had a low sense of self-worth. Besides my physical challenges, I’ve struggled with severe depression and self-harm. Mental health is a tough topic, especially in the very orthodox Jewish community I grew up in. But The Clubhouse keeps me afloat. I’ve been through a lot, but Still, I Rise. Antidepressants have helped me understand what it’s like to enjoy life. I dream of moving into my own apartment and becoming more independent. While I’m grateful for how far I’ve come, I still struggle and want more—and that’s perfectly okay.

Right now, I’m currently attending Camp Clubhouse for 4 weeks. It’s a day camp from 10 am to 3pm daily, including Fridays minus Sundays. Currently, we are in the last week. It’s been an incredible 3.5 weeks so far. There are 3 more days left, so sad. It’s been packed with fun things. Though I’m not currently a staff member and am attending Camp Clubhouse as more or less a “camper,” we all know that undercover I’m really a staff member during the year. 

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