From Impossible to Success: A Bi-level Ventilation Journey

"I can’t tell you what changed this time -- it could have been the fact that I am now 24 and not a stubborn teenager, finding a mask that works for me, my recent concerns about my physical health, or all of the above."  - Sam Jacobson

My name is Sam Jacobson, and I live in northern Illinois. I am a 24-year-old somewhat recent graduate, trying to navigate the world while living with a neuromuscular condition called Nemaline Myopathy, a form of Congenital Myopathy (CM). 
 
I have relatively mild CM, so much so that some people aren’t sure that I have a disability. My health was pretty stable until age 13, when a growth spurt resulted in rapid-onset, severe scoliosis, a sideways curvature of the spine. Within a month or so of the diagnosis, I underwent spinal fusion surgery to correct my scoliosis. I grew three inches overnight! I now stand at a whopping 4 feet and 9 inches. The immediate aftermath of the operation was difficult, and I experienced a partial lung collapse (atelectasis) due to the impact of anesthesia on my weak lungs. The complications left me in the ICU for about one week, and alerted my team of specialists to address my respiratory weakness.
 
Until somewhat recently, I desperately wanted to appear ‘normal’ and vehemently denied that I needed certain medical treatments (what I call internalized ableism). So, when my pulmonary specialist ordered a sleep study and told me I would probably need to start using a BiPAP machine when I was 14, I was horrified. I smiled and nodded along to what he was telling me, all while my stubborn 14-year-old brain knew I was not going to be wearing that huge mask to sleep. How would I explain this to my middle school peers? How would I attend sleepovers? Would I have to bring it with me everywhere? 

I brought the thing home and looked at it with disgust. It didn’t work for me. I swore I tried to make it work, but every night the mask would leak and pockets of air would hit me in the eye, or would make hissing noises that prevented me from falling asleep. And, of course, I used this as an excuse to deem the thing “impossible.” Instead of going back to my physician, trying a new mask, different pressures, or anything, I threw it in my closet and closed the doors. I was done with it. 

The answers to how long I’ve needed assisted ventilation and how long I’ve actually used it are quite different. As stated, it took me several tries to make it work. There are about 10 years between my first try and now. 
 
Since getting a new bi-level breathing machine and mask just last October, I’ve not gone a night without it. I can’t tell you what changed this time -- it could have been the fact that I am now 24 and not a stubborn teenager, finding a mask that works for me, my recent concerns about my physical health, or all of the above. I will not lie and say that using my BiPAP machine and keeping up with its maintenance are always my favorite things in the world. I used to be a big fan of the accidental nap, which is harder to do now that I have to set up my BiPAP and wear it every time I sleep. I groan when I pack up to spend the weekend at my boyfriend’s house when I remember that I have to pack a cumbersome machine, plus a container of distilled water, mask wipes, and any of its other accessories. However, since finding what worked for me, I experience fewer headaches, less daytime tiredness, and an overall increase in my quality of life. 
 
In 2019 I graduated with a Bachelor of Arts from a tiny school in Illinois called Knox College, where I majored in Philosophy. Right now, I am finding my way and considering the many paths in front of me. I am working from home full-time, considering moving to Milwaukee, WI with a few friends, and thinking about the potential of graduate school to further my education. Since addressing my respiratory concerns, I’ve felt a renewed sense of confidence in my ability to tackle these endeavors such as finding a fulfilling career path and living independently.

As a journalist in college, I had the privilege of starting a campus-wide conversation about disability and the inaccessibility of our campus. I feel strongly about meeting and connecting with other disabled people, especially youth, who are struggling to accept themselves and their disabilities. I think it’s important for young disabled people to see others in the world who look like them, have similar experiences as them, and who understand the trials and tribulations that come with having a disability. I want to help disabled youth navigate the social aspects being disabled, such as how to date, how to recognize when someone is treating them negatively because of the disability, and how to find a career while disabled. 

Editor's Note: 
Each individual who allows Breathe with MD, Inc. to publish their story on this page in 2021 will be entered into a drawing at the end of the year to win a $100 Amazon gift card!  So, what is your story?  Start the process of telling us at https://breathewithmd.org/storyform.html or send an email to Info@breathewithmd.org.  ​