How many of you have lost power in your house due to weather or other circumstances, and thought to yourself, “Oh my God, how am I going to survive without technology!” What many people don’t realize is that, for people with disabilities, that actually becomes reality! How will I actually be able to physically SURVIVE without power?!
Flashback to three months ago, when we experienced “The Great Blizzard Of October 2019” in northern New Jersey! As I lay in bed, on my phone, listening to the howling winds outside, suddenly, it happened! It all happened so fast. I saw the dreaded flicker of lights and I knew what was coming. The next thing I knew, my room was pitch black and my feeding machine started beeping. We had indefinitely lost power. As I stared at the ceiling in my now pitch black room, I slowly started feeling like I was sinking, almost as if I was drowning, when I realize that my bed had started to deflate! I have a hospital bed at home that has a pressurized mattress to prevent bed sores. These were just some of the challenges that I was going to be facing that day without power.
The first thing was that my nurse couldn’t come because all the roads were blocked and we were snowed in. Our heat wasn’t working so I was sitting in my room almost freezing to death because my heating blanket couldn’t be plugged in! My mom and I were about to start my machines when we realized that there is absolutely no way to do anything because, obviously, there’s no power! I couldn’t use my BiPAP machine, my Cough Assist, my nebulizer or anything of that sort!
Since we had recently moved and still weren’t finished unpacking, my dad went to the garage and in the dark, found the small generator we had which could power a lamp and one other thing. I needed it for my room but the only way to get it to work was if we plugged it in and brought the wire up the stairs from the deck. We had to leave the deck door open an inch which made our house even more frigid. Plus if the cold air gave me pneumonia, we couldn’t use any of my machines! For your average person, it’s hard to survive without your phone or technology, but imagine me, a girl who is bed bound, for about a week with no WiFi and no way to charge her electronics! What probably had to be the worst part of all, was that my wheelchair was completely dead from the day before and I had absolutely no way of charging it!
I was proud of myself though, because I didn’t go stir crazy! Our power was stuck like this for about a week and for about half of it, my entire family had to camp out in my room because I had to take up the generator. Once we got the generator to work, my brother and I am mostly colored all day! Oh, and about my parents, well they were bored out of their minds. Thankfully, I had a couple board games in my room. I mean, it wasn’t the most ideal family time, but it didn’t suck! We made the most of it, but it was extremely stressful. We had to call the fire department to come and park their truck in our driveway so they could give us power to charge my bipap and feeding machines enough to use for short periods of time! The generator ran out of gas and we couldn’t get out of our driveway to go buy gas. The Office of Emergency Management came and was nice enough to drop off a few gallons of gas.
So the next time you lose power and think your life is over because you can’t “survive” without technology, think of all the people who have it way worse! Not everyone can afford to have their homes connected to a generator and there are many that depend on life saving equipment and can’t actually “live” without power. Let’s work to make sure there are solutions available for those who need it and make sure you check on those who don’t have power and depend on machines for daily living!
About Sakina Shamsi: Sakina lives in New Jersey with her parents and brother. Although she has spinal muscular atrophy type II, Sakina lives a full and independent lifestyle. She is active in the disability community and also enjoys horseback riding, baking and crafting. Click here to learn more about Sakina.