The Olympic Games in Tokyo are happening right now, which makes me think about how those of us with SMA are athletes in our own special way. How do we win against the opposing team of our symptoms? We must have high amounts of endurance, the will to overcome…
Soaring With Hope — Ari Anderson
Ari Anderson resides in Charlotte, North Carolina, and was diagnosed with SMA type I at 6 months old in 1982. At the time, the prognosis was almost hopeless. Today’s medical therapies have changed the prognosis to hopeful. Yet, the rest of society has a long way to catch up in how they see people with SMA. Through his column, “Soaring With Hope,” Ari shares how he changes views through advocacy, innovative technology, and determination. He inspires hope by helping others rise above their hardships. No matter who you are, through his conversational style of writing, you may find that you have experienced the same feelings and emotions throughout your life as Ari has!
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One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
So you’ve badly hurt another person’s feelings, and the guilt they’re making you feel is burning hot. You know how that goes, right? Once, a friend was so steaming mad about a mistake I made that you could cut the atmosphere’s tension with a knife. I…
Sometimes people exclaim, “I never thought I would be doing this a year ago,” to negatively describe an experience. For example, asking for extra help to survive may cause some to think they are stooping to a new and shameful low. Even with all the help I’ve needed my whole…
Over the years, I’ve thought, “I wish I didn’t have all of these responsibilities and could just have fun all of the time. Living with SMA provides enough pressure that I didn’t ask for!” Growing up, I would frequently hear, “Go study for those two tests you have at the…
Have you ever noticed that people are similar to countries, and vice versa? Everyone has their own exports (products or services we produce) and imports (products or services we buy, such as food). Two or more individuals can become like allied nations when a friendship forms and they begin to…
One of the most extraordinary things about life is its ability to change the person we used to be into something completely new. We can’t always choose what befalls us in life, yet we do have a responsibility to choose whether we’re changed for the better or for…
We live in an age of rumors and widespread gossip. Many people seem to be mudslinging, and we’re all covered in it. Gossip didn’t start with the rise of social media, which is just a new medium through which it can slowly drip into our…
In my previous column, I shared how sometimes our advocates come from the unlikeliest of places. Yes, even politicians, who some believe are the embodiment of greed and corruption, can make an enormous difference in our lives. The mystery senator I spoke of…
It can be annoying when you receive devastating news, and someone naively says, “When one door closes, another one opens!” As someone who has received plenty of bad news, there is some truth to this statement, no matter how cliché it sounds. In the ’90s, I received the devastating news…
To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…
Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes it is difficult to know how our actions may affect the lives of other people. For those of us with…
To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…
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