I enjoy writing for SMA News Today because it grants me a sense of freedom and independence. I basically have the ability to send out invitations for readers to visit the inner workings of my mind as someone with SMA. I have the freedom to select a column topic…
Ever since I can remember, I’ve been taught that I am a soldier in this war against SMA. My destiny is to help others fight it, too. Early on, people gave me gifts to help me remember my purpose. One person, inspired by my fight against an overwhelming opponent, gave…
A little while ago, I went from using one nursing agency to using three. The change allowed me to find enough nurses to sustain the care I need with spinal muscular atrophy (SMA), and it taught me an important lesson about when to ask for help…
Have you ever been in a deadly serious situation that you looked back on later with humor? Perhaps you’re doing your normal activities and suddenly slip. Or, maybe an object accidentally falls and smacks you in the head. Don’t get me wrong, a slip and a fall or a smack…
Have you ever looked back on the person you used to be and thought, “That was a lifetime ago!” When I think this way, I look at it from two different perspectives. On one hand, yes, my past self seems light-years away. On the other hand, that other me seems…
Have you ever looked at pictures of people on social media and wished that was you? The human race is made up of many different shades. At some point, though, we all turn green from envy. These feelings can greatly affect people with chronic illnesses and lead to an especially…
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…
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…
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