How to Make the Joy of Christmas Last All Year Long
As Christmas and the end of the year draw near, I’m reflecting on what 2021 has meant to me. If I look at the past year through a pessimistic lens, I could easily say, “Nothing has changed.” I’m still stuck at home because of the pandemic, and there’s still a severe nursing shortage.
But I can also look at 2021 through a much more positive lens, which captures the attention of my hopes and dreams. In early 2020, I never dreamed that by the end of the following year, I would have published over 20 columns at SMA News Today. For years, I struggled to find a platform that would publish my writings even once a year.
In 2020, I never dreamed I would regain some movement in my fingers and my neck, allowing me to hold my head up better. This improvement is thanks to Evrysdi (risdiplam), which was approved by the U.S. Food and Drug Administration for SMA patients last year.
In 2020, I never dreamed that I would participate in a huge effort to pass momentous legislation. Hundreds of people and I dug in, determined to get a $5.40 raise for private duty nurses (PDNs) in North Carolina. The adventure lasted all year. I was interviewed by the news twice, which in itself was a thrill ride. The effort also required me to keep in close contact with state legislators. I poured my heart and soul into numerous emails, explaining that the lives of those of us who depend on PDNs literally hung in the balance.
One thing about digging in for a cause — you better be mentally prepared for the long haul. The goal this spring was to get the raise attached to the overall state budget, originally due to pass on July 1. As always, the budget had to go through many revisions, delaying the final approval until just before Thanksgiving. I am not blaming the legislators for this delay, because that’s how politics work. What was worrisome was the possibility that, through all the revisions, the raise could be drastically cut, or taken out of the budget entirely. Thanks to some miracles and the empathy of policymakers, the raise eventually passed in full.
This was a sweet victory in more ways than one. Countless mighty advocates have tried to get the raise passed for years, only for the top of the summit to evade us. Who knew that 2021 would be the year it finally happened?
Now that the raise is definitely coming on Jan. 1, 2022, it’s time to move on to the next goal: educating the North Carolina nursing community about the increase in pay for home care, which makes it a more reasonable job choice. Even though home care still doesn’t pay as much as travel nursing, it can still be just as rewarding and fulfilling.
There’s always something, isn’t there? You finally solve one issue, only for the next year to usher in a whole new set of problems. This natural progression of life brings me to the heart of my message.
You will always have crucial problems to solve, but don’t forget about the obvious miracle in your life: You are here today, alive. I know many of us reserve our joy for Christmas Day, but the fact is, we don’t have to wait.
Instead of only focusing on life’s problems, try to find things to be happy about each day you’re on this earth. When you look for these gifts of joy, then every day really will be like Christmas!
One such gift I cherish is the knowledge that people love me. This love also comes from my savior, whose birth is celebrated on Christmas.
So be glad for that special, tingly feeling of joy you may experience on Christmas morning. Just remember that you have the power to keep it going all year long.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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