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 the worse. We literally have this choice each day.
From my experience, I sometimes get aggravated when I think, “Why do I have to fight for my services every single spring and summer when the state budget comes up?”
I start feeling even more down when I remember a comment a friend made years ago. She very innocently said, “If you need these services, why can’t they [meaning policymakers] just let you have them without questioning it?”
I know deep down it was a harmless question. Like most people, she didn’t know that the life of an advocate isn’t that simple, although I wish it were!
The complicated truth is that I must continuously provide strong evidence that providing care for me at home is less expensive than providing it in the hospital. It’s no small task to convey this message each year to as many state legislators and other policymakers as possible.
I understand it, but most people don’t. This sometimes makes me think, “Why can’t people understand how hard I work and what I go through?” These types of thoughts can easily lead me down a dark path.
Here is another example. Last summer, one of my nurses left my case after four years. Nurses leaving is par for the course when you receive home healthcare. Unfortunately, all I could think about was, “I just recently gave her more regular shifts on my schedule than she had before! Now she’s leaving me?”
I knew in my head she was leaving for a good reason: to take care of COVID-19 patients. But I couldn’t think about that in my heart.
When I ponder these things, I can choose to focus only on myself and become a bitter person. Or I can choose to look at the wider picture. For me, the wider picture means becoming more of a generous and giving person; in short, more of the person that God wants me to be.
Maybe the bitter side of my personality is right. I am being singled out by having all of these problems that some perfectly healthy people have never even heard of. Yet, I’m also being singled out in a good way. How many people get to build meaningful friendships with senators and advance policies for rare disease communities?
In 2011, after a particularly hard but successful year of protecting Medicaid services, a mother approached me. She was in tears and wanted to thank me for saving her son’s nursing services. By advocating for myself, I had protected others.
This made me feel like a comic book superhero, like I could accomplish anything! It was a lesson about how much of a difference it makes for me to give my time and efforts to the community.
Regarding the nurse that left my case to take care of COVID-19 patients, they probably needed her help a lot more than I did. We all have to make sacrifices during this pandemic, and people deserve our generosity.
I’m never going to change back into the person I used to be — completely positive all of the time. Life is about changing into something totally new and even better, as the Bible says in the Book of Isaiah.
I still frequently struggle with the negative thoughts I just told you about. I’m proof that if you’re feeling particularly bitter right now, it’s not too late to change tomorrow.
Every one of our thoughts can point us in the right or wrong direction. If my columns promote thoughts in you that point you in the right direction, then I’ve done my job!
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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