The feeling of guilt calls to mind the image of a patchwork quilt. Unlike a blanket which is one piece and often uniform in both color and pattern, the quilt is a blend of patches. The patches are all different, each varying in size and color. Some are larger while others are smaller and simply seem to connect the others. Some dominate the theme with loud colors and others are muted in the background. The feeling of guilt can be overwhelming and hard to relinquish, especially for a parent with young-onset Parkinson’s.
There is no reason for the guilt. It’s not rational thinking. My Parkinson’s was not the result of a poor decision or the consequence of a lifestyle choice. I did not choose Parkinson’s. It chose me. Was it genetic? Was it environmental? Maybe it was just bad luck. I may never know the answer but I do know it wasn’t my fault. That said, despite my best efforts, at times the guilt remains. However, it’s time to let it go entirely, or at least change the pattern and make a new quilt.
My kids didn’t sign up for this.
Post-diagnosis, I constantly worried about my Parkinson’s effect on my husband and three sons, concerned by the burden it may place on them in the future. The “burden on my family” patch was my guilt quilt’s dominant pattern. When you get married, you take vows and you stand by your spouse — for better or worse, in sickness and health. It’s part of the deal. You expect challenges.
However, your kids are a different story. As a parent, you spend your entire life protecting your child. What happens when you are given a life-changing diagnosis? How do you protect them from the invisible creeper that is slowly altering the patchwork of your life?
For me, the answer is “you can’t.” Life has changed over the last five years. I have gained a better understanding of how my boys make an effort to protect me. While that may be part of my husband’s job, protecting me is not in their job description. That’s not the way it is supposed to be, but that’s the way it is.
One would think that would make the guilt worse but it doesn’t. It changes the pattern. The patch is smaller and the color is fading. My relationships with all my boys have changed. I have come to appreciate each one of them for their efforts to support me. I’m in the fight of my life and they each have a unique role in it.
The new quilt.
My favorite banter has become, “Mom, are you good?”
“Yes, I’m good.”
It is that simple. I’m good. They’re good. “We’re good.” A new patch, a new pattern, and a new quilt.
To sum it up, my youngest son said, “If you would have told me five years ago that you would be doing what you are doing now, I would have called you crazy.”
As parents with young-onset Parkinson’s, we have a long life ahead of us. Worry comes with the job, but guilt does not. The time has come for us to design a new pattern and make a new quilt. We design the patches; Parkinson’s doesn’t.
Note: Parkinson’s 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 another 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 Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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