When Loss Is Expected, How Do We Cope?
It is hard to watch the decline in real time. It happens before my very eyes. Like “Groundhog Day,” I wake, I try, and I do.
I persevere because that is who I am. I push past the chaos in my body. I don’t see every new pain as a reason to worry. I don’t find each fall a cause for concern. But then it happens: A seismic shift occurs, and the progressive nature of my disease is front and center.
I don’t sweat the small quakes in my life. I expect grief and loss to happen. Perhaps I am too nonchalant, but I can’t afford to fixate on every new ache, pain, or phenomenon. They are inevitable. I gloss over loss to cope with this disease. If I don’t create space for the myriad hurts, perhaps they won’t exist.
Pro tip: This does not work, and they do exist. Yet, I do this as a way to cope with life with multiple sclerosis. It has nothing to do with intellect or emotional health. It has everything to do with a desire to be free. I want to live free from what my disease dictates. I long to work more, play more, sleep more, travel more, exercise more, learn more, and love more. I long to hurt less, resent less, cry less, fall less, argue less, lie awake less, medicate less, and isolate less.
The tragedy of chronic disease is that loss becomes white noise. I choose to push past what would be a roadblock for most. I step over the cracks as they appear. I have no illusions about their existence. But I do not stop and breathe life into them. Instead, I improvise, adapt, and move forward.
Secondary progressive multiple sclerosis is a degenerative disease. It is full of unknowns and not for the weak of heart. I navigate through it as these earthquakes continue. I feel each one. However, I move through them with intention. I move through them with renewal and a will to survive.
In the absence of a cure, I give myself the grace to live my best life.
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Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Ben Hofmeister
"I have no illusions about their existence."
"However, I move through them with intention."
Powerful stuff Jen,.........powerful.
I'm speechless, (which is very rare for me).
Ben
Jennifer Powell
Ben,
Thank you for being such a loyal and wonderful reader. Your feedback is so very appreciated. May we both cope through these changing times knowing we have the support of one another.
warmly,
Jenn
Linda Pahl
Wow
It tells the moment that is always hard to articulate.. Great fantastic words thank you
Steve
Thanks Jennifer. Your succinct description of coping with progressive MS is very eloquent and also very true.
Phil Kirschbaum
Nicely written Jen. Nice to hear a voice that is speaking of the painful losses (and pain) of SPMS, in balance with what’s going right in her life. I attended the Take Charge workshop a couple of weeks ago and found it to be depressingly tilted toward what’s going wrong. The lack of humor and acceptance took some of the power away from the excellent resources available to participants in the workshop. Thanks for striking the right balance
Maggie O'Brien
Having been diagnosed for over 30 years and recently being changed to SPMS, I appreciate Jenn's attitude that she brings to the challenges of the SPMS label. I hope I am as clear-headed as she is as time goes on.
Jennifer (Jenn) Powell
Maggie,
Thank you so much for your kind comment. Attitude has proven helpful in combatting many sobering facets of progression. I am careful to grant myself space to grieve the losses too. Striking a balance is a continuum, but one that is very worthwhile.
Warmly,
Jenn
Jennifer Powell
Linda,
Thank you so much for your kind comment. There are many aspects of MS that are difficult to convey. I am thankful I can help articulate this one.
Warmly,
Jenn
Jennifer Powell
Steve,
Thank you for taking the time to leave such a kind comment. I am thankful this resonated and spoke to you.
Warmly,
Jenn
Jennifer Powell
Phil,
Thank you so much for taking the time to leave such a thoughtful reply.
Thriving with MS requires we strike a balance. Too often, the importance of doing this is not highlighted in some support/resource groups. My own experience with many groups has been similar. There is no denying the physical and emotional pain involved in having MS. My own self deprecating humor has helped me create space for both.
Your perspective may helpTake Charge incorporate more conducive messaging.
Again, thank you for sharing your thoughts.
Warmly,
Jenn