Coping with grief and the day-to-day life of LGMD

People living with a chronic illness, including me, commonly explore how we deal with grief, which is the subject of much theory and research. I’ve thought deeply about how living with limb-girdle muscular dystrophy (LGMD) can be seen through the familiar Kübler-Ross model of the grief cycle, with its stages of denial, anger, bargaining, depression, and acceptance.

These stages can and do overlap, and sometimes they’re missed, skipped, or not felt at all. I’ve always thought of this model as a loose guide and not a true road map.

Recently, while reading Ben Hoffmeister’s column on grief in Multiple Sclerosis News Today, I was introduced to an alternate model of grief, called the dual process model. Always one to click and further my knowledge, I decided to investigate, compare, and contrast the two theories.

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The dual process model, which can be used for learning and reasoning, has also been applied to understanding how people cope with grief. It sees grief as nonlinear and suggests that we process it in a couple of primary ways. Although dual process and Kübler-Ross grief models tend to focus on death and dying, a lot of their ideas can be applied to people living with LGMD or other illnesses that involve loss.

In the dual process model, we oscillate between phases of loss-oriented thinking, when we grieve and yearn, and restorative-oriented thinking, when we seek to get better. We do these things in the middle of daily events, such as work, eating, paying bills, and more.

Understanding my losses

This model speaks to me in a way that the five Kübler-Ross phases do not. As my LGMD has progressed, I’ve had to oscillate in several ways that an able-bodied person doesn’t. Certainly I’ve experienced the stress of loss-oriented grief. But I’ve also had restoration-oriented stressors, which are secondary to the loss itself.

After losing walking or another ability, for instance, I need to reimagine my world and how I interact with it. In other losses, such as an ability to use the toilet alone, the same thing applies, but I also need to think about asking for help, installing equipment in my home, or worrying about how I’ll handle the situation if I’m not home.

These examples have me in between loss-oriented thinking (I can’t do this activity anymore) and restorative thinking (how will I adapt to this change?).

A chief quality of processing the grief of a chronic illness, no matter which model is most helpful for you, is the fact that each physical loss can feel like a new diagnosis all over again, as well as the beginning of thoughts, oscillations, and stages. Life goes on along with the repeated grief throughout the years. The wild cards are time and wisdom.

I’ve always been a positive person, and though that doesn’t solve all of the problems of living with muscular dystrophy any better than a magic wand, time and loss don’t have to be looked at as enemies. Time helps us garner wisdom.

As I age, I’ve been losing abilities such as those above while also losing the general independence I had when I was younger. On the other hand, I feel that I’ve grown into the changes that have taken place. Much like getting comfortable in an old pair of shoes, the wisdom I’ve gained through time has taught me that my muscular dystrophy losses will be handled, because the disease has taught me patience and perseverance while training my brain to adapt to the situation as it unfolds.

That includes handling grief side by side with living day to day. Maybe I’ll take up juggling. Just kidding. Sort of.

Note: Muscular Dystrophy 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.