View From My Wheelchair: Weighing Your Words




Seeing an aquaintance, I smile.  We have both been busy and have not had the opportunity to hug.  I am glad to see her.  She looks great.

“I like your haircut,” I say.  “It looks cute on you.”

“You need to stop losing weight,” she replies and touches my cheek.  “You don’t want to lose too much weight.  Your face will get too thin.”

“Is that a compliment?  Because I feel great.”

“Well, just stop losing weight because you don’t want to lose more.”

For most of my life, I was thin.  In fact, when I was 16 years old, I went on a weight-gaining regime.  With the research available at the time, I tried a 3,000 calorie/day diet.  It was crazy – peanut butter sandwiches and strawberry sundaes prevailed.  The result: a rash from too many strawberries and no significant weight gain.

After the failed experiment in trying to gain weight, I resigned myself to being angular, lanky, and thin.  As I matured, my metabolism slowed down, and I filled out.  Eventually, in my middle years, my weight was within a healthy range.

Muscular dystrophy changed everything, and the pendulum swung in the opposite direction. Even with a 1,300 calorie/day diet and regular exercise, I gained more than 20 pounds in two years.  I knew that my disease was making mush out of my muscles.  So, I resigned myself to the weight gain while I still adhered to counting calories.

Noticing the toll on my energy and mobility with each pound gained, I struggled to lift myself and walk short distances.  A new cycle was formed: less mobility – weight gain – fewer calories burned – weight gain – less energy – weight gain.

Then, one day, I decided to seek the advice of my friend, Beth, who adheres to an anti-inflammatory, gluten-free diet.  My motivation had nothing to do with weight.  Even though I was already adhering to a healthier food approach, I was interested in the gluten-free aspects of her lifestyle.  Armed with experience and knowledge, she filled me with delicious bites of information.  Venturing into the world of glycemic indices, food additives, and alternatives to refined sugar, I discovered new food combinations that are beneficial and nutritional.  I am glad that I decided to ask her for help.  My friend has been instrumental in guiding me on my personal journey to a new lifestyle and has been my recipe guru.

Quite the opposite of my failed experiments with calorie counting, the switch in my approach to my food intake has had positive results.  I feel better.  Just recently, I painted for two hours.  May not sound like much to you, but I was down to painting for 30 minutes at a time.  Even though my energy is still low, I do not feel fatigued all day long.

Another gain from the change in my diet is that I have lost 23 pounds in seven months.  Along with the nutritional benefits to my body, I am convinced that my weight loss is contributing to my increased energy levels.

I am happy.  More energy, less weight to lift, and feeling productive have all given me a boost.  The quality of my life has improved.

The encounter, I described at the beginning, with my acquaintance is not an isolated event.  Startingly, people feel free to make negative comments on my weight loss.  What gives?  According to my doctor, I am within the ideal weight range for my age, height, and gender.  Nevertheless, rather than complimenting me on losing weight, some people feel the compulsion to complain about it.  Funny, they don’t tell me I have lost too much weight; they tell me I might lose too much.  How do they know?  Do they realize that what they say hurts me?

As a disAbled person, I am forced to live in a world of neurotypical patterns and ableist attitudes.  Every day is a struggle.  Speaking for everyone who is facing tribulations: We are wounded warriors.  Please restrain from offering unsolicited advice on what we need to do or do not need to do.  The old adage: if you can’t say something nice, don’t say anything at all should be your mantra when engaging with a disAbled person.  Positive words are welcome.  Negative words are damaging.  Be an encourager.

Kind words are like honey–sweet to the soul and healthy for the body.
Proverbs 16:24






Time for a little diversion. We need to feed our bodies as well as our minds and souls. So, I am sharing my favorite homemade granola. It is good in a bowl with some almond milk, as a topping on yogurt, or just for snacking.


1 cup organic, rolled oats (certified gluten-free)
1/4 cup sliced, raw almonds
1/3 cup coconut sugar
1/4 tsp Himalayan salt
1/4 tsp. Ceylon (or Mexican) cinnamon
1 egg white
3 Tbsp. water
3 Tbsp. raw, organic honey
1 tsp. grapeseed oil
2 cups raw walnuts
1 cup raw pecans
1-2 handfuls of raisins


  1. Preheat oven to 300 degrees.
  2. In a food processor, combine the oats, almonds, coconut sugar, salt, and cinnamon. Pulse until you have a rough chop. Do not pulse until you get a flour. Pour into an additional bowl and set aside.
  3. In the empty food processor, add the walnuts and pecans. Pulse to break nuts into pieces.
  4. In a large mixing bowl, beat the egg white until foamy (but not stiff). Add the waterhoney, and oil; whisk to combine.
  5. Add the walnuts and pecans pieces to the bowl of liquid and completely cover the nuts. Use your hands.
  6. Add the oat mixture to the bowl with the nuts. Using your hands, cover the nuts with the oat mixture. You will have more mixture than nuts.
  7. Spread the mixture onto a parchment-lined baking sheet.
  8. Bake for 15-20 minutes. Watch carefully to prevent burning. After 7 minutes, gently stir the mixture.
  9. After removing from oven, add the raisins.


So Goes My Nutrition, So Goes My Health


Recently, someone mentioned to me that I talk about food too much.  In fact, they think I am obsessive about it.  It is a funny feeling to be criticized for caring about nutrition and the effect it can have on your body.  I am still trying to figure out if it is true.  Am I obsessive about food?

When I was diagnosed with myotonic dystrophy (DM), I started to conduct research on my disease and what I could expect.  Since the cause of  DM is a mutation in my DNA, it has a wide-spread impact on my body.  In addition to weakening and wasting my hands, legs, and core muscles, the disease has and will continue to damage my heart and my lung muscles.  I have a high likelihood of becoming insulin resistant.  One of the scariest problems is that I have difficulty swallowing my food, and choke easily (even on water).

When I discovered that my muscles were being destroyed, I knew that I needed protein, that sugar was best to be avoided, and that I could help myself by being proactive.  I decided to make a difference in my experience.  The more I read, the more I learned that many diseases can be affected by consuming the right types of food.

My journey has taken me to a different level of awareness.  Some of what I learned, we all know.  The difference is that I decided to stop eating fatty or fried meals, refined sugar, and processed foods.  Simply put, I eat mostly organic, unprocessed foods.  Lately, I removed gluten from my diet.  The more that I take care of myself, the better I feel.

Just doing a cursory glance at food and disease, we can see a connection.  Diabetics need to watch their fat, sodium, carbs, and calories.  People with hypertension should avoid sodium, sugar, processed foods, coffee, and alcohol.  If you have a heart condition, you are advised to avoid sodium, processed meats, and refined sugar.  See the pattern?  Of course, many other physical ailments could benefit from a more balanced nutritional intake of foods.

So, knowing what I know, how could I continue to take in foods that are harmful or potentially harmful to my body?  Making the decision to take care of myself was a given.  If I can slow the disease process and improve my overall health, then I will do whatever I can.  The process to change lifelong habits takes time and commitment.  Finding recipes and new ways to prepare food has helped me to keep interested in making the changes.  Planning weekly meals helps to budget grocery bills, reduces waste (waist), and adds variety to my diet.

This past summer, my husband had a heart attack.  His recovery has been remarkable, and the cardiac rehab people were amazed at how quickly he was able to regain strength and lose weight.  A significant contribution to his recovery was his decision to move his dietary habits to align more closely with mine.  You all know the drill: reduce high-calorie foods, avoid refined sugar, limit sodium, and try to replace processed foods with unprocessed foods.  I am not a strict-adherent prophet calling out the warning to change your food choices because it does not work if you end up feeling as if you are on a diet.  It is a lifestyle change.  Listen to your body.

I modified my approach to food because it will (and has) a direct effect on my body.  Just like I changed by exercise pattern immediately upon diagnosis.  The doctors and healthcare professionals are human beings with their own agendas.  Some will take an interest in nutrition and some will not.  I had a nutritionist who provided me with a sample meal plan that included Saltine crackers for a snack every day.  It was at that moment that I knew I needed to take care of myself.

If I do talk about food too much, then so be it.  I plan on being around as long as possible, and what you eat can shorten your lifespan or lengthen it.  It’s your choice.