Teachable moments

How do we deal with uncertainty in a positive, productive manner?

from the Women on Wellness group. Adapted from notes by Ranae Beeker, RN

At our meeting in May, our group had a wonderful discussion about how and what makes us feel a sense of purpose and gives us a sense of autonomy and identity. We talked about knowing ourselves and the value we bring to ourselves, our loved ones, work setting, friends, groups, and community. We learned the importance of a teachable moment: Putting yourself first so that you can identify teachable moments. These moments promote our own dignity.

An example would be a family/friend gathering, where we would hear the importance of us attending, but the location of the gathering is not accessible. In such moments, it’s important to take a pause, a deep breath and be with yourself for a moment and practice self-compassion. And then consider how to respond. You may explain your thoughts or concerns:

• I know you’d like me to be there and join in on the activity. I appreciate the invitation, and this is why it doesn’t work for me. It may seem simple for you, however it isn’t easy or safe for me.

This is an opportunity to be gentle…or not… and explain how it isn’t accessible for us. At times it may feel like we are a psychological magician. Acknowledge to ourselves that what is being described doesn’t feel comfortable. Also, some friends and family members are easier to talk with than others.

These discussions can be exhausting, and prompt us to wonder if our loved ones are really aware of our physical needs and limitations. It is difficult for some individuals to begin to identify the challenges we experience. Sometimes we ourselves are not in the headspace to be able to appropriately or effectively handle the conversation. At times planning for each situation and potential can be anxiety promoting and overwhelming.

It is important to remind our loved ones we experience a progressive, debilitating, muscle wasting disease. The symptoms of the disease are not character flaws.

• We can’t pull ourselves up by our bootstraps and power through
• No we can’t pull ourselves up to a location, just this one last time.
• Yes we continue to love and appreciate them and being with them and a part of the family/group/gathering.

By educating our loved ones we are loving ourselves as well

Here are some helpful things our community shared about what to say in challenging situations. For example, if you have fallen:

• I have my own system for getting up. I know what needs to be done.
• May I borrow your muscles?
• You might be able to help me but I need to tell you exactly how to help me. I’m sorry to be so particular, but it is important for my safety (and yours). Please know I appreciate your desire to help me.
• If you do help me, please don’t pull on my arms as you can easily dislocate the shoulder joint. (Practical tip: Wear a gait belt when going out just in case you need help.)
• It is ok to touch me, I won’t freak out. If you need to touch my butt it is ok.
• I need your help , you’ll need to push on me in different spaces/places .
• I don’t want you to hurt yourself in trying to help me. Think of me as a sack of potatoes, I can’t bear any weight, I’ll share exactly what I need you to do.

“At times I feel like sharing very loudly with the world…. Hello, I am not Job (from the Bible)!”

We talked about feeling isolated and the challenge of dealing with other health issues. It is very challenging. Many shared they try hard to face life with grace and fortitude. It’s not easy, but all agreed that is the ultimate goal. The writer Eli Wiesel, one member shared, survived the terrors, abuses of the Holocaust with such a positive outlook. He said he needed to look at the positive of whatever he had to face. This member practices this approach too:

• She focuses on positive aspects or needs of her life.
• Concentrating on the good helps us to get reeled back in when we start to go off the deep end.

We reminded each other that allowing ourselves to grieve when we experience a loss in our fight over FSHD is quite important, so that we can get back up and continue to live a productive, wonderful and full life.

We learned of a good book to consider reading, How to be sick. by Toni Bernhard. It’s written from a Buddhist view point by an individual with a chronic illness. She has great insight, and is on cue with the many of the topics we discussed.

We can be in the moment, coping well with the situation, and also acknowledge that the situation does suck!!

Acknowledge all that you have overcome, the big and the small. Acknowledge your gratitude for the wonderful, loving people around us. At the end of the meeting we went around and shared what each of us is grateful for. It was very moving for me. I heard from others that they felt the same way.

Tips & tricks

During our discussion, we learned about Medical Emergency Chairs/Carriers to help with transfers. Inexpensive, it can be purchased from Amazon, Walmart, and other online vendors. Our member carries one of these with her, in the car and at her home.

The gait belt mentioned above can be found at Gait belts with handles.

The full notes from this meeting contain additional great tips, news, and ideas. You can download them here: WOW 050124 teachable moments positive outlook.