“Softness opens doors that force cannot move.”

This quote really resonated with a lot of you, as it did for me. Living with a rare disease or chronic illness translates to constantly working with your body. Softness comes with the territory. You can’t have an ego if you want to better yourself and grow.

This has been living in my mind since I first read it; I actually had a thought that it might make a really good tattoo.This led me to the idea of incorporating it into some merch- introducing the Spring Collection!!

I placed “Softness opens doors that force cannot move on the sleeve of these sweatshirts. You can also find it on these t-shirts. Finally, here and here are the new tote bags!

I’ve given a lot of thought to what softness means to me. I think softness is intertwined with feminine energy. The more I live in my feminine energy, the softer I become. I’ve narrowed it down to living with grace, accepting help, and showing compassion towards my body.

Living with Grace

The definition of grace is elegance or beauty of form, manner, or action.

I know I am the perfect combination of strong and sensitive. Anyone who knows me well, knows I get emotional about pretty much anything in life; everything from a gentle scolding in elementary school to giving a speech as the Maid of Honor at my sister’s wedding brought tears. I know my sensitivity is a gift.

With my FA diagnosis, I have built insurmountable strength. I believe when you combine strength and sensitivity, you get grace. It’s elegant and radiant. My lack of balance and coordination is certainly not graceful from the outside, but deep down it’s undeniable.

If you are living with a rare disease or chronic illness, I guarantee you radiate inner strength and grace, even if you don’t feel it.

Accepting Help

Accepting help as someone with a progressive neuromuscular disorder is no easy feat. What used to be driven by denial and a need to prove my independence is now driven by the desire to keep doing tasks until I no longer can. ”Move it, or lose it,” as they say.

There are a million reasons to not accept help, but I find that when I do, I find a semblance of peace I didn’t know I needed.

There’s a fine balance between accepting help and doing things on my own; I’m constantly weighing the options. Is this task worth my time/ energy/ peace?

Here’s an example: Every month or so, I get a 15-lb bag of dog food delivered. It typically is delivered in a bigger-than-necessary box in a locker in my mailroom. With energy and strategy I can get the box out of the locker, carry it to my apartment, open my door and bring it to the dog food container. After I take a break, I grab the scissors and sit on the floor to open the box and then the bag, and then hoist the bag up to pour into the container. It takes a lot of strength and a lot of effort.

Recently, I’ve been asking friends and family to do it. Not only does it take them less than a minute, but I save that energy and can use it towards something more fulfilling.

By asking for and accepting help, I find that place of inner softness.

Showing Compassion to My Body

If you have a rare disease or chronic illness and are anything like me, you probably push your body to its limits. But, what if you didn’t? What if, instead of fighting your reality, you showed your body compassion?

This might look like stopping and resting well before your limit is reached. I sometimes let myself curl up and watch a comfort show before I’m exhausted. I try to go to bed well before I need to prioritize sleep. It looks different for everyone.

It might look like showing yourself some self-care. (Here’s why that’s important. You can shop my self-care Amazon favorites here)