Dear Invisible Struggle,
I know you exist, but my husband deals with you with grace everyday.
I know you exist, but you can also give rise to Invisible Strength.
"Inner Sanctuary" is about strength. My husband Joachim has Myotonic Dystrophy, a disease which makes his muscles weaker every year. This week, his sister who also has Myotonic Dystrophy and I will travel to Washington DC with him for the annual MDF (Myotonic Dystrophy Foundation) conference.
Joachim will share his invisible struggles with others during this time. He'll appear well dressed and well spoken. But there are things that remain invisible to you. Here's an excerpt from the talk he will deliver.
Joachim: "I cannot lift my arms over my head anymore. How do you put on a hat, t-shirt, sweater, polo shirt? How do you close the top button of your shirt or put on a tie? How do you wash your hair or dry up with a towel? I had to learn tricks to defy gravity – sliding up my arms along the shower walls, bending over to dry myself or put on clothes. – or simply stay away from certain things. All these adjustments happen even before my day really starts!
I have a voice that is nasally and a tongue and jaw that easily cramp up, which makes it harder to speak clearly. When I speak in front of more than 8 people I always request a microphone at work – it helps a lot. Before I make a call, I “warm up my tongue and jaw” so I can speak more clearly. But sadly it has also led me to not speak or ask questions in certain settings for fear of not being understood.
What about social life? Believe it or not, I will not order a certain drink or dish that I would love to consume because I cannot pronounce them easily in a way that the waiter would understand me. I’ll ask for beer – once, twice, three times - only to get a sorry and dazed look on the waiter’s face. So I’ll ask for water – that’s usually much better understood. Sounds like a small thing, but it is very very frustrating.
Even more frustrating are larger social gatherings or parties, where people will not understand me. My adjustment? – Avoid the next party or try to meet with friends in a quiet setting.
So now when you look at his portrait below, see the strength he needs to conjure up to engage in daily life. Joachim credits his strength to his faith in God. God gets him through when he enters his inner sanctuary.
"Inner Sanctuary" got accepted to the Allied Artists of America 103rd Annual Exhibition this fall. You can see it at the Salmagundi Club (47 Fifth Ave., NYC) this Sunday at the reception between 1-4pm September 18. Let me know if wanna meet up! Joachim and I will definitely be there from 3-4pm. If you can't make it Sunday, you can visit now till Sunday (Weekdays: 1-6pm Weekends: 1-5pm)
If you missed my blogpost from last time, here's the link to my Summer Selfies being displayed in New Hope, Pennsylvania right now: