• Sometimes you have to paint…to survive

    Sometimes you have to paint…to survive

    Applying for SSD

    Maintaining a positive attitude is my goal each day when I awake. I generally do a pretty good job of living well despite my chronic diseases; but I am a fallible human being with emotions and physical sensations. I experience stress, sadness, anger, and helplessness just like you. I have a wonderful support system and many coping strategies at my disposal, so I can usually get through any situation.
  • 5 Centimeters Per Second

    5 Centimeters Per Second

    Today I visited Powell’s, a famous bookstore in Portland. I had been excited for quite some time to go there so I could buy some books and kill some gift cards. Instead of taking my wheelchair, I chose to walk, which was not an insignificant choice for me. I had to envisage myself as strong enough to get everything I wanted; exploration suddenly became very daunting. For the past few months – 11 and a half by my count – I have been struggling with problems of strength. In the past, my legs were more capable of supporting my weight.
  • Cribs: ADA Edition

    Cribs: ADA Edition

    Fall is synonymous with change. Although I usually dig my nails into summer and refuse to embrace fall, I’m actually looking forward to the change of seasons. I’m in the process of moving cities, setting up my new apartment, and starting a new job. All of these changes are arduous, exhausting, and exciting.
  • Keeping Faith

    Keeping Faith

    I remember when I was in the midst of my struggle with muscular dystrophy, crying out after another trip to the hospital from extreme muscle pain. It seemed impossible to even roll over in bed, or to sit up to take a drink. As tears were rolling down my face in pain and frustration, I remember wondering “God, why me? What did I do wrong to deserve this?” It seemed no matter the amount of prayers, quilts made, and visits from pastors would help. My muscles still ached, and the side effects from my medications were taking control. How could I not be angry at God?