Alex Howard is a speaker in RespectAbility’s Disability Training and Speakers Bureau. He is also an alumnus of both our National Leadership Program and our Summer Lab Program for Entertainment Professionals with Disabilities. As part of a job application, Alex was charged with writing a letter to himself before receiving his diagnosis of MePan. MePan is a rare mitochondrial disorder – Alex is only 1 of 19 people in the world who has it. The majority of the 19 people are also Jewish and a significant portion of them live in Israel.
Currently, Alex takes comfort in being able to participate in research on how to help people with this disorder. By giving blood, he gets to be in contact with other people who know what he’s going through. He is, however, doubly unique as the only person in the world who has both MePan and Ehlers Danlos Syndrome, and for most of the first 30 years of his life, he was undiagnosed. This is a letter from current Alex sent to the Alex who was struggling with the unknown. Though he started it for a job application (he is looking for opportunities in the entertainment industry), it has helped him to realize that he really has a unique perspective on life that can be of value to the entertainment industry, which is looking for unique stories. Because October is National Disability Employment Awareness Month, Alex gave us permission to share the letter in the thought that it might help others to see the value of their uniqueness.
Dear Alex,
I know it seems like life hasn’t ever been easy. Living with an undiagnosed disorder creates a lot of self-doubt. I know you feel like no one really understands what you are going through. I can’t tell you those problems will ever go away, but I can tell you there are things in the future that will make things easier to deal with. [continue reading…]