Having Duchenne muscular dystrophy is hard because of its progressive nature. I can no longer participate in activities the way I have in the past. As the disease advances, it is important for me to select friends carefully. Not everyone sees past the wheelchair and my weakness and appreciates me for who I am. Friendships with people who see through to my personality are as rewarding as they come. They feed my soul.
I was active as a child. In third grade, I remember using the playground and playing handball. Life is different now. I stand and walk only about an hour every day. The rest of the time, I use my powerchair.
My reduction of mobility is a given, however slowly it happens. Some of my childhood friends changed their perspective as I became less active. They were apprehensive about inviting me to house parties, amusement parks, and the beach. I knew what they were silently thinking: “How could Hawken do that?” I felt like a burden.
Many other people, including my friend Michael, made me feel welcome. These friends took the initiative and helped me out. I didn’t feel like a burden. We made piggyback rides fun, and sat back and played video games when I was physically exhausted. The group of friends I made through the USC Christian Challenge campus ministry did the same when I went to Disneyland with them last year. They hoisted me out of rides, waited back with me, and made sure I was enjoying myself.
People, as Forrest Gump might argue, are like a box of chocolates. You don’t know what you get until you become friends with them. That’s the best way I can describe choosing the people around me I want to run with. It’s why people date. We make sure our personality, worldview, and faith align before we get married. There will be some issues otherwise.
Duchenne has forced me to seriously consider people before we get any closer. Will they be with me for the long haul or will they jump ship and let me drown the moment they see a better opportunity? I need to know if someone wants to become friends because of who I am, not because of what I give them. One person, who I quickly realized would be with me through the thick and thin, is Reo Kobayashi.
Reo reached out to me first to seek advice about how to navigate journalism and college with a disability. After meeting up with him consistently for a few weeks, we realized we had a lot in common. We were connected through our faith in Jesus, a sense of humor, similar skill sets in journalism, and the challenges we face daily.
Since we met at the beginning of my spring semester, we’ve shared many tears of laughter, despair, and joy. We understand each other on a level that I never expected to have with anyone. Friendships, like most relationships, are founded on trust, and I quickly realized that’s something Reo and I have. He is committed to me spiritually not only because neither of us is physically able to help the other, but also because we appreciate our distinct personalities.
The secret to finding and securing lasting friendships is appreciation. If you love the other person because of who they are on the inside and not how they appear to everyone else, then you are starting down a beautifully paved path ahead.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.