When I begin texting a new person, there often comes a point in the conversation when they hesitantly ask me, “So, I hope this isn’t rude, but how are you able to text so fast?”
I usually make a joke about my lightning-quick ninja thumbs, explaining that my disease has not yet robbed me of my capacity to move my fingers. Inside my head, though, I begin to wonder how long it will really be before I can’t use my fingers anymore.
Losing the ability to communicate is easily the scariest part of this whole SMA disease monster. Yes, it sucks that I can’t run outside and skateboard with my brother. It sucks that I need to be lifted onto the toilet. It sucks that I won’t have the muscle to play video games someday. There are many physical activities that are compromised by my disease.
But the scariest thought is that there may come a day when I’m no longer able to tell my family that I love them, no longer able to share a joke with a friend, no longer able to communicate my wants and needs and thoughts in an effective way.
It’s horrifying.
However, in my 23 years, I have discovered that technology may give me a chance to overcome this terrifying progression of my disease.
With nothing but a cell phone and a laptop, I have a created a way to communicate with the world on a grand scale over the last four years. I am able to effortlessly communicate with friends, family, and followers all from tiny devices in my lap. Because of miracle-technologies like voice dictation, eye recognition, and assistive touch, I will be able to continue this communication for years and years to come, long past the day when my mouth and arms and hands and legs and neck give up on me for good.
I can’t convey the profound feeling of hope this gives me, knowing there will always be technology available to help me overcome the communication challenges of my disease.
But not everyone with muscular dystrophy has those vital technologies that they need. That’s why I am dedicating our end-of-year campaign to providing technology to people who need it.
I give to you “Mission: Tech the Halls!”
During the month of December, my nonprofit and I are going to work relentlessly to raise $20,000. With these funds we are providing 10 iPads to 10 people living with muscular dystrophy. The remaining money will support our equipment-granting program for people with muscular dystrophy.
I need your help as a community to make this campaign successful. Anything you can do to share this post will be an enormous help, and if you have the capacity to give, I ask that you consider making a donation.
Interaction is the most beautiful part of being alive. I refuse to allow muscular dystrophy to strip people of that basic human function. Will you help me?
Link to the campaign: http://igg.me/at/tech-the-halls/x/9161855
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