Every day a new story begins for a fellow MdDSer. Someone who was recently diagnosed or someone who finally has the courage to accept their diagnosis and share it with others. Someone speaks up with the trials of getting a final diagnosis. Someone who has started a new treatment in hopes that it will work for them.
Every day we hear stories of how our journeys begin with MdDS. Was is a cruise, a flight, a car ride? Or was is something completely different like a surgery, a dental procedure, an elevator ride or a trip on a roller coaster? Was it instantaneous or did it slowly get worse over time? The journey for everyone is different, but we all end up on the same boat.
Every day we hear stories of how we are coping. We hear about different treatments doctors are trying to do to figure out what will work. I always say, I have MdDS and there is no cure, YET. It takes doctors finally believing in this disorder and willing to try different meds or techniques to get patients through it. Some treatments work for some patients. Some don't. But every day we open up about what we are trying to do to make our lives better. You never know what might work for someone else.
Every day we hear stories of loved ones. Those that are supportive and those that are not. I'm one of the lucky few who has the support of those around her to be able to overcome some of the worse symptoms. Unfortunately, there is a large percentage who are not as lucky. Those stories are the hardest to hear for me. No one knows what living with disorder is like, but then again like my husband tells me, "You don't know what it is like to live with someone who has this disorder." He doesn't say this to put down my disorder, but for me to understand the stress of a caregiver, which is what he is. Since telling me this, I have tried harder to explain what I'm feeling and he has explained to me how it affects him. I give him compassion just as much as I expect the same compassion given to me. (Idea for new post after this one....the perspective of the people around us....but back to this post).
Every day we have new supporters on our group show up to tell their stories of their loved ones and how they want to learn. They share their stories and we listen and give advise on how to help their loved ones. Their stories are just as important as ours because they are trying to better handle their own situations with this confusing disorder.
And every day we hear stories of hope. Hope for a better tomorrow. Stories of strength and courage. Stories of faith and love that we will get through this. Stories that we are no longer alone in a world that can feel very lonely. Stories of a possible cure one day. I always say, "I have MdDS. There is no cure, YET!" I have the hope that one day I can change that statement to "I had MdDS."
Our stories are important. Our stories get our words out into the world. Our stories are getting doctors to listen to us and try to help us. Our stories help each other with coping, with showing support for one another all over the world. Our stories need to be told so that the world can hear our cries for help but also our cries of strength. Our stories are important because without our stories we won't find a cure, we won't find out how many people are truly affected by this disorder, and the world will never know how bad this disorder can really be for each of us.
Our stories are important because there are those with MdDS who cannot speak of their disorder for fear of losing their jobs, their families, everything. Our stories are important because right now, in this moment, are stories are pushing us to do more, be more.
So every day I look for the new stories, and I write more to my story. I write for those who can't. I write to no only help myself cope, but also I hope that my words help others.
Every story is different, with one similarity, MdDS.
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