Fundraising.
That has been on my mind. I don't know what its like for other people with other chronic diseases ad won't pretend to. I only know what its like for us, the EDSers, the chiarians. There is an order to the things that happen to us. We get sick. We search for years while doctors tell us we aren't sick, we are fine, we are misdiagnosed. Finally, we find that one doctor who puts the puzzle together and sets us on the path to more diagnosis. We learn that we have a collection of rare disorders. We go through denial, anger, grief, more anger and sometimes, if we are lucky, acceptance. Then we learn that there is no cure, there are only medicines and surgeries to repair the damage to our bodies. Next, we begin the hunt for a neurosurgeon that knows what to do to our broken spine, skull, brain and nervous system. We finally find others like us and connect and learn that there are only a handful of surgeons in the world that know what to do to us. Going to the right surgeon, one who understands our complications, can mean the difference between life and death.
So far, so good, right? We know what we have, we know what we need to repair our bodies and we've found the doctors that know how to save us. Now for the problem. These doctors are most often hundreds, if not thousands, of miles away from us. Seeing them means we need to pay travel expenses, motels and food. We need specialized tests, sometimes. Then comes the surgeries. Often our miracle doctors are not contracted with insurance. This means that we don't get to roll in for surgery and pay a deductible or a copay. We usually have to pay deposits in the thousands. Its worth it to live, right? But, how do you pay so many expenses and deposits if your sick and can't work?
This is where fundraising comes in. This is the biggest obstacle for most of us. When you've lost so much, your health, your income, your independence, how do you let go of your pride as well? Its so hard. We were workers, achievers, go getters. Now, we are beggars. This was nearly my breaking point. I was always proud of my strength, my independence. For each surgery I have had, though, I've had to ask for and accept help. It kills a piece of you, eventually. But, its better than letting the disease kill all of you. Sometimes a very kind person hosts a fundraiser for you just as someone did for me last year. Sometimes we fundraise online (see my link in the top right corner). Sometimes some angels out there leave a check in your mail. We learn to swallow our useless pride and say thank you to these great people.
How much is too much, though? I have had three surgeries and many, many trips to MD to see my surgeon. I still need another surgery if he will do it. I still need at least one or two more trips to MD. I can't drain my friends, though. I can't work, either. So now what? Let this take me or beg some more and deal with my suffering soul later?
This, my friends, is what its like to be us. We want to live and will ultimately do whatever it takes. When you give money to charity, think of those who might not live without it. And think locally if you get the chance. And know that those like us, those who know what its like to try so hard, will often pay it back or pay it forward. Just saying....
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