The Cushing’s community, led by our “fairy godmother” MaryO, has been hosting a Cushing’s Blogging Challenge for the last several years. You can find more information here:
April 8 is the birthday of Dr. Harvey Cushing’s, the “father of neurosurgery” and the first physician to document Cushing’s. To celebrate his birthday, Cushing’s patients are banding together to write blog posts on topics related to Cushing’s every day in the month of April. I am going to try and stick to this theme, but weave in a few posts here and there about what is going on post-Cushing’s as well. So stay tuned!
For my first post, I would like to take a little time to talk about MaryO and how much I, and the rest of the Cushing’s community, owe this wonderful woman. MaryO first started seeing the first signs and symptoms of Cushing’s in the early 1980s. After countless rounds of doctors appointments and dead ends, she was finally diagnosed and had surgery at the National Institutes of Health by the late 1980s. She subsequently went through the difficult recovery from surgery and from the damage Cushing’s did to her body over the years she was sick. This part of the Cushing’s journey MaryO shares with many of us.
What MaryO does not share with many of us is the fact that she didn’t have the same access to information and support that so many of us depend on to get through this frustrating and complicated diagnosis and recovery process. There were no online support groups. No PubMed articles available at the click of a button. MaryO spent hours researching Cushing’s in a library, figuring this mess out on her own. And after she figured it out and began the slow process of recovering she did something even more remarkable. She stuck around to take care of hundreds of us that were to follow her into the Cushing’s abyss.
MaryO launched a website in 2000, and subsequently message boards, to share information on Cushing’s with other patients and to give Cushing’s patients a place to come together and learn from and support each other. And because of MaryO, thousands of patients have come across her site, learned from the information MaryO and others posted and met valuable allies to help guide them through the struggles that were to come. And many of MaryO’s followers, out of gratitude for this community, stuck around too and helped the next generation of “Cushie’s” get their lives back too.
When I fell into the Cushing’s abyss in 2012, I struggled for a year in the dark by myself before finding MaryO’s site. And that site changed everything for me. I learned everything from these anonymous names and faces on the internet – when I should test, which doctors I should see, what questions I should ask, what the test results meant and didn’t mean. Just as important, I got the validation that I desperately needed – my symptoms were REAL and they really were as debilitating as they felt. I wasn’t in control of the horrifying transformation my body was making or the equally horrendous changes in my personality. The doctors who tried to tell me there was nothing wrong with me needed to be fired and replaced with better doctors – and they knew which doctors I should see (and they were right). Out of the abyss came dozens of helping hands who knew exactly what to do and what to say to help me. And they just kept helping. They didn’t know me. They didn’t owe me anything and there wasn’t a thing I could do for them – I was scared and barely keeping my head above water. But they stuck with me, answering questions, encouraging me, commiserating with me, cheering for me when I finally started getting positive test results and got cleared for surgery.
I can’t think about those days and MaryO and this community without ending up in tears – not because of sadness but because of the overwhelming gratitude I feel. And now that I am on the other side of Cushing’s, it is so clear to me why so many patients stick around to help the next generation of undiagnosed patients that are stumbling around in the dark – gratitude. I owe MaryO and this community a debt I will never be able to repay. They saved my life. My dearest, closest friends today are friends I met in this community. We have gone through something together that has fundamentally altered us in ways that I could not have anticipated and I wouldn’t want to change.
So, as a very small drop in the bucket I owe these amazing people – and especially the lovely MaryO – I am honored to participate in this challenge.