May of 2010 was a watershed month for us. On the 10th we went on a field trip to the zoo. Our lives have never been the same since that day. I remember being a little concerned about how Em’s legs would handle all the walking that a trip to the zoo would require; I had no idea that that walking would send her into a flair that would take years to recover from. The fallout from that trip resulted in us figuring out that these strange symptoms were, indeed, EDS and embarking on a long and winding journey that continues even today.
That first May was a time of being battered by this storm that suddenly appeared in our lives. We were in shock and just trying to figure out how to survive. I don’t know that I was even aware that May that it was EDS Awareness Month and, if I did, it slipped by with no acknowledgement on my part. Truth is, I was desperately trying to become aware myself, I had no reserves for sharing knowledge with anyone.
Our first proper EDS Awareness Month, in 2011, found me in even deeper despair than the previous one did, Emily receiving an official diagnosis by the country’s leading EDS expert notwithstanding. For, at the inception of the storm in 2010, there was still hope that perhaps Emily would not be a bad case, that she would avoid much of the horror stories I was reading. By May of 2011, we were in a very low spot because she had not avoided the worst and was clearly a bad case. Not only did she have daily dislocations and severe pain, but she had been plagued by debilitating autonomic symptoms and the neurological symptoms had progressed to the point of the idea of a cervical fusion being floated. She had been in a wheelchair for months at that point and there seemed to be little hope. Little did we know that hope was just around the corner. The next month I would find The Answer and Em’s life was about to be wrestled back.
May of 2012, saw us frustratingly bowed down by her sudden appendectomy, after months of stunning improvement. We had found the Driscoll Theory and eventually had the opportunity to try Diamox. What a difference it made. Truly, Em had her life back. No, it wasn’t all perfect but the reduction and control of that awful headache gave us the opening to make real progress. To have that scary surgery threaten all of our progress was extremely frustrating. However, we greeted May that year with a profound thankfulness, because we understood how close we came to losing her.
In 2013, we flipped the calendar page from April to May with some weariness and caution. Not only were we apprehensive about what the coming year might look like, but Em was still not completely over her appendectomy; that May, she wasn’t totally recuperated but was finally making headway again. We started getting cautiously optimistic about the future. She was generally doing better, seemed to be stabilizing. It was almost too good to believe.
This May, our fourth year of [knowingly] living with EDS behind us, we can look back and see how far we have come. Em is still struggling, but that is to be expected. She is doing well on her medication regime, it is giving her the opportunity to have a life. She has, after all these years, finally been able to do theatre again. She was a nun in The Sound of Music and it was an amazing experience. Maybe it didn’t make up for all the lost years, but it did give her something to be proud of and to aim for.
We have learned a lot over these past 4 years. I have grown and this blog has grown with me. I started off blogging in the depths of despair, in our darkest season. I truly didn’t know if anyone would ever read, but I had to get the words and fear and frustration out somehow. And this blog became my diary, my journal, my confidante, my support, my sounding board, and now a platform to share our experience and our hope with others.
The purpose of having a month of awareness for EDS is to help others learn about it – to share information about symptoms and treatment, to reach out and support those who live with it and to offer hope, along with reality. To communicate: You are not alone. I remember so vividly reading the horror stories and feeling my heart shatter as I faced my daughter’s uncertain future. I remember clinging to the few hopeful stories I found, desperately clinging to the faint hope they offered.
And, it has been my greatest privilege to offer that hope to others: Life with EDS can be good. Research and treatments are improving the lives of those with EDS and the future gets brighter with every day that passes, even for those suffering the most. Life with EDS is worthwhile and beautiful. There is a truth and beauty and grace that can bloom in the midst of suffering; you can be happy even living with EDS. Life with EDS is ok. You will be ok. Really.
So, share your knowledge or soak it up, whichever you need to do. Use this month as a path to greater knowledge and let us all spread the word about EDS. We may not be able to cure it, but we can fight it and, together, we can beat it.