In honor of National Invisible Illness Awareness Week (September 10 – 16, 2012), I have decided to repost an essay I shared a few months ago. This essay sums up what life has been like for my family since my 13 year old daughter was diagnosed with Ehlers Danlos Syndrome .
I have come to realize exactly how much living with a chronic illness is like Alice falling ‘down the rabbit hole’. Having a child with Ehlers Danlos Syndrome, a rare genetic condition, is strangely akin to Alice’s experience of unexpectedly finding herself in a surreal land. Although Alice in Wonderland has never been one of my favorite stories, I find that I now have a bit more empathy for Alice and her adventures, having fallen down the proverbial rabbit hole myself!
For my family, like Alice, it was a long, disorienting fall before we realized where the rabbit hole was going to transport us. The fall was long enough to be conscious of the change we were undergoing and to feel, in turns, anxious about what was happening and just plain ready for it to end. Finally, landing with a nerve-wracking thump, we got a diagnosis of EDS and we had to face the alien world we found ourselves in.
We found ourselves in a topsy-turvy world where little makes sense and riddles abound. Where my own personal ‘Pool of Tears’ is topped off on a regular basis as I watch my daughter carving out a life amidst her challenges. Down the EDS rabbit hole, I have the surreal task of being thankful that the particular genetic mutation my daughter has won’t kill her, but will just make her suffer for the rest of her life. In this upside-down world, the doctors often know less than a mom with absolutely no medical training. Here, the simplest actions (like picking up a bottle of water or rolling over in bed) can, and frequently do, cause significant pain and even serious injuries. Body parts that ‘can’t’ dislocate, do; the ‘impossible’ is all too possible and ‘normal’ is a moving target. It is a land where nothing is as it seems and even necessary things like nutritious food can be harmful; where walking across the room is as challenging as running a marathon.
We haplessly follow the White Rabbit to one specialist after another, as we deal with the host of co-morbid conditions that come along with Ehlers Danlos Syndrome, few of which the doctors seem to know anything about. Gymnastics, dance, soccer – all the trappings of a normal childhood have vanished, bit by bit, like the Cheshire Cat, and we have now a wheelchair and physical therapy in their place. Tea is served daily here, with large helpings of madness, as we learn to live with an invisible illness, in which my daughter and others like her, often look perfectly normal – young, beautiful and seemingly healthy – while actually being very, very ill. Instead of the Queen of Hearts shouting ‘off with their heads’, we have doctors who pat themselves on the back while spouting inane things like‘You’re so flexible you could be in the circus’ or ‘Just eat your green vegetables and everything will be ok’. If only I could do as Alice did: scatter them to the wind while defiantly shouting ‘You are nothing but a pack of cards!’ Alas, this is life with Ehlers Danlos Syndrome and there are no such simple solutions.
We have now more or less adjusted to this odd place, this decidedly UN-Wonderland, we find ourselves in and have settled in for the duration. Because, unlike Alice, we won’t ever get to wake up from the dream and go back to reality. This weird world of EDS is our reality and we are stuck here, like it or not. Our task now is to make the best of the situation that we are in – to mold and shape this world into a pleasant, habitable place. We will make it make sense and leave it a better place for the next generation, by educating the doctors and sharing awareness about this rare condition, by finding answers to the riddles of EDS, and by befriending other families who have tumbled down the same rabbit hole. For, although this is a lonely place at times, we are not alone – we share this journey with other EDS families who help us and whom we are blessed to help.
And perhaps, in time and with some hard work, we will eventually come to view this as Wonderland after all. Because, once you get used to the ‘upside-downness’, life here is somehow a bit, well, more real – more meaningful and precious than it was before we took our tumble. Perhaps, in some strange way, when we fell down the rabbit hole, we accidentally found reality instead of losing it.
If this is reality, I’d honestly rather not be here at all. Life with an incurable, chronic illness is hard and terrifying and exhausting. But, sometimes it is not only good, it is wonderful and amazing and brilliant. No, this isn’t the life I envisioned for my family, but it is our life and I have learned enough on this journey to be boundlessly grateful for it. Falling down the rabbit hole has a way of permanently rearranging your life and your priorities. Just ask Alice – or, better yet, anyone who lives with EDS.