Invisible, But Not To Me
I was hoping the first one was just a fluke. An isolated incident that didn’t mean anything awful was in the works. What I didn’t know then was that a new journey was just beginning, one that is uncertain, scary and invisible - almost all of the time, to everyone but me.
While at a goodbye lunch with coworkers last July, I had what we now know was a grand mal seizure. It came on from out of the blue and when I woke up in the back of an ambulance, I had no idea how I got there. Foggy and confused, floating in and out of consciousness, I have never been more grateful to see the faces of my kids than when the doors to that ambulance opened. My future husband arrived at the hospital a few minutes later, just in time for me to let the tears of fear begin to roll. I didn’t ask how fast any of them drove to get to me, but this wasn’t the time for a lecture about safety.
If you know me well, you are aware of my aversion to needles, blood and essentially anything medical that might be even remotely painful. I have worked my whole life to conquer that mountain and usually do just okay in medical situations. That day I was a rockstar, enduring all the tests and pokes with no complaint - because there were bigger, scarier things running through my mind. What on earth had happened? Skip ahead several hours and I was being sent home with a prescription for seizure meds and follow up appointments. Thankfully, we had crossed off some really big and ugly possibilities, but what I didn’t have was a diagnosis or a cause. If you know me well, you also know I am not a fan of uncertainty!
More tests and appointments to rule out additional issues provided no further answers. I am a good patient, cooperative and compliant. I do all my homework, plenty of research, take my meds and adhere to preventative guidelines. However, I am not very accepting of “We don’t know.” as an answer. What irritated me even more, was some other people’s seemingly relentless need to know what was wrong with me, what I must have done to cause it and/or what I was going to do about it. Believe me, no one wanted answers and concrete action steps more than I did - but I started to feel blamed and like my unknowns were an inconvenience for others. The opposite approach was those who acted like nothing happened, never asking how I was or if they could help - leaving me feeling unseen and unvalued, but thankful for now knowing the truth of their character. (To those who fell in the middle - endless appreciation coming at you from this girl for your love, support and thoughtfulness!)
It soon became blatantly obvious that ‘not knowing the answer’ is a lesson I am meant to be learning in this season of life. So, I accepted the facts I had in front of me - I had a seizure. I didn’t know why and maybe never would. I could be on seizure meds indefinitely. People are sometimes too much or too little and oh yeah, I couldn’t drive for the next 6 months.
Want to know the recipe for turning a highly independent female into a caged animal? Take away her ability to freely get where she needs to go when she wants to go there! Want to know how to teach a human with a “helper” personality type to learn to ask for help? Require her to ask her family to take time off work to take her to appointments, run her errands and get her out of the house for a change of scenery. Want to know how to ensure a socially engaged soul with big dreams to share and magic to execute feel melancholy and isolated too much of the time? Make sure to make it challenging for her to meet up with her people and attend to all the details to pull off the special memory making occasions she thrives on.
You see, to those who only choose to see the surface level, I looked fine and they expected 100% normalcy from me - which I could not deliver. For those who looked a little closer, they knew I was dealing with something heavy. Some chose to ignore the obvious, but others stepped in - to dig a little deeper and see if they could be a ray of sunshine. Those that lived it with me had a front row seat to the multitude of emotions, did what they could to alleviate my frustrations, carried extra weight that I couldn’t, held my hand thru the scary and dried my tears when discouragement hit hard. I don’t know how I would’ve gotten through without them and am extremely grateful for their presence and persistence!
The holidays and our wedding took place toward the end of those long months I was grounded from my lovely new SUV, Luna. The joy of those beautiful events definitely overshadowed the struggle I had been going through. With help, I took what really sucked and figured out a way to redeem that period in my history. I learned so much about myself and others during that time. I got my driving privileges back - it’s was so strange to do something for the first time again that had been habit for almost 40 years. Fear and uncertainty were still in the back of my mind, but I had accepted their presence and returned to regularly scheduled programming, until…exactly one month later.
We are now a month into life after my second grand mal seizure, which happened on our honeymoon. (An excursion to a hospital in a foreign country via ambulance was not on our agenda!) I am now considered Epileptic. The journey to learn more about what that means is underway. I am controlling what I can and accepting that there is much I cannot control. There are things I likely will never know, but I will become a master at navigating in uncertain waters. It is scary at times, but I am relying on faith and know that I am certainly not alone. Above all, I am not dismissing the weight this development in my life has introduced or the wide variety of feelings that are associated with a new chronic medical condition. Having a seizure disorder leaves a person really vulnerable when they are alone and I am working on tackling my confidence around that. Knowing that I could take the best care of me, take my meds, follow all the protocols, ask for help and still have a seizure is discouraging, but that won’t stop me from doing my best. Could it have been a way worse diagnosis? Absolutely and I am grateful it wasn’t - but this is not the Hardship Olymics and all feelings are valid! Being Epileptic is new to me and it is life changing. You see, I have an invisible illness.
I share all this with you not to generate sympathy for myself, but to shed light on what it can be like to live with an invisible illness. The list of these types of conditions is long - Google can help you research that if you want to know. Someone looks at me and will not know my health status or how it might limit my choices and endanger my safety…unless I have a seizure in their presence. I don’t look sick, but my status could change with zero notice. As I have navigated my new reality, I am starting to understand and appreciate how those who have had invisible illnesses for years must feel. The lack of compassion and understanding they sometimes encounter when they cannot run full-tilt anymore or follow random, often senseless rules and regulations. The extraordinary medical expenses and the time suck of so many appointments. The lack of concrete paths to a fix and the frustrating inability to find it or provide it for themselves. The betrayal felt toward your own body when it holds you back from executing your to do list or chasing your dreams. The ignorance of others who say they care (but their actions indicate otherwise) and the isolation from those who actually might. The undeniable tenacity it takes to not let something so many don’t recognize or understand steal your happiness and the will to carry on joyfully.
I have to take care of myself first and embrace (code for deal with) my invisible illness, but I am choosing to do it publicly - to maybe give hope to others who share my burden as their own and encourage them to also speak out. We need to go through life assuming others may be dealing with things we cannot see. Not making assumptions about their abilities or struggles. Realizing that what you take for granted might no longer be an easy part of their daily experience. My invisible illness is not who I am, but it is part of my story. I will not hide, feel shame or tolerate judgement from anyone - instead, I focus on sharing whatever sunshine I can with those who, like me, live with invisible illnesses.
If you are blessed to not have a lovely invisible illness of your own, take a moment to be grateful for your situation and then I challenge you to look at those around you and see if perhaps you can be the sunshine for someone who does.