Although we are coming to the end of it, today is Epilepsy Awareness Day.
If you missed it, that’s OK. Epilepsy also has November for awareness month. Hopefully you were able to wear a little bit of purple. Although honestly, I didn’t.
I knew it was Epilepsy Awareness Day but still forgot to wear purple! Maybe because in our house, every day is Epilepsy Awareness Day. In more ways than one.
From living with a spouse with epilepsy, to writing my blogs, to posting in our Facebook group, to managing the GoFundMe page, I am consumed with epilepsy awareness. I know that with each entry, post and update, I am helping to spread awareness to others through our life stories and others.
Someday ROC Stop Seizures will be more than raising awareness but will also be a way to help others with epilepsy in their day to day lives.
Working remotely from home generally has its pros and cons. Working remotely from home with a spouse or partner also working remotely from home adds even more pros and cons. Now consider working remotely at home together when one of the pair has epilepsy. It changes the game even more.
We are getting pretty settled into our remote from home routine here. Maybe too settled because today we learned about the pros and cons of working remotely with epilepsy.
Pro: At least I was home when the severe myoclonic jerks started.
Con: I had a phone headset on while for a telephone conference so all I heard was faint yelling from the other room.
Pro: I was standing next to him ready to do what I needed to do at the point it looked like he was starting to have a major seizure it it never came.
Con: Instead of lying down and resting to stop anything worse (which to me looked like it was about to), he was frantically running around trying to clean up water he spilled from the jerk and wanting to get back to his computer to tell his supervisor he can’t work.
Pro: He was able to take his rescue med and finally agreed to let me handle notifying his work.
Con: We have both lost time from work as a result.
Pro: I would have lost more time if I had to leave an office, drive to get him from his office, and then get him home. Plus I can flex my time and make it up.
Con: The stress on both of us. But then again, we always have the stress that a seizure can come at any time.
Pro: Our son was at school and did not have to witness any of it.
Con: The rescue med makes him so tired.
Pro: He is in bed safe and resting.
When I look at it, there are more pros than cons to working from home together, epilepsy or not. We are lucky he did not have a major seizure and instead had major myoclonic jerks. We are lucky I was in the house with him and I know what to do. We are lucky the rescue med did what it’s supposed to do. We are lucky to have each other.
I wonder what it is like to be a child of a parent with epilepsy. We have tried to talk about it with our now five year old but we can’t tell how much he really understands.
We have been fortunate that Ryan has not had a seizure in front of our son. Trust me, Ryan has had seizures in the house while our son was home but luckily our son was sleeping, eating, or could be distracted at the time.
Our son also knows that daddy has to be in the hospital every now and then because “the doctors are trying to see why daddy’s brain is making his body do things he doesn’t want it to do.” Our son also knows not to play with toys that have flashing lights in front of daddy (although we try hard not to let any in the house) because the flashing lights aren’t good for daddy’s brain.
Often I watch my boys rough housing (as boys do) or I listen to them working on a project together and I’m overjoyed. It is so great to watch and hear them bond. It makes me happy to know that Ryan is feeling well enough to be interactive and playful.
Yet there is always the voice in the back of my heading making me worry that it will be that moment, that it will be that very first time, when our son experiences Ryan having a seizure. What will our son do? What will I do? What effect will it have on our son?
As I said, we have been fortunate so far. I hope that we can shield our son forever but I’m sure that’s not possible.
If there is anyone out there who is the child of a parent with epilepsy, I hope you will open up to us with tips, stories, and support on what we should expect and how we should approach our five year old son about this very serious issue.
Wow! Yesterday I was at the lowest I had been for a long time. I was mad at the world and sad at the same time. It was so bad I scared myself!
It didn’t help that Ryan wasn’t doing well either. I could tell he wasn’t so angry but he was showing physical signs: break outs on skin, myoclonic jerks, etc.
We both did what we could to get back on track. We worked out. We vented to each other. I texted in anger with my best friend I posted on Facebook about it. I tried to work, play with our son, get housework done. All to take my mind off of things
Yet at the end of the day Ryan fell asleep with a rescue med in his system and I was still wondering if I could shake this depression.
And overnight it happened…we got a fundraising donation…we had friends inviting countless people to join our fight to raise epilepsy awareness…we had strangers sharing our story and need for help.
I woke up this morning seeing all the love and support. I woke up in a better mood overall. Of course I still have the fear that Ryan will wake up to more seizures and jerks but I have that fear every day.
Our good friends who run Transplant Warriors just this morning reposted from Power of Positivity the words that describe me best this weekend
Thank you to all of my Friends and family, including my Facebook friends and family for all you have done to get me through this. Whether or not you realized you were helping or should be helping, you did.
Today may be a struggle later depending on what the day and Epilepsy brings. For now I will hope for a seizure free day, straighten out my crown, and keep moving.
I am scared. I am not scared for the reasons one may think. I am scared of SUDEP every time I wake and Ryan is sleeping incredibly quiet. I am scared that the anger will take a toll on our relationship. I’m scared that I won’t be able to hide how scared I am every time Ryan has a seizure.
So yes, I’m scared of coronavirus but not for the same reasons everyone else is. We are both working still, albeit remotely. The daycare is still open, for now. We buy in bulk and stock up routinely so we have food and paper goods. We practice good hygiene and universal precautions on a regular basis.
Coronavirus scares me because Ryan can’t get the surgery that could have alleviated my fears of SUDEP, of anger issues, of my strength, of epilepsy. It scares me because I question what type of treatment will Ryan get if he has a seizure that goes too long or causes him to seriously hurt himself. It scares me that the funds we had to cover what we could now will be gone by the tentative new surgery date. Most of all it scares me because there is no telling when all of this craziness will end and that it cause the surgery to be postponed even longer.
It has been a very stressful couple of days these past few days. It all started with the call to Ryan to tell him that the surgery is postponed to next year. There is no treating this quarantine like a party or like it’s a good time for family bonding. Joking about it doesn’t even relieve the stress. No, we are struggling to run each day like always…because we have no choice to keep routine the same…but coronavirus is making it more and more difficult.
My writings were never intended to focus on the impact of coronavirus on epilepsy. Rather they were intended to help others learn about epilepsy from a person who doesn’t have it but lives with it. Now it has all become commingled. And that is a fear come true.
The surgery is postponed…by 326 days. It feels more like a slap in the face than postponed.
We took yesterday to process, to grieve, to be angry. Today it’s my duty and mission to help Ryan and be here for him. I’ve seen him spiral out of routine and good habits before. This news can easily start him on the fast track down once again.
My first task is to look for the silver linings in all of this mess. So far I have: 1) we are both working remotely from home now due to coronavirus so he won’t be home alone if he has a seizure. 2) we have another 326 days to ensure we are financially able to afford the surgery and needs surrounding it. 3) we have another 326 days to educate the community and help others like Ryan.
So now that the silver linings are identified, at least the ones I can think of for the moment, the immediate focus is on Ryan. I will keep working on achieving the silver linings/goals for our family and for ROC Stop Seizures but today is about Ryan and helping him to see the silver linings too.
For Ryan, when and if you read this, remember you are loved by many, followed by many, and supported by many. We have had many hurdles since we’ve been married. We will get over this one too.
I knew yesterday was too good to be true. I got things done at work. It was a seizure free day for Ryan. Our son was in a great mood and thereby put me in a great mood.
But the tears started at the very end of the day when Ryan tried to show me the YouTube video he made for our son. This morning I was reminded of the video when scrolling through Facebook.
This morning I also found an article about a girl who had her brain surgery for epilepsy cancelled the Friday before it was scheduled. Her facts were nearly identical to Ryan and this Friday will be the Friday before Ryan’s brain surgery. Her story brought more tears in fear of what might be to come and relating to where she is now.
The tears are flowing and it’s just barely 7 am.
Hoping work will be a distraction, I head off. But today is about transitioning to remote offices and packing up what we need. It makes me think about how I won’t be working ten minutes from the hospital where Ryan will be. It also makes me wonder if I will even be allowed to visit. More tears.
By lunchtime, Ryan sent me and posted a YouTube video directed to me. I haven’t watched it because I can’t stop crying over the thought of it.
It’s now a few more meetings later and just after lunch and the tears won’t stop. The surgery is cancelled…oh, sorry, postponed… by almost a year. February of next year. Let a new countdown begin. In the meantime, I am just fighting the tears.
I can’t speak for Ryan but for me, today I took a break. I took a break from worrying and stressing. Between the unknowns around Ryan’s surgery and recovery, the concerns of the money issues and fundraising needs resulting from the surgery, and the constant changes resulting in, what I call, the Coronavirus chaos there is a lot to create worry and stress.
I know it will all be back tomorrow as we prepare to work remotely, when we meet with a friend to talk about fundraiser possibilities, and as we go through our checklists to see what else needs to be done. Trust me, it’s all in the back of my mind. But I love this opportunity to enjoy the calm before the storm.
As I take the breath, relax a little bit, and think how I really have nothing to write about today, Ryan says to me, “I don’t want to freak you out…”. Well of course I’m going to freak out when he starts with that!
It turned out not to be such a freak out but a sad moment. He wanted me to watch this video of him talking to our son. I don’t know how long it is or everything Ryan says because I started crying not far into the video.
I watched enough to have it hit hard, this is really happening. Ryan is really having this surgery. The storm is coming. Now I just have to look forward to the sun to follow. I know it will be there, it’s just a matter of how long it takes.
Ryan has been on countless medications and they have all had side effects of some kind. And let me tell you, if anger was a side effect, Ryan got angry.
The combination of medications he’s on now hasn’t caused anger issues. Yet I feel like he’s been a bit snappy the past few days. I guess it could be the stress of the surgery a week away. Or I suppose it could be a result of him being tired from the side effects he had yesterday. Maybe it’s him getting used to the slight increase in one of the meds?
Sometimes, I wonder if it’s not really him but it’s me who’s angry. I admit it. I get angry when he is in the bedroom watching tv whenever he’s home while I have to force myself into a happy mood and play and care for the kiddo. (But really he is fighting the feeling of having a seizure or side effects from meds.). I get angry when i have to repeat a conversation that we just had an hour earlier because he was preoccupied with his phone. (When really it was a short term memory issue caused my medications and seizures.) I get angry when he falls asleep immediately at night and then complains he didn’t get any rest when I’ve been wide awake most of the night. (Really he isn’t sleeping soundly enough to keep from triggering a seizure and I sleep hard when I do sleep.). I get angry when he’s angry. (But it’s his meds.)
When it’s all said and done, I feel bad for being angry and feel bad trying to figure out if it’s me who’s angry or him or who’s angrier. Seven days to go and hopefully this won’t be an issue anymore because hopefully the surgery will be a cure.