“Go back to that place…” he whispered through the phone.
“When we were talking the other day and you said- ‘f**k them, f**k this, f**k Epilepsy; I’m going to figure out a way to make a difference and make myself happy… and I saw the woman I’ve always known. The one with fire and determination and a badass attitude. You can be that again.”
Then he said- “You know that I’m right…”
Yep, I know. I know he is. He always is. My sanity, my “life coach” on days I can’t see straight for being so depressed, my normalcy, my savior along this journey.
And so this post is a letter to him. To all the unsung heroes and caretakers that bear the brunt of a disease they “acquired” by association and through……….… love.
When I think of what this disease’s put us through and our roles in life as a result, I picture the countless times you’ve gently carried me in your arms down our hall and laid my tired body on the bed. Curled around me and wiped my tears as I blubber incoherent apologies for doing this to you, to our family, again. Or the moments you lay facing me, showing me how to breathe while I attempt to calm myself and stop repeating “I’m scared, I’m scared.” And last, I always think of what your face must look like when it sees mine contorted, heaving, seeing the foam, hearing the hissing and watching my limbs twist in some sort of gory fashion. Or the absent look as my eyes twitch and my arms clench in smaller seizures. That’s what I think of- all the ugly you turn tender. All the gruesome you make beautiful. All the crushing fear you make bearable. You give so much in constantly taking what I can’t carry.
And you do it all without complaint, recognition, and in my eyes, reward. You bury your wants and needs beneath mine, catering to my exhaustion, frustration and pessimism. For years, you rarely see old friends, attend social events or take a moment to enjoy the hobbies you once loved… You are too busy saying no to others because you’re constantly saying yes to my needs, my health, my unpredictable. Our unpredictable. This part of life neither of us ever thought we’d navigate. Yet, what I find most thoughtful is you never put it on me; I’m never to blame for a cancelled or missed something because you always put it on yourself- your work, your other responsibilities. You keep my most unbearable and embarrassing private at the expense of what others may think of you. And I know others’ opinions don’t matter in the grand scheme of things… but it just shows your conviction in your love for me and the commitment in our fight against Epilepsy. And I never have to ask.
There are days I can’t fathom how you don’t put your fist through a wall or simply crumble to the floor and give up, give in. I know you feel the pressure in fulfilling the stereotypical family role; the provider, the husband, the father and now an on-call caretaker. And I’m finally seeing the cracks; the weight’s too much, the shoulders too heavy. Although you don’t share it, I see it. I know, but others don’t and I think they should understand the depth of your responsibility, and mostly, sacrifice, because I am humbled by the lengths you go to for my health and happiness in disregard for your own.
Remember the other night at the charity event, when the Mother came on stage with her son who battles a rare disease and attempted to capture their world, their struggle, in a matter of minutes? As she spoke, I cried for the little boy, but mostly for the Mother and her finite ability to express the infinite pain she must endure… Because I can imagine the burden she carries watching her son suffer, the heaviness on her heart and the fear of the unknown that suffocates her optimism for the son she treasures. I know those wounds because I know you and your love for me… your willingness to stay up until 3 with me and wake up at 5 for work. Your willingness to come home from a long day and play both Daddy and Mommy while cooking dinner… Most of all though, I cried for her because she can’t always cry for herself. She’s too busy gluing all their broken pieces back together. She’s my you.
One day, when we aren’t sick anymore, I promise to be the woman you married. The fire-y, confident, powerhouse you watched walk towards you that day and the one who playfully challenged you every moment after. I will be your equal, the source of your laughter and the pillar you deserve once again. But until then, know I love you beyond measure. Beyond words, beyond what I imagined possible when we sat across a dimly lit table in that tiny restaurant on our first date… shyly smiling at each other.
My words are so utterly insufficient… But I can say this- I promise all these broken pieces will become our beautiful mosaic. The one we created together, but more importantly, the one you so painstakingly held together just for me. For the woman you once knew and the one I will be again.
Never in my life have I been so grateful and so fortunate as in this moment with you.
I love you.
I really needed this today. My husband has Epilepsy. He has been on 12 different medications with no control. The medicines help because he had 26 in a few days when meds were lowered during an EEG.
I take him to work each day. He works 50-60 hours days and loves it but sometimes the stress and long hours seem to cause seizures.
He had invasive electrodes placed during brain surgery on December 15th to see if he could have the next brain surgery to remove seizures. He had 26 seizures. The last seizure was huge..he couldn’t talk or form sentences for 6 hours. IV Ativan was given and 6 seizures still occured in the night.
The stay was supposed to last about 6 nights…the 7th day they brought discharge papers and then his temp spiked again. His eyes were hurting, he had thrown up numerous times from the air in his brain and brain fluid had leaked all over him. He was weak, sleep deprived, and exhausted. I felt the same way mentally. The doctor came in and said that he thought he may have bacterial meningitis from his brain having an airway with electrodes. There was a 3-5 % chance that would happen…the lumbar puncture showed he did.
14 hours of him laying in a bed lifeless getting iv antibiotics, 5 more nights in the hospital, Christmas Eve, day and our anniversary in the hospital…and we finally headed home. He is a candidate for brain surgery now with a 70% cure rate of being seizure free.
He had to have antibiotics every 8 hours. Home Heath taught us and he began treatments…6am, 2pm and 10 pm daily. A week in and he was extremely sick. His temp was spiking and he was shivering. 3500 maxed out on Tylenol and he felt better…he fell asleep and I headed to work to make emergency sub plans. Christmas break was over and I needed to make plans for my kindergarten class.
3 hours later I came home and he looked deathly. His temp was almost 104 with all of that Tylenol within 16 hours and still that high. I freaked out and called the doctors. No answer and no appointments until the next day. We had been to the local ER but I knew it was time to hear back to Vanderbilt 4 hours away. I packed a fast bag, carried stuff to the car, made plans for the dog, helped him out, packed IV meds, Epilepsy meds, meds from surgery discharge and headed to Nashville. The doctor called me on the way down and said he wanted to admit him immediately. We got there and waited for 2 hours to get a room. The temp spiked up and shivering started again. In a nutshell he had an allergic reaction to the IV meds.
3 more nights in a hospital and we headed home with a new IV med plan. He felt better but this kind made him feel like he had the flu and he vomited continuously on the way to our next visit.
Two weeks later he had an allergy test. His arm started turning gray and the allergy doc saw it. She ordered an ultrasound and he had blood clots due to his PICC line. Luckily IV meds could be stopped and the meningitis was gone.
Now he’s on blood thinners for weeks to months. He may have to cancel his March 10 WADA test and March 30th brain surgery because you can’t be on blood thinners. We have to wait for the next ultrasound results at the end of February.
He returned to work but he said his brain doesn’t remember like before. He has to relearn and use reminders.
This whole process has SUCKED. He’s tired, im tired and we are sick or Epilepsy. Your article really hit close to home and made me feel a huge connection.
We are going to do so many things when WE aren’t sick anymore. He’s getting a sailboat. We started a savings for it. We are finally going to go on that honeymoon. I’m going to take a nap in the car while he drives when the seizures are gone! We are going to buy a house and have kids. We’ve been together for 4 years and married for 2. I can’t wait! Thanks for the article. It made me have hope and strength for whatever comes our way.
Thank you Lisa! And yes, it so is… ☺️
Beautiful. :) It’s good to have someone on your side, isn’t it?
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