It was hot by Seattle standards. People, birds, dogs and squirrels were playing, lounging, laughing, and soaking up as much vitamin D as we could manage. To feel the sun on my face was truly glorious! There are weeks at a time (or longer) that we don't get that pleasure. My cold, cold bones were giddy.
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| Thank you for the picnic basket Meghan & Sean! |
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| Thanks for the blanket Mary & Kevin! |
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| We were doing great until the massive grey cloud started creeping in... |
We only lasted about 30 minutes before the first raindrops started. We packed up, headed home and enlisted Eric & Laura to celebrate an indoor picnic on the couch. We turned Skyfall into a five hour movie, it was hilarious and perfect.
It was nice visiting with friends that we've known for so long. There's no need for pomp. In fact you don't even need jeans, just sweats :) After the movie as we were catching up, Laura shared a story about a friend from high school, a teammate from volleyball, who had epilepsy. Apparently, she would sometimes seize in the middle of games. I was blown away! I have been living in fear of seizures. It was as if a seizure was the end of my world as I know it. After this last seizure, I had been feeling like my soul is trapped in an unreliable, faulty physical body. I've been very sad, wondering if my life will be boring, if I will be relegated to second rate sleepy activities. I was not born to sit. I was not born to live in fear. Hearing from Laura that when her teammate had a seizure it wasn't that big of a deal, that they all knew what to do, how to handle it, and that it didn't mean that she had to sit on the sidelines, literally sparked a flame in my heart. I physically sat up straight, started smiling, and felt like those 10 pesky pounds had evaporated from my frame. I mean, think about it - who wants to live on the sidelines? What's the fun in that? I want to be out kicking ass with the team! When people have seizures, almost none of them need medical help (unless there is a rare accident or special circumstance). I've had medical attention for my first one because I was driving and I didn't understand what had happened. Then the second time, again, I was confused. We now know exactly what to do.
Last Monday night when I had my seizure, Dan gently woke me up and told me what happened. Then I rolled over and went back to bed. What I need from my friends is to not be afraid. And, if you are afraid, that is okay, but just talk to me and I'll make sure you won't have to be alone with me. I am very careful to not push my limits, but this is not an exact science - there is so much that we don't know about what causes seizures. You can do everything and still be surprised with an episode.
I do not want to make my friends uncomfortable, but I also do not want to sit at home. I want to live. After this last week when my girlfriend suggested I should stay home from the run and pub crawl, then I had a seizure, I wondered if my physical state was deteriorating. I worried that my good days might behind me, that things would decline with further seizures. I was terrified that my life was going to be riddled with exhaustion and less and less invites from friends. A double whammy. Laura's story perked me right up! All I need to hear is that one person persevered, then I'm inspired and I want to join them in conquering the world!
It's nice to have a new perspective on the same situation. I can't tell you enough how relieved I feel. Even though I'm not drinking coffee, or alcohol - or eating sweets (other than fruit & 70%+ dark chocolate) - I still want to see my friends. I can still hang out at a bar for an hour, or meet up for desert, and I'll have a tea or a sparkling water, then I'll go home and rest. I believe I can have the best of both worlds.
I am so glad to hear that! I hated the idea of you feeling like you can't be social!
ReplyDeletehahaha Miss Brooks you have always been an active child even while you were in the womb. There's nothing that will keep you down. Nothing.
ReplyDeletemy love to you forever and ever
Amen (or is that Almond..as you would say when you were a wee babe)
su mamasita
Jess,
ReplyDeleteLooks like a great picnic! Keep up the good work. It's hard and challenging but remember that you are healing your body with each bite of food you are taking. Think of food as medicine--the power to fuel healing and give your body energy it needs to fight. I forgot to mention that matcha is extremely potent for brain tumors, so drink a cup every day! That's what I do instead of my regular green tea. Also soy has a lot of things in it to fight brain tumors so drink a little soy milk, eat soy nuts, edamame, or tofu if you can. I try to get some in each day but lately have let that one slide. Do what you can and then try not to worry about the rest! Your fellow fighter who doesn't want to sit on sidelines either, Jessica
Jess - when I was in my twenties and living in Phoenix I worked with a guy that had two seizures at work. It really scared me and after a couple of months when he came back to work I was deathly afraid that he would sit near me and I wouldn't know what to do if he had one. I even prayed that they wouldn't sit him near me. Well you know what God did, he put him directly across from me. Not only did I overcome my fear and become friends with him I ended up being his carpool buddy since he couldn't drive. God taught me a good lesson. Fear is worse then reality and we can overcome these roadblocks. The more that you share with your friends the better off you and them will be. Best wishes, Jim (Pewaukee, WI)
ReplyDeleteOh my goodness, so much wisdom in all of these posts! If your friends are reading these, maybe they can see that seizures are not the end of the world. Possibly they will see that you can still be a part of their world, and that life does go on even with these interruptions. We all have something in our lives that is not convenient (mine is migraines). I will pray for these sweet friends to accept you wholly and completely, and for you to accept their decisions on what they can deal with, and are comfortable with. I pray both sides can stretch their boundaries, for with love, all things are possible!!!!!
ReplyDeleteJust a quick note to say, keep up the positive outlook!!! Life has it's ups and downs, but if your glass is always half full, you can see and feel more of the ups it has to offer. My dad taught me something so simple, but true, "life isn't perfect". I accept that and go on my merry way trying to do the best I can. I have had my share of heartache and loss, but my mission is to look for new joy each day! Life is beautiful, and precious, and all of our days are numbered, and I want to use mine living fully, and loving greatly. I thank God for your life, and pray for you that your sweet smile continues to light up so many lives:)
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