they say that people with epilepsy have all sorts of neurological is-sues, and maybe there is something to be said about that.

today i had the strangest feeling that i had been plucked out of somewhere and placed in the middle of a novel, or a life that i knew of, but wasn't emotionally connected to.

it started when a taxi driver took me the long, wrong way to my neuro appointment today. that frosted my socks, and as i was explaining to him what he could have done and he was being silent, shruggy and rather chintzy with the apologies, i felt like this was my first time having a cross cultural experience. my vision blurred a bit, and the sense i had was, "this is hong kong". yes, of course it is hong kong, it has been hong kong for nine years...why only sometimes do i get this realisation?

up to the doctors office, and after the prerequisite waiting time that is possibly meant to reinforce that you are seeing a SPECIALIST and simply paying $140usd isn't enough, to fully appreciate the neuro's education and experience you should wait to see him...i was ushered in.

i was polite, and as he pottered about my eyes feel (as eyes would) on my file. and to a letter written (luckily?) in english from someone i am not sure whom, stating their belief that my mother, my mother!!! needed to come over to hong kong because i was not equipped to care for four children. the letter was written in 2004.

and who knows why, this set me off on a little teary tangent. i mean, tears didn't plop on to his expensive desk, but i felt as reduced as someone on medication that makes her gain weight can feel.

i thought i had reached a detente with epilepsy. i have never been "angry" that i have it, sure it is an inconvenience, but if i were to do a check and balance, i have a great life. i wouldn't trade it, as much as i dislike my inability to drive and really commit to an event. i like it, and i like most of the people in it. but this letter made it sound like i had a crap existence, subsiding only with the assistance of others. possibly, a burden?

reading about how my husband although very helpful is unable to watch me and the children all the time, the unbidden thought: would mc have been better off if he had stayed with his first wife?

i paid to feel this way?

i suggested the new drug i wanted to try, and the dr basically said no. my plan won't cover it, and it is a new drug, so therefore, (ready for this stunning logic), there are no studies of the long term results.so instead, he added a second drug. and joy of joys, the common side effects of this one are skin rashes and weight gain. so here i go.

and then that was it and i went outside to collect my new meds.

it didn't feel as powerful as i wanted it to, but then again, it might work. the doctor had the nerve to tell me i was no where near fat. i got a little angrier when the receptionist said they only accepted cash, and that the drugs were so expensive i had to run out to a bank machine...bleck.

i then went to a us import goods store where i can buy things like 1lb of dreft for $50 usd, and seeing the items took me to a flashback of shopping in the states, in those huge supermarkets, and here i was with a teeny cart massaging my way around counters. i remembered being in there freshly pregnant with the triplets because this was where i could buy the chocolate slim fast shakes i was drinking with my meals. it could have been any day, any year.

outside, i was suddenly back in hong kong, and outdoor marketers were holding a cooking session promoting their latest tofu fry-er. the smell was asia, the crowd and their noises, the congestion was asia. being pushed against another person and them not minding, because it happens so often.

i feel displaced today. i wanted this to be a powerful day. frankly, it wasn't.

but the good news is, i had more staying power than i thought i did. i wanted to crumple up with a john irving book and read about someone else's life rather than being part of my own. instead, i went home, picked up my kids from their cots, danced with jasper and carys to a favourite moby song, and did some work. took a call from someone i really would have rather not spoken to. basically, i dug my heels in deep and said, "i've gone down as far as i want to go."

epilepsy takes away my power, choices and control.

today i exercised that power, made a choice to not get tumbled over, and to keep on with my life. because as i have said before, it's a good one.

i'm feeling precious, but strong at the same time. i could cry in a minute, (but won't), but at the same time, i feel certain. and that my friends, when you most fear uncertainty, is a v. good thing and i am glad i chose to be the enduring tess i know i am. i needed this.

Comments

[lyns]

At least they didn't put that you "Struggle with obsitiy" in your permenat chart on EVERY page!!!!! (like they did with me when I had Keighely!!!)

You are one of the most amzing women I have ever met...I would leave your apartment after hanging out with you for an afternoon feeling so blessed that you were part of my life... feeling empowered and suddenly capable of whatever...you are an encouragement to so many...so many with infertiity stuff, IVF stuff, triplet stuff, parenting stuff...and even epilpsey stuff... Henri Nounen (now-en) has a book called the Wounded Healer...basically says that we are not perfect...but out of our "wounds" whatever they are we can still be effective ministers of the Gospel... and trust me Tess what ever your "issues" may be you are effective....whatever/however you feel you have made a HUGE impact in this world for Christ... and mc wouldn't trade you in for the world..(I've seen the anual v-day banners!!! I've seen the look of awe and gratitude in his eyes when he catches your eye from across the room...I've witnessed the love and affection and adoration he has for you and your four kiddos...i've seen him dog tired and still find joy in his family and wife!!!!)

I love you and i am glad that you chose to stay on top today...I am so proud of you!!!!

[Monica]

Your posts always touch my heart. You are an amazing woman, wife and mother. MC and the gang are unbelievably blessed to have you in their lives. I have a dear friend who just gave birth to her first child this week...and was diagnosed with epilepsy while pregnant with him. She has been really struggling with a lot of the feelings you expressed here. I'm off to refer her to your blog. I think you are just the beacon her newly darkened world needs. Thank you again for sharing yourself with us.

[Tina]

Awwww, Tess. I'm sorry the day was such a struggle. However, you did such a powerful thing. You didn't relinquish your power to someone else. Doctors are experts at making us the lowly paitent feel less. Because they "seem" all knowing, all powerful.

I admire the way you didn't just hand it over, you took the hit and kept on going. Some days, that's the strongest most courageous thing a woman can do.

[Jill]

T - what an awful day. It started out with so much promise. I'm grateful you shared it. I don't think I'm the only one to say how much I admire you. You showed such courage and strength when such a culmination of disappointments nibbled away at you. You did NOT give in and you persevered. That is what sets you apart and shows your charm and character. The day is over, and a new one has started. Try the new medication, some side effects don't affect everyone and it may work for you. If it doesn't - you can keep asking for something else that balances what you want. You never know. I wish I could give you a hug - in fact here is one (XO). You are wonderful, simply wonderful.

Remember great love and great achievements involve great risk.

"A man only learns in two ways, one by reading, and the other by association with smarter people." --Will Rogers

[Mo aka Maureen aka M aka grandmother :-)]

Your last two blogs have been amazing, sweetheart. Your pro-active choices send a message of encouragement, hope, attitude, and never-say-die! Am so proud of you and love you to bits.

M xox

[Dad]

And now you know why I am so proud of you and love you so much.
Hugs and kisses,Dad

[joeinvegas]

It's up to Charles to decide what he thinks best for him. Looks like he made his decision. I don't think the kids would change either.

[Charmaine]

Hummm, I am sure glad we didn't have a phone conversation earlier today! HA HA.

I can tell you this: if MC would have been better off with his previous wife then I WILL TAKE YOU AS MY WIFE IN AN INSTANT. And I won't even ask for a bj! However, I don't think he will agree to giving you to me.

Love charmaine

[Maggs]

Oh Tess, I am sorry you are hurting. You have a wonderful family and husband...I've always envyd your life.

Have you tried Lamictal? I'm on that, but it acts as a mood stabilizer for me.

miss talking to you, lady...always around on email.
God bless

[Boulder]

You wrote you'd wanted it to be more powerful - but it WAS. It was a very powerful day. I think you lived your day in a very graceful way, despite some challenges that would have left others in a rage or in a funk.

One day, I want you to demand to see that letter and to see who wrote it. And then for you to decide whether it is worth challenging them on their unsolicited interference or not. But you should know who this person is, this person who has judged you without understanding who you are and what you stand for each day.

I want to grow up to be like you some day. Full of grace.

xoxo

[Auntie Pammie]

Once again, you will never know how much I admire you and respect you.
Love your sis xo

[SheilaC]

Way to go, Tess! I hope the new meds will help. I admire your courage and perseverance, and your writing.