I think that I finally get it. While others may have "gotten" it a long time ago, I now get it. Instead of napping, I found myself laying in bed, composing this blog entry. I kicked off my nap with the thought, "What would Dr. Schmidt say?" The question being, "Did you know that I wouldn't be able to work again".

This question has plagued me for months. I have bounced around from walking straight back into the job I left behind, to starting a new job., and everything in between. I have tried to convince myself that I am now better able to handle stress than I was before, and that I would no longer take on any job with my full being. I have considered working part time, and tried to re-work the job that I left behind to better suit my abilities.

But I continue to find myself empty handed. After more thought, my latest and greatest scheme deflates right before my eyes. And now I realize that the reason for that is because "nothing" is the most realistic. As I have said from the beginning of this, I wish that I had a more visible disability. Instead, I get fatigued, I have trouble breathing, and I have trouble swallowing food. I have trouble making decisions, and making plans. And all of this gets worse when I am tired or stressed.

On Friday (or was it Thursday?) the wobbles peeked out from under the glowing haze of steadiness that I have been enjoying for weeks. This has totally pissed me off, but has also made me realize that "wobbles" are just going to be a part of my life. Take every minute as it comes.

So I am going to try to accept that I will not return to the work force. This has been a difficult thing for me to do so far, because I got sick just when things were taking off for me. I was in a place where my name was known to suppliers, my eye was something for my employer to trust and invest in, and word of my talent for creating individual and stylish spaces was spreading.

I'm not going to say that I feel "robbed". I've just been directed down a different path. I am no longer able to steadily earn a livable wage, but I am still talented. My plan (and hope) is that I can continue to nurture my talents and passions, and then share them in an unofficial arena.

I have always known that this disease would not get the best of me. Unfortunately, I have assumed that I would have to make money despite the disease. But that isn't what this is about. I have to respect the disease: acknowledge that it's there, as well as the limits that it has given me. I also have to respect not only the advice that I have been given on how to best keep the disease symptoms at a dull roar, but I have to respect my body, including my abilities. Abilities are not abilities just because they bring home loonies.

And what do I imagine that Dr Schmidt would say? He would say, "Emily, given the scope of the attack on your brain, we are surprised that you don't have more problems. What you are able to do is beyond our expectations, and no, I don't expect you to be able to work."

I hope that I don't deflate this one!



Ladyfingers said...
April 8, 2008 at 10:53 a.m.

Yes Em it's a tough decision to make especially given what a great place you were at with your designing when IT happened. With this realization and acceptance you are telling IT that you are the one in control. You can now take back your life. Your talents are still there. IT didn't rob you of those. Channel them in a different direction.
I was with you the day Dr. Schmidt
gave his news. I remember going down the hall in the hospital behind you and Jason and the Dr. I heard him saying "we can't believe you are walking and talking. Most people with an MRI that looks like yours are in a vegetative state". All the other neurologists were flocking to look at the MRI of this woman who should have been in a coma but wasn't. I remember thinking "is he on a cell phone? Is he talking about my daughter?" I felt sick. You did too as you walked down this maze of halls but it was because the world was spinning. The Dr. kept offering you a wheelchair and asking if you were alright. And now you ask what would he have said about you returning to work? You know the answer. Press on my dear. Live each day to the fullest even if it may be a day when you can't get out of bed. Put the past behind you. There is a present and a future to live.

Mom XO

Little bits about my life with MS

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