I haven’t blogged about it yet because I’ve been going over in my mind how I’d tell the tale. Then Kelly posted a travel query on Facebook and both Jeff and Jeanne extended the invitation to come to Atlanta. That meant it was time to tell everyone what’s going on with me. Well, that means I’ve found the words I needed. Anyway, I buckled down and really looked for them, and there they were!
Okay, first off, what I’m most concerned about is that the written word doesn’t have the inflection the spoken word does. I am not gloomy, sad or depressed. I hope the normal Nani optimism and smiles are clear in my writing. This is the main body of the letter I sent to friends on Facebook:
The plan at the beginning of the year was that I was getting an MRI of the lower back and then probably surgery. Rehab and all, I’d be good as new by Christmas. Well, the neurosurgeon had me do some tricks which I couldn’t do, like standing with my feet together. It was his opinion that, bad as my lower back is, it isn’t the problem. The lower back doesn’t screw up balance. I had an MRI on the upper spine and neck, looking for a pinched nerve. No pinched nerve. Then a CT Scan, looking for a benign, and the neurosurgeon specified benign, brain tumor. That was the worst for me. Benign or not, brain surgery was a scary thought. I even refrained from coloring my hair while going through testing, if you can imagine me giving up that vanity! I figured if they did have to do bran surgery, why pay to color it and then have it shaved off? Well, good news, it’s auburn again now. No tumor.
What the CT Scan did show was that my cerebellum, the part of the brain that controls motor function, is too small for my age. The neurosurgeon told me that there was no one in Toledo qualified to diagnose me and sent me to Cleveland Clinic. That’s the number four hospital, not in Ohio, but in the COUNTRY! Talk about a happy Leo ego! Best in the state, fourth best in the US, my brain is pretty important, huh? I met with a neurologist there who was awesome! He looked at my CT scan and MRIs with me and he pointed out exactly what I was seeing. Yep, my cerebellum is too small for the space it’s supposed to fill. He says the symptoms indicate a probable genetic condition and asked all kinds of questions about my family. Yanno, Mom had some balance issues and fell a few times, but she had the heart condition and diabetes so it fit together. Since the first of the year, I’ve been tested for just about everything, including a chest x-ray and EKG last week. My balance issues fit with nothing!
I also had a brain MRI last week. MRIs suck and I really am tired of those! I’ve also had more blood drawn in the last month…I look like a junkie with all the tracks! Anyway, I go back to Cleveland Clinic next month to follow up after the brain MRI and blood work. The doctor seems pretty positive that it’s genetic and he’s trying to narrow it down to exactly what it is, for me, what to call it. He has already brought up a special walker for neurological patients and use of the wheelchair. This is not life-shortening, but it is, unfortunately, life altering. Well, it’s way-of-life altering.
The cool part is that I can now blame my medical issues for being so long between jobs when I get back into the job hunt, plus I’ll have some new computer certifications. I’ll be fully qualified for a sit-down job, like telephone help desk or web design and my end of interview sale can be that they can meet a quota and I have the opportunity to make them know they made the best decision they could. Okay, the job hunt is probably going to be the beginning of 2013, when my diagnosis is official and my trips to Cleveland finished and when I'm finished with enough classes to take the certification tests.
Right now I’m working on getting used to things that won’t be changing and adjusting to them. I’m doing okay for the most part. But hey, go with me and we get good parking, guaranteed seats at most places and while that walking part of my brain appears to have shrunk, the thinking part is still working well for smiling, laughing, joking and in general the stuff I’ve always done. I may have to rent one of those scooters to go apple picking and I’ll have to learn how to dance in a wheelchair. :)
So, there is the current story in my world. It’s a new challenge, but it’s also a new opportunity to seize the rainbow behind the clouds that appears when I shine my sun on them. I’ll keep the Chronicles updated whenever it is that they can give my “thing” a name.
Don’t feel sorry for what I don’t have a choice about. Be inspired by what I am choosing to do about it.