Thursday, March 19, 2015

Word games

My Gram loved crossword puzzles and just about any other word games. Frequently, she'd be seen walking around with a page torn out of the newspaper, that she had folded into a 4x6 quick view of her puzzle. She always carried a sharpened pencil with a GOOD eraser, as she shuffled around the house mumbling about possible answers.  This was not a time to interrupt her with any type of request, as she was not a patient person when she was focused on getting her words just right.  

I sure miss her. She was definitely our 2nd mom because she lived with us our entire lives except short tours of Florida to visit our cousins. Just before she died of cancer, she completed a short poetry book. In the introduction she spoke about how it wasn't the diagnosis of cancer that upset her as much as her inability to write.  

Well, in short, today is a rough day as I was reminded of my Gram during my speech pathology appointment. I'm not sure why it's hard, because I knew these things before coming here.  I knew I was losing my vision and I was diagnosed with Multiple Sclerosis back in November, 2013.  I've just been working very hard to prove otherwise, on both counts, ever since: to no avail.

David and I had a lovely time with each other today, while waiting for a stand-by appointment with the headache specialists.  The appointment never materialized, as we sat at a spectacular panoramic window overlooking beautiful downtown Rochestor.  It was worth the try and hopefully we'll have better luck in June when we return.  I'm really going to make it a priority to nap each day since I'm apparently not going to have any treatment for my nightly headaches.  I've had them for two years.  What's another few months - right?  When I woke last night with a pretty terrible headache, after my typical 4 or so hours, I told David I felt God wrapping me up and reassuring me because I was going home untreated. I felt the deepest sense of empathy for the many Mayo Clinic headache patients who have filled their appointments all the way through August.  It was heartbreaking to consider how many people suffer from such debilitating headaches, that even mine, which seem quite severe, are not sufficiently bad enough as to substantiate an appointment with these specialists: not even in June. 

The appointment with the Speech Pathologist was tough. I like to do well on tests and I wasn't familiar with theirs.  I cheated on my eye test at the DMV: just sat there listening to everyone read out the letters so I could pass the vision test without my glasses.  Cheater, cheater, pumpkin eater.  Well, there was no cheating on my speech pathology assessment: apparently.  We played word games for over an hour and she even called in one of her colleagues to substantiate the diagnosis: Ataxia Dysarthria. If you google that, please add the words "Mayo Clinic" to your search and you'll get the brief overview, without all the drama.  By the conclusion of the appointment, I was admittedly a little teary. Like my Gram, my words are very valuable to me.  A loss of them, a little at a time, is grief worthy. 

It's the synthesis of all of these separate diagnoses that have resulted in a discharge diagnosis of Multiple Sclerosis NOS (not specified).  Still, I praise my Lord, as the bombs reign down.  He sent me my knight in shining armor to bring me to the most shared beautiful view on Earth.  I'm ok. We're ok. Hell, even Leslie is ok.  

It's all ok.  Just like Sydney and Aubrey have said all along, "No matter the outcome, it doesn't stop at MayoNNAISE." Please pass the ketchup.  I have been so blessed to have had the opportunity to be served by these brilliant people. David commented how it would have taken us 6 months or more to have accomplished what we did in just 7 business days.  What an enormous relief to have saved that amount of stress.  Praise God, indeed. 

Leaving here, I will continue to refuse to live in a world that is diseased. I have always been reluctant to share any of my health history because I don't want to be viewed through a diseased lens.  I share it now, so future generations might have a better outcome.  I will have surgery next week to remove this spinal cord stimulator and that will afford me the ability to have future non-complex MRI's and ongoing excellent healthcare.  I'll be back in my water aerobics class in no time and traveling to Austin to search for a Winter home. Ok, I'm just joking about the winter home, but I will definitely be increasing my visits to see my kids and my friends. I want to SEE them every chance I can get.

This is the haiku my Gram wrote derived from the Easter devotional she was reading. These words stood out to her as she realized they formed a perfect Haiku. Her words returned and she finished the trilogy shortly thereafter.  From, Come Into My Heart, by Jean Fox Holland and Our Lord, Jesus Christ:  

Why are you troubled? 
Your Lord is Risen indeed!
Go ye then in Peace!

Abba, Father!


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