mortimer’s life

I’d been itching to write a blog but was worried that I’d have nothing to write about. Fortunately (or unfortunately), life has gotten more interesting lately so I decided to give it a go. I’m dedicating this to my aunt who recently passed away. She liked to call her mother (my grandmother) “mortimer.”

My aunt had a very difficult life. It was often hard for me to enjoy mine fully, knowing in the back of my mind that she was suffering. She was so talented and bright but was dealt a blow at a young age and was robbed of the normal life that most of us take for granted. She was enormously talented and would entertain the family musically, and “mortimer”kind of describes her character. She was a cat lady. She was eccentric. She loved to wear red and purple and she was not a small lady. She definitely left her mark on our family and community despite all her troubles. Even her funeral will always be remembered as a spring day in the dead of winter.We remember how she brought us to tears with her comedy. She would sing and play the guitar. Her most memorable song which I’ve searched YouTube in vain for someone who can sing it like she did was “Shootin With Rasputin” which she sang with an authentic Russian accent. It was a catchy, funny tune that got the place rolling. The best I can do is find a few verses of the otherwise never-ending  lyrics which go like this (the words are different in every version):

Palace of the Czar (Shootin’ With Rasputin)

An intimate friend of the Czar was I
An intimate friend of the great Nickolai
We practically slept in the same double bed
With me at the foot and him at the head

Now all that seems distant and all that seems far
From those wonderful nights in the palace of the Czar
I went shooting with Rasputin
Ate farina with Czarina
Blintzes with the princess and the Czar
We were sharing tea and herring
Drinking wine and never caring
Dancing all around the samovar

An intimate friend of the Czar all my life
More intimate still with his pretty young wife
We practically slept in the same double bed
With me at the foot and him at the head

Then one bloody day revolution broke out
I went to see what all the fuss was about
Now here is the story, as it seemed to be
It was clearly a case of Lenin — or me.

Yes the Bolsheviks came, kicked me out in the cold
And all I had left were some diamonds and gold.

Then, something about -they left me penniless , but the czar-he was Nikolas!

Anyone who heard this catchy tune, sung by my aunt at her best, was brought to tears of laughter. We all miss those times and wanted to recreate the memory.

Mortimer’s Life will be about my journey. I have big dreams of big things that I was hoping to accomplish-new business, travel in our RV, my children-teenagers on the cusp of leaving home… but I’ve been dealt health worries instead. Instead of being able to plan all these dreams as I turned 50 this year, I’ve spent the time in doctors’ offices and working to keep my health insurance. Each time one hurdle ended, another began. I have sarcoidosis and I guess I’m lucky that it only took 17 months to figure that out. The cancer that was found incidentally pales in comparison to the ramifications of the sarcoidosis. But I’m a happy person who loves life and this won’t knock me down. There are two of me right now-the normal me who goes to work, mothers 4 amazing children, husband and dog and the sick me who shows up dutifully at the sometimes daily doctors’ appointments for fruitless visits and fruitless tests. Before all this an MRI was such a big deal to me, now it’s as frequent as blood draws! And the radiation from the CT scans and PET scans-if you’re not yet sick, it will surely make you sick so that eventually something WILL show up!

Don’t get me wrong- I’m actually grateful to my doctors for trying to figure out what’s wrong with me. Why am I privileged to have access to our great medical system while so many others are not? I’m truly fortunate.

I plan to continue my sarcoidosis journey in future posts. Some posts will be about fun stuff like traveling in our RV. I hope my stories will inspire others. Sarcoidosis was once considered a rare disease but it seems to be much more widespread now. Still, most people have never heard of it and most doctors have no idea how to treat it. So my husband and I now travel to places that understand it-6 hours there and 6 hours back. I know that I appreciate reading about others with this illness and hope that my sharing will be useful to someone-or else just interesting! Thanks for reading…







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