Two weeks ago, I was given Botox shots in my lower legs to help stop muscle spasms, cramps and relax the over-tonation of my calves that result from my Hereditary Spastic Paraparalysis.  I got about 100 shots — just kidding, it was more like a dozen.   I have been worried about loss of sensation in my body, but boy, I felt those shots!

I love my neurologist, who is kind and patient and always gives me lots of information.  He doesn’t mind that I ask the same questions over and over, or that I go off meds then back on, then off again.  He has that rare quality of letting me have some say so, and some mood swings, in my treatment.  He figures a degenerative disease is a hard thing to deal with.  I know he sees patients who have a lot worse symptoms than I do, but he knows my struggles are difficult, too, and honors that.

When I leave, he always clasps my hands and bows, thanks me, and tells me to go live my life fully.  (He’s not from the U.S.)

Yesterday, I had my check up and we’re pleased with slight relaxation of my calves and that the night time cramps have been reduced (though my feet still twitch).  I’ll get shots every 3 months, and hopefully things will continue to improve.  Not to the point of actually walking, but a bit of the damage in my legs will be alleviated and I’ll be more comfortable.

Since my doctor is the kind of of person who spends quality time with his patients, he’s often late for our appointment.  I can hear him in the next examination room assuring or laughing with a patient.

I usually read, but yesterday I drew in my little notebook from the posters on the walls.

Life is so complicated and precious.  I think of how I’d not get any treatment at all if I didn’t have Medicare and Medicaid, so I’m so grateful for that.  The shots are going to cost thousands of dollars as time goes by.

Decades ago, I heard a doctor speak of the cruelty of numbers, how we try to budget the quality of life, and it is something that can’t be contained within the small world of economics.  It’s a thought that’s remained with me throughout my life.

Life doesn’t fit in a budget. Health, in all it’s manifestations, is priceless and precious.  I have a handicap that has reduced my ability to move, but very expensive treatments cause small improvements, relieve pain, and opens the boundaries that biology has randomly built around me.  I take part in the community, I cultivate beauty and delight for those around me.  I serve as an example of what health looks like, even when compromised, I am a healthy person.  Handicaps and illness are a part of life.

I hope we can all keep working to make sure healthcare is available for everyone.  We are all going to get sick, have accidents.  Upheavals in our health are lurking inside us.  Let’s keep working to understand this, honor this, and make sure everyone benefits from the medicine and care that is available.  Let us mind how we go.

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