Stars Align in the Advocacy Sky

Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.


Saturday afternoon, after a sweaty mini golf tourney, I took the ferry and then subway home.  In my rush, I bolted out of the subway turnstile and ran up the 6 train steps.  I believe I made it 2 steps, well maybe 3, before …*SPLAT*.  Yep, I tripped.  Yes, I fell.  Oh I fell alright.  I fell HARD.  Splayed out on the subway steps (Ewwwww, gross, gag, ick, blech, more gagging, phewy, dirty, yucky), I pulled myself up and quickly continued onward.  I believe I told myself, “DO NOT CRY” maybe 15 times in under a minute, well that mixed with, “DO NOT TOUCH ANYTHING, YOUR HANDS HAVE NYC SUBWAY STEP COOTIES”.  Without stopping, I quickly walk/limped and tried to take an assessment of my injuries.  Right knee throbbing.  Right forearm and wrist not happy.  My Daddy toes (you know, the big toes) hurt and stung and hurt some more.  The right one hurt the most but the left one was bleeding.  I turned the corner to my street and the blood was making my foot stick to my sandal.  What the…???  The blood was coming from the center of my toenail.  More grossed out by the second.  Right toe pulsating.

bloody toeI arrived home and after antibacterial washing the hell out of my hands and considering drinking Purell, I investigated.  Yep, split left Daddy toenail right in the middle.  Ewwwwww.  BUT it was the right Daddy toe and right knee that felt the worst.

Fast forward.  Today I went to my podiatrist to get my orthotics that were ready a month ago.  Apparently they tried calling a phone number I had 10 years ago.  Nice try podiatrist receptionist.  You and your potty mouth have been confirming appointments with me on my current phone number for years.  Anyway, I casually mentioned my 6 train step run turned SPLAT.

feetAfter a bunch of, “Does this hurt?” Yep!  “Can you bend here?” Ummm kinda, questions with my doc, I found myself watching a video while I waited to see my Xrays.  I learned a lot of fun foot facts at 8:30 this morning.  I now know things about arthritis, plantar facitis and the importance of diabetic foot care.  The loop had already started playing again and I was back to diabetes and foot care being a team approach when my doctor returned and started reviewing my Xrays.

toe xray

It was a sweet moment.  I sat there reviewing my Xray with my doctor and cracking jokes about all the time I’ve spent at his office.  I’ve broken toes and chipped stuff quite a few times.  I broke my foot years ago and learned 2 major things.  1. Crutches are effing HARD and 2. NYC in the winter with crutches is a really crappy place that will make you unbelievably angry.  Anyway so back to my doctor.  Nothing broken.  Toe is just a bad jam and needs time to heal.  Yippee Skippy.

This all sounds very nicey nice but there’s a bigger part to this.  I actually paid attention to that foot video.  I half expected scary diabetes stuff.  There was nothing scary, just encouraging and stressing the importance of taking care of potential foot issues quickly and the reason’s why… decreased sensation, compromised circulation, blah blah.  it wasn’t scary though.  It was about staying healthy and having a good team.

I might have a small crush on my podiatrist.  He looks like Ed Harris, is extremely quick witted and even when my foot was a broken a mess and I was threatening people who stole my cab with my crutches, he always kept me laughing.  But there’s a much bigger reason that I like him so much…  he’s a T1D too.  He’s a 50+ year T1D.  I am drawn to these 50+ers like a moth to a flame or injuries to my feet.  Bad joke, sorry.

To my podiatrist: Thank you for being part of my team.  Thank you for being a 50+ yr T1D.  Thanks for having encouraging and informative videos. You may never truly realize how just talking to you gives me hope, but it does.  Rock on, or maybe walk/run on.

My view walking back to work.  Not bad. Keep walking.

My view walking back to work. Not bad.