Progress and pain, a lesson learned

I guess I’ve arrived at the point where I don’t really care about what others might be thinking and I’ll be vulnerable to the world by revealing what the new me, the current version of Rich looks like.

Well here ya go… This was me this past Monday, post minor surgery to place a permanent port line from my upper chest which connects to my jugular vein. Not to worry… other than being super sore I’m healing fine. This was an elective surgery which will help me to live more comfortably. My new ALS treatment requires IV infusions for about 20 days out of each month for the rest of my life. So this is what people do if they don’t want to get pricked for access to a vein every time. It will stay under my skin and then all I will have when it heals is a super sexy new scar and I can make up some macho story about it 😉

Stamford Hospital    01/29/2018

But really… if you know me well,  you know I would never have been caught dead posting a pic that I didn’t think made me look presentable on social media. Funny how my perspective has changed over time.

I’ve mentioned that I didn’t share with anyone about my diagnosis (other than my mom, who was with me at The Mayo Clinic) when I was diagnosed. Didn’t share with many for almost a year. I didn’t want anyone to see me and think of me differently. I dreaded having to go into work each day as I was progressing (at the best place to work ever!) using a cane at first. I was mortified and felt so silly. When the cane wasn’t enough, I had to use fore-arm crutches. I had a huge brace on my leg. I was falling down, having to get assistance to get up. What other people thought about me affected me way too much at the time. I couldn’t accept my own predicament. I was angry and scared and thinking “why me!”  What were people thinking? More importantly what were my kids thinking, my family and closest friends. This was a very real struggle for me. When should I tell people I have this incurable disease? How do I tell them? So much to consider! When it came to telling my family I knew it would rock their lives. This was not something to take lightly. I agonized over it, did research, sought wise counsel. In the end when I opened up and through all of the tears, Love poured in!

Before I started to feel the effects of ALS, I took living a “normal” life for granted. The days go by and you just expect the sun to rise each morning and this process to just repeat itself… forever. Until life lands an unexpected blow to the gut that changes everything. Once I came to grips with this, I finally got to acceptance. That’s when I was able to let the love of my people in. Sharing now with my large circle of friends, old and new has taught me a lesson I should have heeded long ago. I’ve had this old Dr Seuss quote on my Facebook profile page since the early days of facebook and on my myspace page (gasp!) before that. Even so, I didn’t quite grasp the power and truth of these wise words. I get it now, so here I am… power wheelchair and all. This is the new me.

Amazing…. I still feel that love pouring over me, from you all!

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