So…it started with excruciating pain in my left index finger. I’d inadvertently bump my finger and a lightning bolt of pain would shoot right through it, leaving me on the verge of wanting to vomit. I couldn’t bend my finger to make a fist. Then I developed pain in my left thumb on the crease in the palm of my hand. It hurt to try and fold my thumb towards the palm. Eventually, the pain made it impossible to grasp and carry something as simple as a coffee mug. This might not have been such a big deal if I were right handed, but as someone who is ambidextrous, there are certain tasks my left hand does, not to mention I’m an artist who works with her hands. It’s been both painful and frustrating.
I was cooking pancakes one morning and suddenly the room tilted at a 45 degree angle. WOAH! That’s not right. It stayed that way for a good 5 minutes, so I hung onto the counter and kept cooking while I waited it out. When it was over, I mentioned it to my husband. I have had several episodes of what I like to refer to as “drunken sailor” since then. Fun times!
Now my left leg has developed pins and needles. I was adaptive dragon boating the other day and when it came time to get out of the boat, I couldn’t stand up. I ended up kneeling on the dock till I could wake my leg up enough to finally stand up. Since then, I am walking stiff legged. I’ve lost power in that leg and there are times where I feel unsteady on my feet and disoriented. My proprioception (knowing where my body is in space) seems to have gotten worse. Last Wednesday, my physiatrist (a rehabilitation physician who is a nerve, muscle and bone expert who treats injuries or illnesses that affect how you move) absolutely insisted I get a cane. I was not ready for that. Not by a long shot.
This is just a small snapshot of what goes on in the life of someone living with NMO. This rare disease manifests is so many ways, all of them devastating and destructive. Every day we deal with the fall out of our bodies betraying us. Every day is a battle most people know nothing about.
This Sunday is the third annual NMO 5 km walk/run/roll at Rocky Point in beautiful Port Moody, British Columbia Canada. It’s the only event like this in the world, dedicated specifically to NMO. I will be there, along with my fellow NMOers, allies and local researchers and clinicians raising money and awareness for this terrible, relentless disease.
If you can, please come join us-it’s not too late! We would deeply appreciate your presence. It gives us strength to know we are not alone. If you are unable to be there in person, please consider participating as a virtual participant. Nancy, our walk founder and NMO mum will write your name on her shirt and you will be with us in spirit. You can also choose to make a donation-every single dollar will make a difference. Click here to donate directly to the UBC/VGH Hospital Foundation or click here to donate directly to the Guthy-Jackson Charitable Foundation. (You can make a note that it’s for the NMO walk.)
We are all in. Please join us.