Hey everybody! Multiple sclerosis is a thing that exists!
There, now you’re aware. That wasn’t so hard. Problem solved!
Huh. Probably should’ve done that sooner.
Wait… I think multiple sclerosis is still a problem. And I think there are people that may not have read this yet that don’t know about MS. I guess I’m not done after all.
As I’ve shared in the past, my wife Nahleen was diagnosed with MS over 8 years ago. Multiple sclerosis is an autoimmune disease that damages the ability of the body’s nerve cells in the brain and spinal chord to communicate with each other. This leads to a variety of symptoms, usually different for each person, that can include coordination and balance problems, muscle weakness, fatigue, pain, speech difficulties, cognitive lapses and other fun stuff. The severity can vary wildly but generally (but not always) gets gradually worse over time. The cause is unknown. There is no cure.
The National MS Society is trying to change that. They do amazing work to raise money for research and treatment. They also organize workshops, seminars and other activities to help people live with this disease. They have been a great resource for us and their proactive involvement has helped produce the first oral medication for MS, Gilenya, which Nahleen started taking a few weeks ago.
Before that, Nahleen treated her MS with one of four self-injected medications. Yes, self-injected involves stabbing oneself with a syringe deep enough to get between the fat layer and muscle. Depending on the type of medication, this is done either daily, every other day, three times a week, or once a week. The worst thing in the world? No. But the process was not a good time. Pre-medication (Tylenol for the pain and numbing of the injection site with ice), preparation, injection, clean-up. Then there are all sorts of awesome side effects for each version. For Nahleen, she experienced flu-like symptoms like a fever (she would usually wake up in a sweat in the middle of the night after each injection), muscle aches, fatique, depression (Hey, aren’t these some of the symptoms for MS? Why yes, yes they are.), and injection site reactions (bruising, swelling). Oh yeah, and it hurts. Sometimes barely at all, but sometimes quite a bit.
So yeah, switching to a pill kind of feels like winning the lottery. Side effects are minimal to nothing so far. (Although we might need the real lottery to pay for it.)
If that’s all the National MS Society did, I would love them forever, but they do so much more. Like organizing Walk MS events, which we usually do (but sadly not this year), Bike MS, and MS Awareness Week, where they’re asking what MS means to people. You can post your answer at that last link, or tweet including the hashtag #msequals, make a video on YouTube or post a blog like I’m doing.
My answer is in the title of this blog. MS = 1 day at a time. One thing I had to abandon was what I expected to happen tomorrow, next week, next month, next year, forever. Every day is different for Nahleen, and I have to be willing to allow for a drastic or slight change of plans. Whether it’s about grocery shopping tomorrow, flying back east to visit our families this summer, or great big life decisions and dreams 5-10 years from now, I have to be able to let them go. Sure, it can make RSVP’ing for birthday parties challenging, but we’ve found that most of our friends understand. It takes being patient, forgiving and willing to… improvise. Why yes, maybe there’s something to those improv comedy shows I do with the Magic Meathands that help me accept and adjust. Even comic books offer a way to look at life that can help in dealing with all of this. Comics, or sequential art, break up life into snapshots or moments of time. Appreciating that moment, within and without the context of the moments (and life) around it, give me a gratitude for the times Nahleen and I have together regardless of whether it was the big date we were “supposed” to have, or a quiet and careful night at home.
Nahleen and I may not be doing Walk MS this year, but we would still love to help raise money for the National MS Society. We’d like to refer you to two Walkers this year, and hope you will consider donating to them. Michelle Hazan is a friend of ours and has been on our Walk MS team for several years now. Through the magic of Twitter, I met Angelina Fuller (@Symph0ny) who is doing her very first Walk MS this year. It would be amazing if our people could help them reach their goals.
Also, if you’re in the west LA area around lunchtime (12-2 PM), there will be a different food truck camped out at the National MS Society Southern California office at 2440 S. Sepulveda Blvd., Los Angeles 90046 each day of the week, to celebrate MS Awareness Week. 10% of sales goes to the National MS Society. Naan Stop and The Surfer Taco trucks were there Monday, yesterday saw Cali Cuisine (aka the Calitruck), and today will have three trucks hanging out in the So Cal office parking lot: Don Chow’s Tacos, White Rabbit, and the Calitruck! I heard there was a 45-minute wait yesterday with only one truck there, so the lines should be moving faster today. Check out the Facebook page for Walk MS SoCal & Nevada for tomorrow and Friday’s food trucks, and to hear more about their efforts to fight MS.