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MS won’t make me give up hope

Editor’s note:  Find out more about multiple sclerosis here.

When I was diagnosed with multiple sclerosis in 2004, I thought my life was over. Hubs and I hadn’t been married long, and we didn’t have any babies yet. All I could think was that I would soon be crippled, shriveled, a burden. When I sobbed out the news to my dad, he was pragmatic as always.

“Well, at least it’s not cancer, Melanie. That stuff can kill you.”

My dad, a cancer survivor himself, likes to maintain perspective. My first few years with MS were rough, though. During that time, I experienced lots of “relapses,” bouts of nerve inflammation and interruption that manifest physically. I lost the hearing in one ear, color vision, the ability to walk without assistance or drive a car, strength in my hands, depression, unbearable exhaustion and other bits of personal yuckiness you really don’t want to know about. I was fortunate to have a nurse for a husband, amazing bosses, wonderful friends and a mother who helped care for me when things got really bad. After the birth of Little Son, I lost the use of one of my arms for a while. I was consumed with fear. There was a scary new medicine available for MS, and I was ready to try it if it would allow me to take care of my baby.

I started taking Tysabri by IV infusion five years ago and have not had a single relapse since I started. No new lesions in my brain or on my spine. With the exception of the fatigue, most of the time I can forget I even have the stupid disease. For me, the benefits of taking Tysabri have greatly outweighed the risks.

Call me crazy, but I always look forward to the days I spend at Allison Cancer Center getting my meds. Kicked back in my leather recliner, listening to the gentle snores around the room and the hums and beeps and clicks of the IV pumps, these are hours I really enjoy. I can work on my laptop, watch a movie, shop online, listen to music, visit — and my favorite — read. Mostly uninterrupted. No bottles, no diapers, no phones, no cartoons, no fighting over Spider-Man, no hiding in the bathroom to finish a crucial chapter. It is literally my “me time.”

And a lot of the people here are really great, too. Fabulous nurses, doctors, cookie-wielding volunteers. Every person has a story. There is sadness and strength and faith and laughter in this room. Everyone doing what they have to do to see another day. Mr. F had a stem cell replacement to fight his cancer, and he proudly shows off his peach fuzzy scalp. “I have been reborn. I am literally a brand new man.”

Mr. Handsome, whose wife left him. The gracious Ms. N, whose faith in God has only grown stronger.

Inevitably, someone asks me what kind of cancer I have, or a volunteer tells me how brave I am, and I have to explain to them that I am not fighting for my life. But I am fighting for the ability to have the life I want, to be independent and able to raise my children. And even though I don’t have cancer, these sweet folks have let me in on the camaraderie that is the chemo lab. We all have a sense of being “in it” together, tangled in lines and strangling blood pressure cuffs, beeping machines and needing help to go to the bathroom.

We were all startled out of half-sleep Thursday when the fire alarms started going off. At first, we thought it was a drill. Next thing you know, we’re being ordered up and out. Forty or so tired and confused folks trying to make it out one door at the same time. Shuffling, carrying purses and IV poles and pumps. It’s hard to move quickly or gracefully when you are tethered to a rolling pole and don’t want to rip out your IV! We all slowly milled about in the parking lot, blinking uncomfortably in the midday sun.

“We look like a scene out of ‘Night of the Living Dead,'” said Mr. F.

That cracked me up. I am a big fan of all things zombie, and as I surveyed everyone shambling about, some muttering, others grumbling about being hungry, and generally everybody having no idea about what was going on, I knew he was right.

But another one of the patients didn’t see the humor in his observation. Grimacing and holding onto her IV pole, she reminded the zombie herd around her that no one there was dead yet.

This too, struck me, this being surrounded by people who have not given up hope. And realizing that I really am one of them.

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