Wright On: MS is incurable, but Crutchfield is indomitable
When she woke up that morning, Daria Crutchfield thought she must have slept awkwardly somehow on her left side. The tingling and numbness would leave once she got up and began moving around.
It was December 2004 and she had work to do, holiday shopping to finish up, she didn’t need the annoyance, but after being up for only a couple of minutes she realized she was in a new world she didn’t know anything about.
She still has trouble talking about what happened after she was taken to the hospital, after the CT scans, after they ran the MRI, after she was finally diagnosed with multiple sclerosis.
Daria Crutchfield is a doer, an active outdoors person who had great confidence and took no small amount of pride in her job as a legal secretary. Her numbers were always right. Not just mostly right, but exactly right.
The left side of her body had gone numb, her left eye hurt, her vision was blurry. For a time, the depression overwhelmed her, put her in a cage. She was living out a life sentence and the cell was her body.
“It was a death sentence,” she said the other day, “that’s what I thought at first. It floored me, it took everything from me. I had heard of MS before, but I had no idea what it was, I just felt like I had something that was going to basically end my life.”
A lot of people don’t seem to know much about multiple sclerosis, which is odd because it is an auto immune disorder that has impacted the lives of more than 2.5 million. Twice as many women as men get MS, which can leave people with slurred speech and impaired balance that makes walking across the room a challenge. She became forgetful, too, another common occurrence, she would blank out for no apparent reason, not knowing why she just walked into the bedroom, or where she put her hair brush.
One other problematic thing about MS: It has no cure.
But it can be beaten, one-on-one. It doesn’t have to be a death sentence. Had it not been for MS, Crutchfield would have competed in Sunday’s Hilo marathon, but she recently picked up a flu bug and isn’t completely well. She thought it would take another week to get rid of the last traces, and then maybe a few weeks or a month of training to get ready for another marathon.
She’s finished a few marathons, but her top running achievement might have come in January when she completed the Hilo-to-Volcano ultra marathon, approximately 31 miles, all uphill.
“Next year,” she said, clenching her right hand into a fist, “I’ll be ready.”
Had it not been for her daughter and other family members, Daria Crutchfield might have given up after that morning more than a dozen years ago when MS first slapped her.
“They were persistent,” she said, “they basically reminded me who I am, they encouraged me, they supported me and believed in me.
“I’m a fighter,” she said. “I’ve always been that way, it’s who I am. I have never been a quitter, that’s not me. Maybe I’m stubborn, but I won’t just give up on something, I’ll fight my way through it.”
Hearing her closest family members remind her of her deep well of conviction, that she can overcome obstacles, finally hit her consciousness like a splash of cold water.
As she learned more about MS, she tried staying active by walking, with an unspoken goal to run. Over the years and after a marriage, her insurance carrier changed a couple of times, so she has seen a variety of neurologists and others in Hilo, Kailua-Kona and, for a time, Honolulu.
“One of the early ones said, literally, ‘You must not run, not now, not ever,’ I won’t forget that,” Crutchfield said. “Others said similar things, but I saw people who also encouraged me, cautioning to always have someone with me.”
At this point, it would be good to report that as Daria Crutchfield started to run again, her problems gradually went away and the more she ran, the better it got, until today, when she is symptom free.
But that wouldn’t be true.
It attacks her in phases. There are good days and not so good days, but her life has surely changed. She had to quit her job a couple of years ago, not because she had trouble walking around at work, but because the MS invaded her head.
“It was very hard to concentrate, everything took more time and I remember one day I had to write down a series of numbers and I couldn’t remember how to make a 9. I felt so bad because I realized I could make a mistake and not even know it.”
She went to her boss who wanted to keep her on, but Crutchfield had too much pride in her work for that. She felt she couldn’t take money doing less than her best, no doubt making mistakes that co-workers would have to correct.
She had a frightening spell in 2014 when she lost her speech and her ability to stand up and walk. After breakfast one morning, when husband Milton had made a spinach omelette, it hit her like a sucker punch.
“Right away,” she recalled. “I said the most terrible thing to my husband, and I don’t know where it came from. I said, ‘Did you poison me?’ It was terrible. I was completely out of it, blubbering things that made no sense.”
She was in the hospital for two weeks where they infused steroids into her brain and after six days or so, things started to clear up. She fought the doctors, then listened and started getting better.
Her brain was not communicating properly to her legs and feet. Milton urged her to follow doctors orders, and they eventually started walking a few steps in the hallway. Then a few more, then all the way down the hall. One day they found a cane leaning against a wall and Daria was able to use it effectively, unlike the clumsy walker they wanted her to try.
“The cane, somehow, helped bring me back,” she said. “I got around with it pretty well, then I didn’t need it anymore.
“I defeated it,” she said. “That gave me great confidence.”
The doctors pleaded with her not to run, too many bad things could happen out of nowhere, but again, she had her own mind leading her. She began to run and run some more. Hilo-to-Volcano — her second ultra marathon — gave her new life, then she came down with the flu.
“My daughter had it for a week or so,” she said. “I’ve had it for two months, but I’ve almost got it beat.
“I had my heart set on the Hilo marathon,” she said, “but it just didn’t work out this time.”
Her message to others with MS is simple, and you may already know it.
“Fight,” she said, “that would be my message. Learn everything you can about it, get second opinions, but more than anything, don’t let it be a death sentence, stand up and fight, you can do it, you can still live your life.”
That doesn’t mean life is easy. Everything takes more time. One day last week she had a 10 a.m. doctor’s appointment and she woke up at 5:30 to give her enough time to get ready.
“Things get spaced out, you misplace things, you forget things, but you just keep going,” she said. “The world needs to know, Hilo needs to know, you can do this. My life has been compromised, that’s clear, but I’m not here begging for one more day, I have a life, I have goals.”
And always, the struggles, sometimes profound, sometimes small, as happened the other day.
“My husband was in the kitchen and I was in the other room. He said, ‘What’s the hair brush doing in the refrigerator?’
“I couldn’t remember where I put it,” she said.
And then she laughed.
“It can’t beat me,” she said. “I don’t quit.”
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