My phone rang this morning with a familiar request. Would I talk to someone just diagnosed with multiple sclerosis? I am often asked to speak to a usually young person who has been diagnosed with the sickness. Leave me alone, I think. What do I know? I ask myself. There are no answers, only questions, doubts, fears. Okay, I say, but have him or her call me. A friend or relative may think someone wants to talk, but often the poor confused soul just wants to hide. I get it, and more often than not, my phone does not ring.
So here is my unsolicited, perhaps unwanted advice.
Slow down. Take a deep breath and do nothing. Finding the perfect neurologist, as if one exists, can wait. There is time later. Do not dive headfirst into an MRI machine. You’ll get a headache. I will get you an appointment next week. Sit down and think. You are not going to wrestle the beast to the ground. But you do need to coexist with it for a lifetime. You have signed up for a lifetime membership in this club, which will not expire until you do.
MS is a mind game as much as a disease of the body. Are you going to be victorious or a victim? Too many of us construct fences around ourselves, limiting us by assuming the worst. I am a believer in healthy denial. Do not deny the disease. That is a losing hand. Deny the certainty of possible outcomes. You have started on a journey without end. Learn to live with uncertainty. You do not know where your journey will take you. Your attitude will play an important role in your health. Chill out.
Join a gym. Get in shape and stay there. Body strength can save you when you need to hold on or fall carefully. And you will feel better and look healthier by dropping the weight and toning up. Learn to respect yourself. MS too often attacks self-esteem and confidence. You are psychologically stronger than you think. Do not forget that.
Please learn to laugh. Illness is arbitrary and the theater of the absurd. Crying gets you nowhere. “I am thankful for laughter,” Woody Allen noted, “except when milk comes out of my nose.” Actually, that can be pretty funny, too. Do not overlook what your family and friends need to cope with your situation. A positive attitude will lighten their load.
Yeah, I know. Well they do not have MS. Yes they do. We are not alone. Our families and friends walk in our shoes with us, no matter how we stumble. I helped raise three kids who had to live with my condition. We laughed a lot. Never tears. When I could not button a shirt or tie my shoes and got angry with myself, they called me on it. When I swore a blue streak at the top of my lungs, my youngest threatened to wash out my mouth with soap.
Know this. You will survive. And you can have a good life. But you have to work to make these things happen. Toughen your skin, my friend. None of this will be easy. Accept that. Your future has not been taken from you, only your directions to Easy Street.