Superman vs MS
Note from Rena: Today is World MS Day. Erick wrote this post last week and scheduled it to be posted on this day. What neither he nor I knew was that he wouldn’t live to see the day. Sadly, he died unexpectedly Sunday evening. In addition to MS, he had diabetes, which had gone undiagnosed. That was the disease that ultimately took his life. Thank you all for your support of Erick and his writing.
Batman or Superman?
Most people don’t hesitate in answering the question. They can tell you which hero is their favorite in an instant. For me, it was always Batman.
Then my symptoms came: weakness, vision problems, numbness and problems with coordination. When I was first diagnosed with Multiple Sclerosis in 2009, I was at a loss about how to explain what the disease was and how it was affecting my body. First described by Jean-Martin Charcot in 1868, MS is an inflammatory disease where the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms.
So what does that really mean?
MS affects the ability of nerve cells in the brain and spinal cord to communicate with each other effectively. Nerve cells communicate by sending electrical signals down fibers called axons, which are contained within an insulating substance called myelin. In MS, the body’s own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer effectively conduct signals.
For the common man it’s difficult to explain, but every more difficult to live with. The signs and symptoms are different for everyone. One day the perfect way to explain it hit me:
Superman
As I said earlier, I’ve alway been a Batman guy. I mean, who can really relate to someone who is virtually a god? Granted, it’s not like I could really see myself as a billionaire playboy that fights crime at night, but it could happen.
The thing about Superman is that everyone knows who he is and he always looks the same. Look! Up in the sky! It’s a bird! It’s a plane! It’s… you know what comes next. Probably the most recognized superhero in pop culture, Superman has been elevated to mythic folk hero status. He is a universal icon that means different things to the diverse people he inspires. He fights for the little guy.
Superman is the most powerful being on the planet. He has super-everything—strength, speed, flight, invulnerability as well as his renowned X-ray and heat vision. He has one weakness – Kryptonite.
Stick with me, I promise this will all make sense (at least to comic book people). Kryptonite is the mineral debris from Krypton transformed into radioactive material by the forces that destroyed the planet. Prolonged exposure will eventually kill Superman. The radiation nullifies his powers and immobilizes him.
Some of the signs and symptoms:
• Blurred or double vision
• Thinking problems
• Clumsiness or a lack of coordination
• Loss of balance
• Numbness
• Tingling
• Weakness in an arm or leg
People who have MS are probably making the connection. For thirty-five years of my life, I felt like I was bigger, stronger and faster than most of the people around me. I played football in high school and college. I worked in law enforcement for close to ten years. To my kids, I was Superman. Why couldn’t my body do the same things it did before? After all, I don’t look any different. I was still wearing the blue suit and red cape.
When MS hits your body, it’s like the effects of Red Kryptonite. Out of nowhere, a problem can happen just one time, go away, and never return. For some, the symptoms become worse within weeks or months.
To the people around you, you are still Superman. Here are some of the things neither you nor they can see:
Abnormal sensations: we feel a “pins and needles” sensation, itching, burning, stabbing, or tearing pains. This past week, I felt like someone was stabbing me in the shoulder with a dull, hot blade.
Bladder problems: I have to rise from bed to go the bathroom four to five times each night. Try getting a good night’s sleep dealing with that.
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Difficulty walking: MS can cause muscle weakness or spasms, which make it harder to walk. Balance problems, numb feet, and fatigue can also make walking difficult. When I try playing basketball with my boys, it feels like my feet are in cement. I know what I want to do, but my body won’t let me.
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Dizziness: It’s common to feel dizzy or lightheaded. Sometimes this comes with vertigo. I had a bout of that a few weeks ago and I haven’t really felt steady since. It’s like the room is almost always spinning and you can’t get your bearings.
Fatigue: As I written before, this is my biggest problem. It usually hits in the afternoon and causes muscle weakness, slowed thinking and sleepiness.
Thinking problems: As a writer, I make my living putting words on a blank page. My concentration comes and goes. For most, this means slowed thinking, poor attention, or fuzzy memory. While it doesn’t change your intellect and ability to read and understand conversation, it’s extremely hard to gather my thoughts. I have notebooks to keep up with my notebooks.
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Problems with your eyes tend to be one of the first symptoms. They usually affect only one eye and go away on their own. Your sight may be blurry, gray, or have a dark spot in the center. You may suddenly have eye pain and temporary vision loss. At my last eye appointment, my doctor said my said my glasses seemed like they belonged to someone else.
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Depression- Sadness and or irritability, Loss of interest or pleasure in everyday activities, Loss of appetite—or increase in appetite, Sleep disturbances—either insomnia or excessive sleeping, agitation or slowing in behavior, fatigue, feelings of worthlessness or guilt, problems with thinking or concentration, persistent thoughts of death or suicide.
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I was never really a Superman, but now I feel like I can truly relate to him in his moments of weakness. As I go through my life trying to find my new normal, I know I can’t quit. I have to keep testing my limits to stay healthy and alive. I have to keep playing ball, writing and living my life to the fullest. I can’t let this disease defeat me. Just like Superman has an entire world to protect, I have a family to protect and I refuse to let them down.
