Living with the unknown, living with MS


We drove home in silence. My wife didn’t say anything. I didn’t say anything. We were stuck in rush hour traffic and I searched for the right words to break the silence, but they never came. We had seen the umpteenth doctor and we still had no real answers. We had sought answers. We left with more questions.

traffic-jam-688566_1280For the previous three months, my wife had been experiencing pain and loss of feeling in her arms and legs. She would be fine one minute, the next her leg would give out underneath her. She complained constantly of her arms falling asleep or simply feeling like 20-pound weights.

We went first to our family doctor, then to a specialist. They gave her one test then another, and another. In particular, each time they would ask her to close her eyes and touch her nose. Each time, she would miss completely, touching her eyes, lips, ears, but nowhere near her nose.

doctor-563428_640The search for answers

We continued onward in our quest to get answers, traveling to some to the most respected hospitals in the Philadelphia region. After one such visit, we finally got the answer we had been searching. The doctor walked in the room and let us know that he thought my wife suffered from Multiple Sclerosis.

MS is an unpredictable, chronic disease that attacks the central nervous system (brain, spinal cord, and optic nerves. The disease disrupts the flow of information between the brain and the body, causing a many different symptoms including vision loss, pain, fatigue, and impaired coordination.

msribbonHe told us how the symptoms vary from person to person. Some people could have it and be symptom-free for most of their lives, others could have severe symptoms that never go away.

We looked at the doctor and questioned what that meant for us? What were we in for? Of course, the doctor couldn’t say, just that under the worst case scenario, she would be looking at paralysis or even blindness and, best case, numbness in the limbs.

We feared the worst.

Moving forward

wheelchair-1589481_640The doctors tried to give us answers, but they couldn’t give us the answers we asked. Would she still work as a teacher? Would she end up in a wheelchair? I spent months shaking my fist at God. And we got nowhere.

Finally we started to move forward. At the doctor’s suggestion, we started to give my wife a weekly shot of one of the newer MS drugs. The shot wasn’t a cure, just something that would help with the symptoms. The man who hates needles had to deal with them on a weekly basis.

And most important, we kept living our lives and moving forward.

God’s sense of humor

And we kept going back to the doctor. A funny thing happened though. My wife found out that she was pregnant and on the doctor’s orders she stopped taking the shots. The pregnancy went well and we had our third child, a son. Despite the challenges of a newborn, she had fewer and fewer issues. When my wife went back to her doctor for her regular MRI scan, the MRI was clean, the lesions that had helped the doctors identity MS were gone.

cropped-image3.jpegI’m no science geek, but the body tries to repair the damaged myelin. While not exactly out of the ordinary, we still took it as a positive that the symptoms had disappeared too.

We were confused, but we weren’t ones to argue, we liked how she was feeling.

Choosing life

In any event, we continued running after our busy family. When we looked up next, the calendar had changed a whole year and it was time to go back to the doctor. The doctor looked again at the MRI, it was clean again just like the year before.

The next year, the same thing.

The following year, the same thing.

My wife still can’t close her eyes and touch her nose. We call it her constant “drunk stage,” because God help her if she ever gets pulled over and is given a random DUI test. Case closed, there’s no question, she’s going to jail. A little harsh, a little bit of gallows humor, maybe, but we both learned early in this journey that you need a sense of humor.

One step at a time

sea-1281780_640My wife still has the occasional loss of feeling in her arms and legs, but nothing like it had been. My wife’s doctors and we know there’s something going on neurologically, but we don’t know what. While I would love an answer, the lesson for me throughout our saga has been “you just never know.”

Life is crazy and unexpected. You can’t predict it. You can’t chart it. You have to live it. There’s no substitution for taking one day at a time, until you look up and see that first a whole year, and then five or ten years have passed.

If we had given up oh so many years ago, look at all that we would have given up. In short, you have to live life to the fullest.

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